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55 Dementia Dissertation Topics

Published by Owen Ingram at January 2nd, 2023 , Revised On August 16, 2023

The term dementia refers to a collection of symptoms and disorders, rather than a single disease. As a result, dementia has a wide range of dissertation topics. Finding a dissertation subject related to dementia sufferers might be advantageous. You may be attempting to make a difference in the lives of dementia sufferers. You must investigate some previously unknown features to assist them! For those hoping to use their dissertation to help people with dementia, this is the right place. Our team has compiled a list of dissertation topics for your consideration. Picking dementia research subjects that haven’t received as much attention as others can add something new to the table.

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List Of Dementia Dissertation Topics For All Academic Levels

• An in-depth investigation of dementia in men and women – a case study
• An examination of the ways advocated by experts for dealing with dementia sufferers
• Highlighting the genetic and environmental risk factors for dementia development in the elderly in the United Kingdom
• The study of senior dementia patients and how they react to definite and uncertain conditions
• A comprehensive analysis of the connection between risks and smog and an increase in dementia in European industrial towns
• Experts studied a cognitive test for diagnosing mild dementia diseases in male patients.
• Use educational expert dementia strategies and how they might help treat and care for dementia sufferers.
• How much nursing assistance is required to care for dementia patients?
• Investigating the significance of the care policy for senior dementia patients in the United States of America
• The nursing qualification and certifications necessary for the care of senior dementia patients in the United Kingdom are highlighted.
• Recognizing the patient’s quality of life. A patient with dementia is the subject of this case study
• What are the most effective ways for early dementia identification in the United Kingdom? A thorough investigation
• A study of dementia patients receiving home care and how it has aided in reducing the symptoms
• Do dementia caregivers experience stress? – an examination of survey results.
• Non-pharmacological therapies for aggressiveness and stress in dementia patients
• What is the pain treatment procedure for dementia patients?
• The dementia nurses training program in the United Kingdom and how it has improved dementia patient care
• A comparison study evaluated the relationship between dementia patients’ longevity and the point at which their therapy began
• Investigating the link between memory loss and the early stages of dementia
• Investigating the cognitive tests nurses use to detect minor cognitive impairments that can progress to dementia in male patients
• Problem behaviour in dementia and the production of informal caregiving services
• Investigating the use of educational strategies by nursing staff in overcoming communication challenges in dementia patients
• Patient-centred pain control in elderly people with dementia equality, diversity, and inclusion in dementia care practice
• Can cognitive training slow the progression of dementia?
• What function does physical activity increase mobility and stamina in vascular dementia patients? An in-depth examination
• The importance of contemporary technology in the care of patients suffering from dementia. A thorough examination of dementia sufferers in the United Kingdom
• Examine the factors that increase the likelihood of developing dementia at a young age in the United Kingdom
• The ability of nursing staff to determine the requirements of dementia patients by interpreting behavioural displays and emotional responses of patients
• Making end-of-life decisions for nursing home residents with dementia
• Autism and dementia are both diagnosed and treated in the same way
• Identifying modifiable dementia risk factors pathways connecting late-life depression and dementia
• Is there communication between dementia doctors and patients?
• What are the global trends in dementia? – case studies from various nations
• Dementia research by UK ethnic minorities and how it has affected individuals
• Mild cognitive impairment and dementia in Parkinson’s disease imaging
• Improving cognitive function before clinical dementia symptoms
• Longitudinal relationships between serum cytokine levels and dementia
• Dementia and the affected parts of the brain
• Examine doll therapy treatment and how it has progressed and improved the medical sector
• Observational pain assessment scales for dementia patients
• The treatment of dementia patients and its beneficial impact on their lives.
• Deficits in exploration under ecological conditions as a marker of apathy in frontotemporal dementia
• What are the three behavioural issues related to dementia?
• What are some common behaviours observed in dementia patients?
• When do dementia patients forget about family members?
• What is the life expectancy of someone suffering from Parkinson’s disease and dementia?
• How can you tell if someone has dementia is near death?
• An overview of the literature on medical ideas and notions about dementia.
• A study on a cognitive test for diagnosing mild dementia diseases in male patients.
• What effect does dementia have on a person’s care needs?
• Why is early retirement associated with an increased risk of dementia?
• Do retirees with dementia require financial assistance?
• What are dementia pharmacological interventions?

If you have chosen one of the above dementia dissertation topics, you can start working on your dissertation . You might also want to review our list of nursing dissertation topics for extensive research because they are correlated with the field of medical science.

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Final Words

There is no doubt that your dissertation is the most important document of your academic career. A dissertation on dementia is another matter altogether. Your dissertation topic should entice your readers to read it by piquing their interest.

Above, we have provided the most comprehensive dementia research topics. The topic of your dissertation can be anything you wish. Ensure that your final dissertation topic meets the criteria for your dissertation. Dissertations that fail to meet the approval standards will almost certainly be rejected. We offer customised dementia dissertation topic s with research aims and objectives if you are still looking for suggestions.

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To find dementia dissertation topics:

• Study recent research in dementia.
• Identify specific aspects like care, treatment, ethics.
• Explore interdisciplinary angles.
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• Consult experts or professors.
• Choose a meaningful and feasible topic for in-depth study.

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87 Dementia dissertation topics in nursing

Table of Contents

Are you looking for dissertation topics on dementia nurses? We’ve got this range of dissertation topics on nursing and dementia nurses. The list is prepared after thorough research on the emerging trends and the approaches that have influenced dementia nurses and the field of healthcare. These topics can aid you in covering up your undergrad and master’s degree in the field of critical care nursing , autism , and adult nursing .

Best dissertation topics on dementia or research topics in dementia for masters and undergraduate students

Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is a common symptom of dementia. Alzheimer’s disease is the most common cause of dementia, but there are many other conditions that can cause dementia, including stroke, frontotemporal dementia, and Lewy body dementia.

Symptoms of dementia can include difficulty communicating, difficulty with daily activities, difficulty with problem-solving, difficulty with memory, difficulty with orientation (knowing where you are and the time of day), and changes in mood and behavior. It is important to note that dementia is not a normal part of aging, but it is more common in older people.

Here is the list of dissertation topics on dementia for college students.

Dementia dissertation Topics Examples

• An in-depth comparison between dementia in both men and women – a case analysis
• An analysis of the approaches recommended by professionals to deal with Dementia patients.
• Study on elderly patients who have dementia and how they react to certain and uncertain situations.
• Is there a certain diet plan for dementia patients? Can this help everyone with dementia?
• To study the consequences of Dementia -a literature review
• Consequences and prognosis of dementia – a critical review of literature
• What communicative strategies are used by nurses to deal with Dementia patients?
• To study the strategies in different countries to deal with dementia patients.
• What tools are needed to deal with Dementia patients?
• To study dementia and other Mental disorders and how it affects people of different demographics.
• Can nurses improve the lives of people who have dementia?
• Case study on different dementia patients – A US analysis.
• Do nurses play a role in decision-making with dementia patients?
• Literature review on medical theories and concepts related to dementia.
• To study advanced Dementia patients – a comparative analysis of cases
• To study the nursing care programs for advanced dementia patients.
• To study the psychological outcomes of Dementia patients.
• Is modern technology good for Dementia caregivers? Case examples.
• Study on doll therapy treatment and how it has evolved and benefited in the field of medicine.
• Exploring the effectiveness of different non-pharmacological interventions for managing behavioral and psychological symptoms of dementia.
• Examining the relationship between diet and cognitive decline in individuals with dementia.
• Investigating the role of social support in the management of dementia care.
• Evaluating the effectiveness of telehealth interventions for supporting individuals with dementia and their caregivers.
• Examining the relationship between physical activity and cognitive function in individuals with dementia.
• Exploring the impact of caregivers’ mental health on the well-being of individuals with dementia.
• Evaluating the effectiveness of different pharmacological interventions for managing behavioral and psychological symptoms of dementia.
• Investigating the role of genetics in the development and progression of dementia.
• Examining the experiences and perspectives of individuals with early-onset dementia.
• Evaluating the impact of cultural and societal attitudes on the care and support of individuals with dementia.

Good Dementia Research Topics Examples

• Study on why obesity is an additional risk for Dementia patients.
• The role played by nurses in physical therapies for Dementia patients.
• Is physical therapy important for Dementia patients?
• Study on modern technology in helping Dementia patients by the UK.
• Nurse qualifications for Dementia caregivers are important.
• Do Dementia patients suffer from depression? – a case analysis
• Different stages of dementia – a literature review
• Is the friendly relationship of caregivers with patients important to deal with dementia?
• How do nurses deal with patients who lost their identity?
• Do you think dementia is a genetic and hereditary issue?
• Do lack of nutrition cause Dementia? – A review
• Study on a cognitive test conducted by experts for detecting mild disorders of dementia in male patients.
• Use educational expert methods for dementia and how these can benefit in treating and taking care of dementia patients.
• The impact of social support on the progression of dementia
• The effectiveness of non-pharmacological interventions for managing dementia-related behaviors
• The relationship between physical exercise and cognitive function in individuals with dementia
• The role of caregivers in managing dementia in the home setting
• A comparison of pharmacological treatments for dementia
• Exploring the relationship between diet and cognitive decline in older adults with dementia
• The effects of sensory stimulation on cognitive function in individuals with dementia
• Examining the effectiveness of telemedicine for managing dementia care in rural communities
• The ethical considerations of decision-making capacity in individuals with dementia
• The impact of cultural and societal attitudes on the care and support of individuals with dementia.

Most demanding Dementia research title

• How is much contribution of nurses needed to deal with Dementia patients?
• Study on MRI and CT scans for dementia under the age of 40.
• Is there an understanding between Dementia caregivers and Dementia patients?
• What are the Global trends in dementia? – review of cases in different countries.
• Study on Dementia by UK ethnic minorities and how it has affected the people.
• Study on dementia patients getting care at home and how it has helped in controlling the effects.
• Study on dementia in different countries – a comparative analysis.
• What are neuropathological findings and staging in dementia?
• Do dementia caregivers suffer from stress? – A survey analysis.
• Study on non-pharmacological interventions for aggression and stress in people with dementia.
• What is the process of pain management for Dementia patients?
• Dementia nurses training program in the UK and how it has helped improve the care for dementia patients.
• Directions for Dementia patients – how they can live a normal life.
• To provide palliative care to Dementia patients at home.
• What are the steps to follow in the early stages of dementia?
• Study on the early stage of dementia – a literature review.
• Study on behavior changes in Dementia patients.

More Dementia Dissertation Topics Ideas

• Study to understand the patient’s quality of life with dementia.
• The impact of social support on the development and progression of dementia
• The effectiveness of non-pharmacological interventions for dementia, such as music therapy or exercise
• The role of genetics in the development of dementia and the potential for genetic testing as a predictive tool
• The psychological and emotional effects of caring for a loved one with dementia
• The ethics of decision-making for individuals with dementia and their caregivers
• The impact of environmental factors, such as air pollution or social isolation, on the development and progression of dementia
• The effectiveness of pharmacological treatments for dementia, including both traditional and experimental approaches
• The role of early detection and prevention in the management of dementia
• An exploration of cultural and societal attitudes towards dementia and how they impact the experience of individuals with the condition and their caregivers
• A comparative analysis of dementia care practices in different countries or regions.

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Digital Commons @ USF > College of Behavioral and Community Sciences > School of Aging Studies > Theses and Dissertations

Aging Studies Theses and Dissertations

Theses/dissertations from 2024 2024.

Retirement and Cognitive Aging: Modifying Factors , Britney M. Veal

Theses/Dissertations from 2023 2023

Contribution of Contextual Factors and Neuropathology to Dementia , Monica E. Nelson

Theses/Dissertations from 2021 2021

Serious Mental Illness in Nursing Homes: Quality Concerns , Dylan J. Jester

Multidimensional Well-Being Across Time Scales in Caregivers and Non-Caregivers , Victoria R. Marino

Resilience and Health Outcomes of Sexual Minority Middle-Aged and Older Adults , Christi L. Nelson

Early Indicators of Cognitive Dysfunction: The Role of Mild Behavioral Impairment , Hillary J. Rouse

Stressors, Resources, and Psychological Well-Being Among Working Black and White Caregivers in the United States , Maureen E. Templeman

Theses/Dissertations from 2020 2020

Assisted Living Facilities in Florida: Examining the Factors Associated with Entries, Closure, and Licensure Change , Joseph W. June

Theses/Dissertations from 2019 2019

Using a Stress Process Model to Examine Longitudinal Racial Differences in Well-Being and Health: Results from a Population-Based Study of Caregiving , Adrian N. S. Badana

Interventions to Improve Older Driver Safety , Bernadette A. Fausto

Home-based Cognitive Monitoring: The Role of Personality and Predictors of Adherence and Satisfaction , Nasreen A. Sadeq

Theses/Dissertations from 2018 2018

Factors Related to Hearing Aid Use among Older Adults from Hispanic/Latino Backgrounds: Findings from the Hispanic Community Health Study/Study of Latinos , Michelle L. Arnold

Daily Fatigue and Subjective Cognitive Function: What Influences Daily Quality of Life Issues among Breast Cancer Survivors? , Sarah L. Eisel

Perspectives of older Blacks and Whites living with serious mental illness about outpatient mental health services , Rosalyn Roker

Broadening the Lens: A Systems Approach to Nursing Home Quality Improvement , Kelly M. Smith

Theses/Dissertations from 2017 2017

How Did I Get Here? Testing the Translation of the Morris Water Maze and the Influence of Hemoglobin A1c on Spatial Navigation Performance , Colleen Pappas

Improving Dementia Care through Online Training Programs: A Systematic Review and Evaluation , Michelle L. Pleasant

Pain and Physical Function in a Socioeconomically Diverse Sample of Black and White Adults , Angela Sardina

Sex after Gray Hair? Association between Sexual Activity, Hugging, and Health among older Adults? , Chantelle Sharpe

Theses/Dissertations from 2016 2016

Moderation Analysis of Bowel Function among Nutrients and Physical Function or Depression, as well as whether Bowel Function is Related to Cognition in Older Adults , Jessie Alwerdt

Care Setting of the Last Resort: Care Transitions for Nursing Home Residents Directly Admitted from the Community , Amanda A. Holup

Family Communication Concerning End-of-Life Care Preferences , Lindsay Jo Peterson

Genetic Moderators of Cognitive Decline in the Health and Retirement Study , Shannon K. Runge

The Effects of Cognitive Training among Individuals with Neurodegenerative Diseases , Elise Gabriela Valdes

Theses/Dissertations from 2015 2015

The Impact of the Veterans Health Administration's Home Based Primary Care on Health Services Use, Expenditures, and Mortality , Melissa Castora-Binkley

Lipoproteins and Health Outcomes: Cognitive and Physical Function in Older Adults , Marianne Chanti-Ketterl

Mediation and Moderation Analysis of Nutrition, Inflammatory Biomarkers, and Cognition in Older Adults , Elizabeth Handing

Analyzing the effect of complaints, investigation of allegations, and deficiency citations on the quality of care in United States nursing homes (2007 – 2012) , Kevin E. Hansen

The Association of Cognitive Endophenotypes and Risky Single Nucleotide Polymorphisms of Alzheimer's Disease within the Alzheimer's Disease Neuroimaging Initiative (ADNI) Database , Kyle Joseph Jennette

Spatially-Weighted Ethnic Density and Residential Segregation: Effects on Health Status among Older Mexican Americans , Sung Han Rhew

Theses/Dissertations from 2014 2014

"Having Our Say": Exploring the Processes and Feasibility of a Community-Based Participatory Intergenerational Physical Activity Program for Grandparents Raising Grandchildren , Tiffany Lenell Young

Theses/Dissertations from 2013 2013

The Effects of the A Matter of Balance Program on Falls, Physical Risks of Falls, and Psychological Consequences of Falling among Older Adults , Tuo Yu Chen

Exploring the Relationship between Physical Activity and Everyday Cognitive Function in Older Adults: Within- and Between- Person Variability , Christine Haley

Theses/Dissertations from 2012 2012

Bereavement Outcomes among Spousal Hospice Caregivers: The Role of Rumination, Feelings of Relief, and Perceived Suffering , Jessica Y. Allen

Exploring the Advance Care Planning Experiences among Persons with Mild Cognitive Impairment: Individual and Spousal Perspectives , Catherine Parsons Emmett

Daily Experiences of Older Adults with Mild Cognitive Impairment , Elizabeth Hahn

The Effects of Cognitive Stimulation and Computerized Memory Training among Older Adults Residing in Indepedent-Living Facilities , Elizabeth M. Hudak

The Relationship between Self-Reported Cancer Pain and Personality in Black and White Older Adults receiving Outpatient Cancer Care , Jessica Krok

Influence of Stress and Cytokinic Profiles on Cognitive Performance in Older Adults , Kerri S. Rawson

Theses/Dissertations from 2011 2011

The Role of Lipoproteins/cholesterol in Genomic Instability and Chromosome Mis-segregation in Alzheimer's and Cardiovascular Disease , Antoneta Granic

The Impact of Hospice and Dementia Special Care Units on End-of-Life Care for Individuals with Dementia , Catherine Elizabeth Mccarty

Tarnished Golden Years: Older Offenders with Mental Health Problems and Late Life First Time Offenders , Brianne Stanback

Patient Safety in Nursing Homes , Kali Thomas

Theses/Dissertations from 2010 2010

Personality and Adjustment to Assisted Living , Whitney L. Mills

Identifying and Addressing Health Disparities in Black Older Adults with Osteoarthritis , Chivon A. Mingo

How does Mobility Change over Time for Older Adults, and How are Changes Influenced by Cognitive Functioning? , Melissa Lunsman O'Connor

Theses/Dissertations from 2009 2009

Correlates of attitudes toward behavioral health services among older primary care patients , Nancy Bridger Lynn

Caregivers of adults with intellectual disabilities: The relationship of compound caregiving and reciprocity to quality of life , Elizabeth A. Perkins

Cultural Competence in Health Care: A Client-Based Perspective , Karon L. Phillips

Factors Affecting the Utilization and Quality of Long-Term Care , April Temple

Theses/Dissertations from 2008 2008

The Effects of Non-Surgical Interventions on Osteoarthritis-Like Changes in the Mouse Knee , Wendy K. Anemaet

Service Utilization among Bereaved Spouses and Family Caregivers , Elizabeth J. Bergman

The Role of Lifestyle Factors in Cognitive Aging and Dementia , Tiffany F. Hughes

Theses/Dissertations from 2007 2007

The preliminary impact of 2001 Florida tort reform on nursing facility litigation in one county , Deborah K. Hedgecock

Measurement equivalence of the center for epidemiological studies depression scale in racially/ethnically diverse older adults , Giyeon Kim

Medicaid risk adjustment model with diagnosis and pharmacy-based adjusters: Does it work? , Yanen Li

Modifiable factors for disability: Is there potential for reducing racial disparities in disability in older age? , Mihaela A. Popa

Community context and health disparities among older adults , Helen M. Zayac

Theses/Dissertations from 2006 2006

A three part study on the relationship between retirement planning and health , Linda Christine Albert

Predictors and outcomes of hospice use among Medicare and Medicaid dual-eligible nursing home residents in Florida: a comparison of non-Hispanic Blacks and non-Hispanic Whites , Jung, Kwak

An exploration of middle-aged and older Women's experiences of bat mitzvah within the framework of Erikson's theory of human development , Keren S. Vergon

Theses/Dissertations from 2005 2005

The Relationship between Caregiving and Bereavement: A Series of Three Studies , Allison Burton

Expanding the science of successful aging: Older adults living in continuing care retirement communities (CCRCs) , Kathryn H. Petrossi

Stress and Cognitive Performance in Older Adults , Christopher B. Rosnick

Theses/Dissertations from 2004 2004

Evaluation of the Prognostic Criteria for Medicare Hospice Eligibility , D Helen Moore

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Sample Dissertation - DEMENTIA AA

Related Papers

Gemma-Claire Ali

for which we are very grateful. All the authors and investigators of dementia studies who provided us more specific data from their work. foreword Today, over 46 million people live with dementia worldwide, more than the population of Spain. This number is estimated to increase to 131.5 million by 2050. Dementia also has a huge economic impact. Today, the total estimated worldwide cost of dementia is US $818 billion, and it will become a trillion dollar disease by 2018. This means that if dementia care were a country, it would be the world's 18th largest economy, more than the market values of companies such as Apple (US$ 742 billion), Google (US$ 368 billion) and Exxon (US$ 357 billion). In many parts of the world, there is a growing awareness of dementia, but across the globe it remains the case that a diagnosis of dementia can bring with it stigma and social isolation. Today, we estimate that 94% of people living with dementia in low and middle income countries are cared for ...

Dementia and Geriatric Cognitive Disorders

Bengt Winblad

Preventing chronic disease

Margaret Moore

With the aging of the U.S. population, a better understanding of the presentation and impact of dementia is essential to the future of public health. Dementia refers not to a single disorder but to a number of syndromes characterized by diverse behavioral, cognitive, and emotional impairments. Because dementia is costly in terms of both personal suffering and economic loss, an understanding of its prevalence, risk factors, and potential interventions is emerging as an increasingly important facet of public health and health care delivery. Recent advances in the understanding of its presentation, course, and relevant interventions have taken place. We identified articles for review primarily by conducting a Medline search using the subject headings dementia, mild cognitive impairment, Alzheimer's disease, vascular dementia, frontotemporal dementia, and Lewy body dementia. Other relevant studies were elicited through a Medline search using the subject headings mental disorders and...

Martin Prince

Oscar Blanco-Sanchez

Ales Stuchlik

An international committee set up through the IAP for Health met to develop an action plan for dementia. Comprehensive international and national initiatives should move forward with calls for action that include increased public awareness regarding brain health and dementia, support for a broad range of dementia research objectives, and investment in national health care systems to ensure timely competent person-centred care for individuals with dementia. The elements of such action plans should include: 1) Development of national plans including assessment of relevant lifecourse risk and protective factors; 2) Increased investments in national research programs on dementia with approximately 1% of the national annual cost of the disease invested; 3) Allocating funds to support a broad range of biomedical, clinical, and health service and systems research; 4) Institution of risk reduction strategies; 5) Building the required trained workforce (health care workers, teachers, and others) to deal with the dementia crisis; 6) Ensuring that it is possible to live well with dementia; and 7) Ensuring that all have access to prevention programs, care, and supportive living environments.

Australian and New Zealand Journal of Psychiatry

Perminder Sachdev

Research briefing paper

Catrin Jones

This paper is published as part of the Assembly’s pilot Academic Fellowship Scheme, which enables academics to work at the Assembly on a specific project, for the mutual benefit of the academic and the Assembly. As Wales enters a new phase in tackling dementia this paper outlines examples of innovative work in Wales, the UK and internationally set in the context of the WHO Global Plan of Action on the Public Health Response to Dementia 2017- 2025.

Journal of Public Mental Health

Lee Knifton

Dementia is "a global challenge and a public health priority" according to Dr Margaret Chan, director general of the World Health Organization in a speech she delivered to a recent G8 summit on the condition. Her sentiments are shared by many current political leaders including Barack Obama and David Cameron, the UK prime minister who hosted the summit in London last year. He described it as "the biggest challenge we face today" (UK Department of Health, 2012). In addition to organising international initiatives, many countries including Australia, Japan, Korea, Netherlands, Norway, France and the UK have also recently published national dementia plans setting out their own strategies to tackle this challenge (Alzheimer's Disease International). The plan outlined by the Obama administration is possibly the most ambitious and has called for an effective treatment by 2025 (US Department of Health and Human Services, 2011).

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Department of Psychiatry, University of Liverpool, Liverpool, UK

Mari Lloyd-Williams

Professor, Primary Care and Mental Health, Liverpool Health Partners and University of Liverpool, Brownlow Hill, Liverpool L69 3GB, UK

Background:

Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic.

This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia.

Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer.

Conclusion:

This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the ‘expert’ in terms of their knowledge of their relatives’ care and preferences.

What is already Known About the topic

• Dementia is a life-limiting illness, but the diagnosis of dying can be difficult.
• Many patients die with dementia in hospital or in care homes.

What this paper adds

• This qualitative study of family carers revealed that communication with the person with dementia and also with professionals was a major issue.
• Family carers felt worn down by the constant ‘battles’ they perceived they experienced in negotiating the healthcare system on behalf of the person with dementia.
• Dying of dementia was traumatic for family carers of those interviewed with little support and privacy and frequently no support from specialist palliative care.

Implications for practice theory or policy

• This study suggests that specialist or generalist palliative care is frequently not available for those with dementia dying in hospital or in care homes.
• Sensitive communication and respect for family carers is a basic necessity of good end-of-life care.
• Where advance care plans are not in place, family carers should be consulted and considered within the clinical decision-making process

Introduction

It is estimated that there are approximately 820,000 people with dementia in the United Kingdom, 1 and the incidence and prevalence of dementia will continue to rise with an ageing population. It is predicted that deaths from dementia in the United Kingdom will increase from around 59,000 per year in 2014 to around 220,000 per year by 2040. 2

Research suggests that people with dementia receive poorer end-of-life care, 3 – 5 inadequate pain relief, and limited access to palliative and hospice care. 6 – 9 Studies exploring end-of-life care for people with dementia have focused mainly on 24-h care environments, that is, hospital, nursing, and residential care, and frequently, the focus of research has been with paid carers and their understanding and approach to care towards the end of life. There is relatively little research and literature exploring personal experiences of family carers who have cared for a loved one with dementia up to and including death. Dementia is a challenging illness, and in the later stages, there is not only cognitive deterioration but also physical deterioration in terms of mobility, issues with nutrition, faecal and urinary incontinence, and in the later stages becoming bedfast.

In a study to explore decision-making at the end of life, interviewing carers and professionals, uncertainty and poor communication were reported as the main areas of difficulty. 10 A further qualitative study of professionals, along with people with dementia and family carers, reported seven key areas namely timely planning of discussions around end of life; recognition of patient being at the end of life and provision of supportive care; co-ordination of care; effective working relationships with primary-care teams; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. 11

Longitudinal studies are particularly valuable to capture experiences at different time points and a study from the Netherlands 12 to determine what should be available to enable good palliative care for people with dementia at the end of life, interviewed 10 family carers of people with dementia in focus groups at three time points. Family carers wanted familiarity at the end of life of having familiar people caring for the person with dementia and also wished care to be at home if at all possible and communication with professionals that they knew and trusted.

The aim of our study and this paper was to explore the direct personal experiences of a diverse group of family carers who had cared for people with dementia in the last year of life and up to death.

We report additional analysis of our national study 4 which recruited bereaved family carers from Scotland, England, and Wales. Participants were recruited via organizations, for example, Alzheimer’s Society and Age UK, social media, and community networks in order to obtain a broad range of experiences of care during the last year of life, and this paper reports additional analysis from the original study. As data collection and analysis progressed recruitment became more focused on certain under represented groups and locations, that is, male carers, semi-rural and rural areas. To facilitate this process, organisations such as the Alzheimer’s Society, Age UK, and Alzheimer’s Scotland were contacted and invited to publicise the appeal through newsletters and carers groups held within local branches. Full ethical approval from University of Liverpool ethics committee was obtained (RETH000206). Inclusion criteria included unpaid carer of someone with dementia in their last year of life and at the time of death; aged 18 years or over; death to have occurred within the last 5 years in any care environment (family home, care home, and hospital). Exclusion criteria included paid/formal carers; under 18 years of age; death occurred more than 5 years previously.

Family carers were invited to contact the first author if they were interested in participating in the study and were sent an information pack which included an information sheet and reply letter to invite the first author to contact them. Following written consent being obtained, interviews were conducted with participants and digitally recorded and transcribed verbatim. Interviews lasted between 30 and 80 min. Interviews were conducted face to face usually at the participants home, with a small number being conducted by telephone. The interview process was informed by narrative interviewing, 13 with the unstructured narrative interview designed to provide an opportunity for the participant to give a detailed account of a particular experience, event, or point in time.

Participants were encouraged to tell ‘their story’ as a narrative with minimal interruption from the first author which ensured events and issues important and significant to the participant were reported. The participants were encouraged to talk about the diagnosis and illness trajectory; what support was offered and how effective was support in the last year of life; were palliative care needs addressed; to discuss what happened in the last few weeks of life. This method was utilised in preference to a semi-structured interview design would have only allowed participants to select isolated parts from their own story and in effect filling in or completing pre-existing narratives by the first author. Field notes were collected to supplement the interpretation and analysis. The study was ongoing for 3 years with 18 months of this time spent on data collection. This prolonged period of time in the field helped the researcher who was an experienced mental health practitioner to acclimatise to researching an area of extreme sensitivity. It also supported development of skills that would help with conducting and understanding interviews and facilitated reflexivity which contributed to incorporating issues and theories from previous interviews into subsequent interviews. The field notes added to the context, nature, and circumstances of the interviews carried out.

During the research process and throughout interviews, the researcher attempted to create a climate of openness with participants in an attempt to reduce researcher effect. All participants were fully aware of the nature and purpose of the study. All transcripts were returned to the participants for verification and to ensure that participants’ narratives were recorded correctly. There were no requests for amendments following this process; however, many participants stated they had valued taking part and appreciated having a copy of their interview.

The study adopted a qualitative approach informed by phenomenology 14 and grounded theory. 15 , 16 Phenomenology as a philosophical stance due to the lived experiences being sought and grounded theory informed the study in an attempt to interpret and explain these experiences.

Analysis of the data using comparative analysis 15 commenced from the outset of data collection and transcripts were read by all authors and re-read by the first author. Line-by-line coding of transcripts, memo writing, development of categories, and emergence of themes followed and emerging themes were compared, discussed, and agreed by all authors who were part of the study team. Data saturation began to occur when recruitment reached 35 participants and a further five participants were recruited to ensure saturation had been fully achieved.

Participants were recruited from the North West of England: n = 21, North East of England: n = 4, Wales: n = 9 and Scotland: n = 6 and included participants living in urban, rural, and semi-rural areas. Thirty-one female and nine male family carers who had cared for people with dementia with an age range of 69–96 years (mean age 81.5 years) participated and included all socio-economic backgrounds. Efforts were made to recruit family carers where death had occurred in different care settings; however, the majority of participants had experienced death in hospital or care home with only four participants caring for a person with dementia within their family home until the end of life. No deaths had occurred in a hospice. Within the study, 22 people with dementia had died in Hospital, 14 within care homes and four within the family home ( Table 1 ) and the majority of family carers had experienced care in several different care settings in the year prior to death. Participants described how they had cared for the person with dementia for between 18 months to 20 years before death with a mean of 5.1 years and median of 5 years in a caring role. The deaths had occurred between 3 months and 5 years (mean 1.7 years, median 1.3 years) prior to the interviews.

Information regarding participants (reused with permission from Crowther et al. 17 ).

The mean length of time from formal diagnosis to death was 4.5 years; however, most participants reported cognitive problems for some time prior to diagnosis. Four participants were family carers for people who had a dual diagnosis of cancer and dementia. Of these, three experienced specialist palliative care services: one in a day hospice: one hospital-based and one a community-based specialist palliative care service. From the evidence of the interviews, no patient with a dementia-only diagnosis received specialist palliative care.

As a result of constant comparison of individual transcripts, 23 categories emerged from the data. Over a period of time, data were reduced further, and the following key themes began to emerge: communication; family carers as experts; the hard work of caring; and living and dying with dementia in the face of uncertainty. An example of an interview coding is included in Table 2 .

Examples of initial coding from text and memos.

Communication

Difficulties with communication in its broadest sense were a major theme to emerge from this study. Family carers knew the person and had established non-verbal means of communication

I knew when she was cold she would physically put her arms together and when she was too hot she would be unbuttoning her blouse I tried to get the staff to understand we had to look for non-verbal . . . when they don’t speak at all you’re having to work out what their needs are. (Family carer 36)

Family carers searched their creative knowledge of their loved ones in attempts to communicate and connect with the enduring self. This would involve playing music or having certain activities on a television channel they knew the person with dementia once enjoyed.

there was nothing we could give him, he had a television, we put it onto what we thought he enjoyed . . . in the summer he always liked to watch cricket we would tend to put that on . . . he liked hymns, certain singers, we tried to do this. (Family carer 39)

Just ‘being’ with the person with dementia became increasingly important for some family carers as the disease advanced and communication skills diminished.

Visiting . . . I couldn’t wait to get there . . . I was there every afternoon all afternoon for a fortnight . . . I went in everyday I held her hand . . . she knew me — I held her hand. (Family carer 40) I’d stay right through to evening . . . sit with mum just sit . . . talk to her . . . put the tv on . . . put some music on or I’d just sit there . . . (Family carer 31)

Communicating about care issues as the person with dementia deteriorated was another source of distress. The language used to inform family carers that the person with dementia was in the terminal phase was not always clear and added to the chaos and uncertainty experienced.

‘he’s very, very poorly, still very poorly’ they said. (Family carer 30)

Occasionally, a deterioration was reported and interpreted to mean the person with dementia was close to death. There appeared to be a subliminal message for family carers within the words used.

“about half past ten the staff nurse rang B and said “her breathing’s become a bit distressed” I said “right I’ll come now.” (Family carer 22)

A number of participants expressed concerns in relation to different languages and different cultures within UK hospitals and care homes. The quote below was the experience of a daughter whose father was Polish and reverting to his native language as dementia progressed – he had attended a memory clinic in the last year of life and the following were the daughter’s recollection of the clinic visit

he couldn’t write his name . . . my dad was Polish- the doctor was from another country . . . you can imagine . . . it were like never the twain shall meet. She wouldn’t let us stay in the room with him while she asked him these questions and we’d have to stand outside, we could hear what she was saying and she was getting quite agitated my dad wasn’t responding . . . he didn’t know how to respond . . . basically she wasn’t interested in him . . . she said there was no point giving him any tablets. (Family carer 21)

As dementia progresses, people often revert to the use of their native language and may totally loose their skills to speak or understand their second or third language. The importance of being able to communicate in the native language in order to facilitate assessment of cognitive deficits is demonstrated below.

she was lovely and spoke Welsh to him, she went through this rigmarole of questions and drawing then she said “will you write me a sentence?” . . . I thought “what’s going to happen here?” he said “of course I will” he picked up the paper, he wrote a sentence in Welsh do you know what that sentence was translated?.” it’s wonderful to have a young lady like you to visit me. (Family carer 39)

As dementia progressed, the ability to converse became more limited, and some family carers went to great lengths to choose 24-h care facilities which employed staff who could speak the native language of the person with dementia.

I really wanted him to go to a Welsh speaking care home I wanted people there who spoke to him in his mother tongue, that was very important. Not all of them did speak Welsh, but most of them understood Welsh and would know enough words to communicate. (Family carer 39)

Informal family carers as experts in care

Family carers within the study believed they were the “experts “ in care and in care preferences of their relative – in most cases, they had lived with, known, and cared for the person with dementia for many years prior to diagnosis and had witnessed the changes in the person with dementia following the diagnosis. Participants expressed specific wishes in relation to aspects of care. Informal family carers believed their level of knowledge and skill acquired, over many years of caring, was devalued, negated, and frequently ignored by professionals. Some expressed explicit wishes relating to the care of the person with dementia. The following quote was a patient with dementia and a cancer diagnosis – his wife found it unbearable that the oncologists insisted on informing her husband of his diagnosis at every clinic visit. Due to his dementia, he had no memory of previously being told his diagnosis but had sufficient insight to be devastated each time he was told his cancer diagnosis.

it was my belief he’d not got the mental capacity to know, every time he was told it would be like telling him again. She (oncologist) was really quite . . . not aggressive . . . it was her opinion he should know that was it I think relatives know - well I knew my husband better than anybody else, we’d been married for forty five years and it wasn’t appropriate to tell him . . . (Family carer 32)

As is demonstrated in the quote below, one of the most complex but important areas faced in caring for those with advancing disease is deciding when and how far to intervene when patients deteriorate. Including family carers in such decisions and listening to their views, where possible, can support the decision-making process and help arrive at solutions based on knowledge of that person and what maybe in their best interests.

they said about feeding him through his nose, I said “no” I knew he’d be traumatised, I knew he’d pull it out, he wouldn’t like being held down having that done so I said “absolutely no, no way that” When I go back in the afternoon they’d done it, he’d been very traumatised, I was furious. (Family carer 07)

The difficulty for family carers in hospitals when staff did not take notice of family carers’ views is illustrated below from the daughter of a patient who was sectioned (detained in a psychiatric hospital against their will) and admitted to a psychogeriatric ward

. . . he got put into ward X when he was sectioned, . . . “you’re in here Mr. H because you’ve hurt your wife” and I used to think, why are they saying that to him–how can you say that to somebody whose mind is like that . . ., It would make him so angry and he’d say “I do not, I do not hurt my wife!” you know and I feel me dad really, really suffered because he would not have hurt a fly and to keep being told . . . He’d say “this is punishment” he’d sit on ward X with his head in his hands and say “ ooh, they’ve said I’ve hurt P (wife), I love P, I’d never hurt P” you know and they were telling him all the time. It was terrible, it was absolutely dreadful and then he went into the nursing home thank God but I do feel for these people who haven’t got any family–what happens to them? (Family carer 09)

The hard work of caring

All interviews were retrospective accounts of events which had occurred months or some years previously, but recollections were vivid and emotional. Powerful words such as “fight,” “battles,” and “traumatic,” illustrated the difficulties confronting families and the hard work involved. Choice of words and language used were indicative of the enduring effect of the experiences and memories for the study participants.

then began the battle to get him out of hospital, it was a battle . . . they knew I wanted to get him home as soon as possible, it took 21 days to get him home, they told me it’s within the time limit. I pointed out to them S died 21 days after he came home so it may have seemed within their time limits, but it wasn’t within our time limits . . . we lost valuable time where he could have been at home didn’t we? (Family carer 32) I’d have to put him to bed, I think as a daughter, I think that’s been one of the hardest things which I have got over now, it would have made me cry so much it was just so upsetting. This fantastic man who’d done so much for so many other people, just become this shell terribly frightened, he just didn’t know where he was, kept asking for his own mother, I think quite a few times he thought I was his mum putting him to bed which for a daughter to think your father thinks you’re his mother was so very, very upsetting . . . (Family carer 03)

There was also the difficulties perceived by the attitude of hospital staff towards patients with dementia and pressure to move patients quickly to a care home. This very event for many families was traumatic, and the importance of going to a care home the family had chosen and wanted was important as illustrated below

. . . there was quite a bit of pressure actually from the local NHS here basically to get him out which I resisted because I wanted him to go into this particular nursing home, they wanted us to put him somewhere else . . . and wait for a bed . . . I felt that it was much better in one stage. (Family carer 39)

Living and dying with uncertainty and unpredictability – the last days

The level of uncertainty family carers of people with dementia may experience as death approached or appeared to approach caused distress to many family carers. Although told many times that a person with dementia may be near death, death could sometimes occur suddenly and unexpectedly. Uncertainty and unpredictability persisted sometimes over many months and occasionally years. Some family carers found themselves in situations where they were advised by medical staff the person with dementia was close to death only to see them recover, and for some, this occurred on several occasions during the disease trajectory and was a source of considerable anxiety and distress.

doctors were saying “he’s very poorly”, she was saying “you don’t know my dad, I’ll come in tomorrow, he’s going to be as right as rain, he’ll be off this mask” They were sort of like “right, right ok” that’s what happened to us so many times, then it got to Monday morning they said “he’s not going to last 24 hours. . . . (Family carer 20) he was a fighter that time he went in with pneumonia he wasn’t expected to come out . . . but he did. (Family carer 37)

Most family carers experienced death within a hospital setting and although for some, the care experience was good, it was common for people with dementia to die on an open busy ward with the promise of transfer to a side room not materialising.

it was horrible the way me dad died, absolutely horrible . . . it was dreadful . . . if he’d have been in a side room . . . had a little bit of dignity where it could have been quiet . . . (Family carer 9)

Of the four patients who had a dual diagnosis of cancer and dementia, one participant reported that her mother who had lung cancer and dementia had received day care in a local hospice while at home but died in a care home. Individual experiences of specialist palliative care services varied with one referral to a hospital team advising the family they were unable to help – this person died at home 4 weeks later. Only one family experienced palliative care in a hospital setting for a patient who had a diagnosis of gastric cancer and dementia. This participant was the only participant to mention the possibility of her father going to a hospice for end-of-life care, although this did not happen and he died on a hospital ward.

The one thing that I would have liked is for him to perhaps not have to stay so long in a clinical setting, he didn’t like hospitals at all and possibly, I think, we did discuss this with the doctors. . . . I think they thought that it wasn’t worth arranging to move him to a hospice or whatever because he wouldn’t survive . . . (Family carer 7)

Our study aimed to explore the experience of dementia in the last year of life in a diverse group of bereaved family carers from the UK in an attempt to identify and interpret what were the specific perceived needs of people with dementia and of their families at the end of life. Although a retrospective account, in all cases, carers gave an emotional and vivid account of events leading up to the death of the person with dementia. Communication in its broadest sense was the overarching issue of concern within this study and communication impacted on every aspect of care at the end of life.

As previously reported 18 , 19 communication issues were the main areas of concern in this study and were perceived as problematic by family carers in a range of circumstances, environments, and contexts and influenced every experience of care received. It was evident how difficulties with communication impacted on care and in this study, the experiences of communication were mostly negative. Non-verbal messages such as body language or para-verbal messages including tone and volume of voice have equal importance to verbal components of communication. 20 All aspects of communication influenced family carers’ experiences of end-of-life care. It is acknowledged that for many who work in health and social care in the United Kingdom, English is not their first language. Family carers experienced difficulties communicating with professionals in some circumstances and expressed concerns regarding the person with dementia who already had compromised communication skills as a result of their illness. For Welsh speaking family carers in Wales who participated in the study in particular, there was concern regarding the lack of access to support and care within their own native language and lack of access to care that was culturally acceptable. Sensitive communication and respect for family carers is a basic essential of good end-of-life care as is ensuring that family carers understand what is being said and listening to the family carers views and opinions.

Carers as experts

An expert is defined as ‘a person who is very knowledgeable about or skilful in a particular area’. Development of competent skills and extended knowledge about a particular subject, place, issue, or person is crucial to being assigned the title ‘expert’. There appeared to be a combination of experts in this study. Those who were professionals providing a service in which they were viewed as experts by lay people (i.e., the family carers interviewed for the study) and lay people (the family carers themselves) who considered themselves as experts in the care of the person with dementia. There was evidence of conflict and criticism mainly attributable to lack of acknowledgement and value perceived to be placed upon informal family carers expert knowledge and skills by professionals. Family carers felt they knew the person with dementia extremely well and based proxy decisions and choices on vast prior knowledge. They felt qualified as experts in care and found themselves, at times, in conflict and confrontation with professionals. Family carers considered themselves as expert in terms of knowledge and care of their loved ones 21 and what was in their best interests, while professionals appeared to consider themselves the experts in relation to dementia, disease trajectory, symptom management, and treatments. Families of people with dementia have frequently been living with the condition for a number of years prior to diagnosis and may have been making decisions based on their knowledge and previous wishes expressed by the person with dementia. These may, or may not, have been documented in a care plan. It was clear from this study that key areas of decision-making which created difficulties for the expert family carers and professionals alike included artificial hydration and nutrition, communication, and hospital admission. 22

Two recent papers based on a qualitative study of 30 bereaved carers of patients who had died of Lewy Body Disease also reported the lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. 23 , 24 Within our study, carers perceived professionals as inflexible; policy and procedures appeared to be followed regardless of information shared by informal family carers. It should be noted, that in this further analysis of a retrospective study, none of the participants in the study had an Advanced Care Plan (ACP); 25 , 26 however, a recent paper 27 reported that of over 6000 patients presenting with an acute medical emergency, only 4.8% had an ACP available for admitting medical team. In the study, 27 although 9.5% of patients over 80 and 12.6% of patients over 90 had an ACP, it is clear that the vast majority of older people, many of whom will have dementia as primary or co-morbidity do not have any documentation to state their wishes. Advance care planning (ACP) is a process of reflection on and communication of a person’s future health care wishes; 28 however, the process itself can be challenging as a recent systematic review reported and uncertainty with decision-making requires strategies and support to aid this complex process. 29 Since introduction of the Mental Capacity Act in the United Kingdom in 2005, 30 there has been increasing focus on ACP and treatment directives. This is in anticipation of loss of capacity and ability to make informed choices regarding treatments and wishes as capacity is lost and death may be approaching. In dementia, timing is crucial, as the person with dementia can be involved at an earlier phase but not necessarily later due to cognitive decline; however, for people newly diagnosed with dementia, it can be difficult to anticipate future care needs. What appeared most challenging for family carers within this study was the fact they felt they were not being listened to nor recognised by professionals.

The effects and impact of being a family carer for people with dementia has already been reported in the literature. 31 , 32 It became apparent that there were different elements to the hard work of caring namely the practical hard work and organisation of care; the physical hard work and the caring tasks required on a regular basis to support daily living and the emotional hard work related to burden, stress, anxiety, and guilt. The constant ‘battles’ family carers described when trying to negotiate the world of professional care was a drain on their emotional resources and such situations impacted on family carers causing stress and distress. 33 These findings are also echoed by a study which found that bereaved and current carers found it exhausting to co-ordinate care for the person with dementia especially regarding end-of-life care. 34

Uncertainty has been described as a common experience during illness, and dementia is no exception. 35 , 36 It could be argued that dying with dementia may be challenged with more uncertainty due to the potential length and unpredictable nature of the disease trajectory. The narratives shared within this study appeared to be fraught with chaos. Nothing within the last year of life including death itself appeared to be ordered or predictable. Issues regarding prognostication and dying in life-limiting illness remain problematic, and transfer from nursing home to hospital at end of life is common. 37 Many people with dementia also have co-morbidities. 38 It was of note that specialist palliative care services were rarely involved, and involvement in this study appeared limited to those with a dual diagnosis of dementia and cancer. Palliative care services for people with dementia were and are being developed but remain limited 17 , 39 and the debate regarding early introduction of palliative care in dementia continues. Currently, in the United Kingdom, less than 1% of people with dementia in the United Kingdom die within a hospice. In the United Kingdom, Admiral Nurses who are specialist nurses supporting people with dementia and their families are working in many areas including acute hospitals and can support both families and staff who are caring for patients with dementia at the end of life. Our findings in this study echo those of Bolt et al. 40 who found family members wanted to be recognised as an important caregiver and that a lack of person-centred care was an issue for many family members throughout the dementia illness.

Strengths and limitations

To our knowledge, this is one of the largest qualitative studies exploring the needs of patients with dementia at the end of life from the perspective of a diverse sample of bereaved family carers. Although every effort was made to include people from different ethnic backgrounds, this was not possible which limits the extent to which findings can be applied in other populations. The self-selecting nature of the sample could represent family carers with a more difficult experience wishing to participate and to share their experiences and those family carers who wished to participate may have been more engaged in caring for the person with dementia than the average family carer, and their desire to be heard, therefore greater. Conversely, it is possible that people with worse experiences of end-of-life care may not have wished to re-live the experience in an interview and that those interviewed for the study were possibly portraying better experiences of care. This was a United Kingdom–based study, and we acknowledge that findings may not be generalizable to other countries where provision of care is different.

Conclusion and recommendations

This large qualitative study of family carers revealed that communication in its broadest sense with the person with dementia and with professionals was a major issue. Family carers felt worn down by the constant ‘battles’ they experienced in negotiating the healthcare system on behalf of the person with dementia. Dying of dementia was frequently traumatic for family carers with little support and privacy and no support from specialist palliative care. Despite many publications and research on palliative care and dementia, 41 it is still important that all research is based on the experience of patients or their family carers who at the end of life are the advocates and the voice.

This paper is being written as we hopefully begin to emerge from the COVID-19 Pandemic which has seen a disproportionate number of people with dementia die of COVID-19. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the ‘expert’ in terms of their knowledge of their relatives’ care and preferences.

Communication with family members and determining their views regarding care at the end of life is essential as is ensuring people with dementia can die in their usual place of care among familiar surroundings. Although there is a belief that an ACP appears integral to aid delivery of good end of life for people with dementia, their completion can be problematic and very few people currently have a completed ACP. In such situations, it is essential to discuss with and include close family carers as partners in the care of the person with dementia as they know the person. If end-of-life decisions have not previously been discussed, family carers will be able to advise what may be the best care based on prior knowledge of what the person with dementia may or may not want. It is unclear whether the increase in numbers of people with dementia dying at home in the United Kingdom will continue, but what remains clear is the need for excellent communication along with support and respect for carers acknowledging their expertise, which with co-ordinated care will allow those with dementia to die in comfort and with dignity in the location of their choice.

Acknowledgments

The authors thank St Luke’s Hospice Winsford for a research grant which supported this study, and they thank all the family carers who so generously gave their time to be interviewed.

Ethics approval and consent to participate: Full ethical approval was awarded to this study by the University of Liverpool ethics committee. The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All data collected for this study was with the full informed consent of all participants. Full ethical approval from University of Liverpool ethics committee was obtained for this study (RETH000206).

Consent for publication: All family carers who participated in the study consented to the publication of anonymised qualitative data.

Author contribution(s): Jacqueline Crowther: Data curation; Formal analysis; Investigation; Methodology; Writing – review & editing.

Kenneth Wilson: Formal analysis; Project administration; Writing – review & editing.

Mari Lloyd-Williams: Conceptualisation; Formal analysis; Funding acquisition; Investigation; Methodology; Supervision; Writing – original draft; Writing – review & editing.

Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research grant St Luke’s Hospice Winsford, Cheshire, UK.

Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Availability of data and materials: Raw data as in qualitative interviews is available by contact with authors

Contributor Information

Jacqueline Crowther, Academic Palliative and Supportive Care Studies Group (APSCSG) and Primary Care and Mental Health, University of Liverpool, Liverpool, UK.

Siobhan Horton, St Luke’s Hospice, Winsford, UK.

Kenneth Wilson, Department of Psychiatry, University of Liverpool, Liverpool, UK.

Mari Lloyd-Williams, Professor, Primary Care and Mental Health, Liverpool Health Partners and University of Liverpool, Brownlow Hill, Liverpool L69 3GB, UK.

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Dementia is a disease, not a person: exploring the experiences of people with dementia, carers and mental health practitioners on dementia and dementia services via a qualitative evaluation of a community-based memory service.

PARKER, ETHNA,THERESE (2015) Dementia is a disease, not a person: exploring the experiences of people with dementia, carers and mental health practitioners on dementia and dementia services via a qualitative evaluation of a community-based memory service. Doctoral thesis, Durham University.

This thesis presents a case-based qualitative evaluation of a community-based memory service for people with dementia and carers, informed by an advisory group including people with dementia and carers. Drawing on theoretical frameworks of critical and narrative gerontology, interviews with service users, carers and community mental health team staff generated rich accounts of experiences of using and delivering the memory service. Data from people with dementia and carers were analysed thematically and built on work by Willis et al. (2009) to generate quality indicators for dementia care. Analysis of data from CMHT staff drew on a framework of collective leadership devised for use in the NHS by the Center for Creative Leadership and The King's Fund (2014a). Findings reveal rich insights into: i) the everyday challenges faced by people with dementia and carers, ii) the positive contributions they can bring to the evaluation and development of services for people with dementia and carers and iii) the important role of collective leadership in the provision of high quality services for people with dementia. The thesis extends the current knowledge base relating to people with dementia and carers by developing particular understandings of how they can contribute to the evaluation and development of memory services.

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Dementia: Causes, Treatments and Research (Neuroscience) MSc

London, Bloomsbury

The Dementia: Causes, Treatments and Research (Neuroscience) MSc, offered by the UCL Queen Square Institute of Neurology, tackles one of the biggest global health problems facing society today. It provides research-oriented and cutting-edge training in the study of dementia and its scientific basis, delivered by international leaders in the science and practice of dementia.

UK tuition fees (2024/25)

Overseas tuition fees (2024/25), programme starts, applications accepted.

Applications closed

Applications open

• Entry requirements

A degree in medicine or a minimum of an upper second-class Bachelor's degree from a UK university of an overseas qualification of an equivalent standard in psychology, biological sciences, biology, neuroscience, biomedical sciences, anatomy and physiology. Graduates from other scientific disciplines will be considered on an individual basis.

The English language level for this programme is: Level 1

UCL Pre-Master's and Pre-sessional English courses are for international students who are aiming to study for a postgraduate degree at UCL. The courses will develop your academic English and academic skills required to succeed at postgraduate level.

Further information can be found on our English language requirements page.

Equivalent qualifications

Country-specific information, including details of when UCL representatives are visiting your part of the world, can be obtained from the International Students website .

International applicants can find out the equivalent qualification for their country by selecting from the list below. Please note that the equivalency will correspond to the broad UK degree classification stated on this page (e.g. upper second-class). Where a specific overall percentage is required in the UK qualification, the international equivalency will be higher than that stated below. Please contact Graduate Admissions should you require further advice.

About this degree

The programme brings the latest bench-top research findings to the bedside, develops and integrates basic and clinical neuroscience skills, and equips students for future careers in the clinical practice or basic neuroscience of dementia. 

Who this course is for

This course is ideally suited to lab scientists who want to appreciate the clinical and human resonance of neurodegenerative diseases and current concepts and challenges in their diagnosis and management; and equally suited to psychologists and clinicians who want to explore the neurobiological foundations of dementia practice and cutting-edge research. A major mission of the course is to inspire dialogue and understanding between the many disciplines that are shaping the future of dementia research and treatment.

What this course will give you

This programme is unique in linking neuroscientific foundations with specialist clinical skills and knowledge in dementia.

The programme integrates the expertise of UCL Queen Square Institute of Neurology with affiliated departments at the forefront of the global mission to defeat dementia, and is taught by international leaders working closely together to link bench and bedside as part of UCL's Dementia Strategy .

The programme builds on UCL's global perspective, targeting students in developing as well as developed countries to drive future training opportunities. The programme emphasises active student participation and enquiry, develops practical skills, and offers unparalleled exposure to laboratories and patient-based teaching.

The foundation of your career

This unique programme will equip graduates with in-depth knowledge of dementia diseases and their treatments; strong, practical research skills that could facilitate doctoral or postdoctoral research in the field; and transferable scientific communication skills. This experience could support further doctoral studies and applications for fellowships. . 

Employability

For scientists and psychologists, the programme can lead to future placements in clinically oriented research environments or clinical training. For clinicians, this is an excellent opportunity to gain a higher qualification at a world-leading centre of excellence in neurodegeneration research, which could be tailored to a variety of future roles in clinical, research and management fields. Many students have gone on to pursue PhDs and research careers in the fields of dementia and neurodegeneration.

The Queen Square Institute of Neurology is home to some of the world's most influential academics. By studying with us, students will have the opportunity to be part of the next generation of experts in neuroscience. We are home to some of the world's most influential researchers and offer a wealth of scientific and clinical expertise, from laboratory benches through to patient care.

Many of our lecturers are also NHS consultants working at The National Hospital for Neurology and Neurosurgery which is a leading centre for the diagnosis, treatment and care of patients with a wide range of neurological conditions.

Alumni networking events are provided for current and former students to discuss their experiences and career options after completing their degree. Students also take part in a research project symposium to share their work with peers and early career researchers from UCL, and some students may be able to present their work at local or international conferences depending upon the research project chosen.

Teaching and learning

This programme is delivered through a combination of lectures, seminars, tutorials, journal clubs, and patient-based teaching sessions supplemented by self-directed learning. Students are encouraged to actively contribute to teaching sessions and learn through enquiry. The research project provides students with an authentic research experience to develop their scientific planning, reporting and critical analysis skills as well as project-specific practical skills. This programme uniquely provides extracurricular opportunities for students to develop a range of communication skills during journal club discussions, project symposium oral presentations and discussions with people with lived experience of a rare dementia.

Assessment is through ongoing formative assessments (for example interactive discussions and presentations), timetabled summative assessments (including unseen short-answer examinations, multiple choice question (MCQ) examinations, essays, and presentations) as well as a 10,000 word written research project dissertation.

For each 15 credit module there will be approximately 20-25 hours of contact hours, with around 120 hours of self directed study.

The programme consists of five compulsory modules (75 credits), two or three optional modules (total value of 45 credits) and a research project (60 credits).

Students must complete four of the compulsory modules (60 credits) and up to 30 credits of optional modules in Year One. In Year Two, students are required to complete the remaining optional modules (total 45 credits across both years), the final core module Research Methods and Introduction to Statistics (15 credits), and the research project (60 credits).

Compulsory modules

Optional modules.

Please note that the list of modules given here is indicative. This information is published a long time in advance of enrolment and module content and availability are subject to change. Modules that are in use for the current academic year are linked for further information. Where no link is present, further information is not yet available.

Students undertake modules to the value of 180 credits. Upon successful completion of 180 credits, you will be awarded an MSc in Dementia: Causes, Treatments and Research (Neuroscience).

Accessibility

Details of the accessibility of UCL buildings can be obtained from AccessAble accessable.co.uk . Further information can also be obtained from the UCL Student Support and Wellbeing team .

Fees and funding

Fees for this course.

Programme also available on a modular (flexible) basis .

The tuition fees shown are for the year indicated above. Fees for subsequent years may increase or otherwise vary. Where the programme is offered on a flexible/modular basis, fees are charged pro-rata to the appropriate full-time Master's fee taken in an academic session. Further information on fee status, fee increases and the fee schedule can be viewed on the UCL Students website: ucl.ac.uk/students/fees .

Additional costs

International Students will bear any costs incurred in acquiring certification equivalent to DBS (Police check) in their home country. These checks are neccessary for any student who undertakes a clinical project based at University College London Hospitals.

For more information on additional costs for prospective students please go to our estimated cost of essential expenditure at Accommodation and living costs .

Funding your studies

UCL Queen Square Institute of Neurology International Excellence Scholarships - we are delighted to announce four fee reduction scholarships (worth £6,000 each) for overseas fee-paying students.

These are offered in celebration of Queen Square’s rich history of welcoming students from across the world who have contributed much to our community and wider society. In 2021-22 we had students from over 50 countries enrolled.

These scholarships are offered based on academic merit and are available for all our eligible postgraduate programmes (except for the MSc/Dip/Cert in Clinical Neurology).

For a comprehensive list of the funding opportunities available at UCL, including funding relevant to your nationality, please visit the Scholarships and Funding website .

Queen Square IoN International Excellence Scholarship

Deadline: 8 April 2024 Value: £6,000 towards tuition fees (1yr) Criteria Based on academic merit Eligibility: EU, Overseas

UCL Queen Square Institute of Neurology BAME Scholarship

Deadline: 8 April 2024 Value: £4,000 towards fees (1 year) Criteria Based on academic merit Eligibility: UK

UCL Queen Square Institute of Neurology Stroke Academic Excellence Scholarship

Deadline: 8 April 2024 Value: £4,000 towards fees (1 year) Criteria Based on academic merit Eligibility: UK, EU, Overseas

UCLFAA MSc in Dementia Scholarship (Neuroscience or Mental Health)

Deadline: 21 June 2024 Value: $20,000 (1 year) Criteria Based on both academic merit and financial need Eligibility: EU, Overseas

There is an application processing fee for this programme of £90 for online applications and £115 for paper applications. Further information can be found at Application fees .

When we assess your application we would like to learn:

• why you want to study Dementia Neuroscience at graduate level?
• why you want to study Dementia Neuroscience at UCL?
• what particularly attracts you to the chosen programme
• how do your academic and professional background and skills meet the demands of this challenging programme?
• where would you like to go professionally with your degree?

Together with essential academic requirements, the personal statement is your opportunity to illustrate whether your reasons for applying to this programme match what the programme will deliver.

Students are advised to apply as early as possible due to competition for places. Those applying for scholarship funding (particularly overseas applicants) should take note of application deadlines. The academic merit of the CV and application will be considered in awarding bursaries, which are potentially available to any student applying for this degree.

Please note that you may submit applications for a maximum of two graduate programmes (or one application for the Law LLM) in any application cycle.

Choose your programme

Please read the Application Guidance before proceeding with your application.

Year of entry: 2024-2025

Got questions get in touch.

UCL Queen Square Institute of Neurology

[email protected]

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Dissertation

Building design for people with dementia: a comparative analysis of planning quality in residential aged care units

• Publisher URL

Quirke M (2019) Building design for people with dementia: a comparative analysis of planning quality in residential aged care units . Doctor of Architecture. University of Newcastle, Australia. https://nova.newcastle.edu.au/vital/access/manager/Repository/uon:35038

Abstract International literature consistently reports that more than half of people living in residential aged care have a diagnosis of dementia. Research findings in this field concur that well-designed physical environments can increase independence, enhance quality of life, and provide a drug-free means of improving the behavioural and psychological symptoms experienced by people living with dementia. Despite this, there has been limited research into how well the broad stock of existing residential aged care settings supports the needs of residents with dementia. This dissertation investigates the design quality of existing residential aged care units, with a focus on the impact of architectural planning layouts on overall dementia design quality. Specifically, the dissertation develops new knowledge in terms of three interconnected research aims. The first research aim is to evaluate and compare dementia design quality in the layout planning of NSW-based and international best-practice examples of residential aged care units. To fulfil this aim, the dissertation uses floor-plan layouts to evaluate the dementia design characteristics of ninety residential aged care units from New South Wales (NSW), Australia, and compares these against the characteristics of ninety-four published international best-practice examples. The second research aim is to determine whether the dementia-enabling characteristics of floor-plan layouts for residential aged care units in NSW have improved over the last four decades. This aim is addressed by correlating the dementia design evaluation scores, from the analyses undertaken as part of the first research aim, against the year of construction for each unit. The third aim of the research is to investigate the impact of five spatial planning factors on the dementia design properties of Australian and international residential aged care settings. The five factors are: the unit floor area, number of bed-spaces provided, floor area per resident, storey location, and whether purpose-built for dementia or not. The research undertaken for this aim builds on the results of the first two aims by undertaking correlation analyses between the identified attributes and the dementia design evaluation scores for each residential aged care unit. In order to fulfil the three aims of the research, a new evidence-supported dementia design evaluation methodology is developed. This method, derived from Fleming’s (2011) Environmental Audit Tool, forms the basis of evaluations undertaken of the layout planning of the ninety NSW-recruited residential aged care units, and ninety-four international units, considered to be exemplars of dementia design. This new design evaluation approach produces formal scored measures of dementia design quality across nine established dementia design principles. These evaluations help to identify strengths and weaknesses in the layout planning of individual units and allow comparisons of design quality between sets of units. The results developed in response to the first aim show that the international exemplars tend to provide higher quality building layouts, with NSW evaluation scores falling behind by a significant margin. The results include the findings that both the NSW and international sets perform well under three of nine established dementia design principles, whilst showing that the most significant differences between the sets occur under four of these principles. There is room for improvement across both sets, but especially so for the NSW unit layouts, having achieved, on average, less than half of the available dementia design quality scores for five of nine dementia design principles. Results from research undertaken to address the second aim show clear improvements in dementia design quality for NSW units over the evaluated period (1970-2016). The most recently constructed NSW units tend to achieve a significantly higher dementia design quality score than those built at earlier dates. International units, assessed for comparison, started at a much higher level of design quality, but also improved significantly over four decades. Analysis of the rate of design improvements between both NSW and international sets show that the dementia design quality of the broad stock of NSW residential aged care units has typically trailed behind the design quality standards of the international exemplars by about twenty years. Findings developed in response to the third research aim include evidence that higher quality residential aged care units have fewer resident bed-spaces and, possibly because of this, tend to be physically smaller. A more contradictory finding is that high scoring residential aged units tend to provide more overall floor area per resident. Results also show that higher quality dementia design tends to occur in units that are located at ground floor and be amongst those purpose-built for accommodating people living with dementia. While the three sets of findings in this dissertation provide valuable information for the aged care sector, the methods and approaches developed to investigate the aims of the research have the potential to be useful for both larger scale evaluations of existing residential care settings, and to inform the design process of future residential aged care settings. This research was undertaken in accordance with the University of Newcastle’s Human Research Ethics Committee Approval No. H-2014-0044.

Keywords Dementia; Design; Architecture; Building Layouts; Design Assessment

Notes Full document is stored in the university research data base at University of Newcastle, Australia. Access to full text is restricted by embargo until April 2021.

Dr Martin Quirke

Lecturer in Dementia, Ageing & Design, Dementia and Ageing

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• Ageing and Dementia

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• Dementia & Ageing

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Article Contents

Introduction, limitations, conclusions, conflicts of interest.

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Influence of Music Therapy and Music-Based Interventions on Dementia: A Pilot Study

• Article contents
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Rebecca Dahms, Cornelia Eicher, Marten Haesner, Ursula Mueller-Werdan, Influence of Music Therapy and Music-Based Interventions on Dementia: A Pilot Study, Journal of Music Therapy , Volume 58, Issue 3, Fall 2021, Pages e12–e36, https://doi.org/10.1093/jmt/thab005

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According to national dementia plan in many countries, the music implementation into the daily routine as an adjunctive therapy to medication treatment is common. However, the ability of long-term care facilities to implement individualized music therapy (MT) and music-based interventions is not sufficiently taken into account. This pilot study examined the frequency of use and acceptance of MT and technology-based music interventions (TBMI) as well as the influence of high and low usage of both interventions of dementia on behavioral and psychological symptoms (BPSD) at two timepoints. Furthermore, the influence on the combination of MT and TBMI of dementia within the nursing home setting on BPSD with a focus on agitation, apathy, depression, and quality of life at all timepoints was considered. In the present study, data from 30 people with dementia (PwD) aged on average 81 years were analyzed within an eight-week noncontrolled intervention study, including four-week follow-up. Initial outcome data indicated significant decreases at times T2 and T3 in agitation and apathy among PwD with a high usage of MT and TBMI than among those with a low usage. In general, reductions were obtained from all observed BPSD at all timepoints. Significant results were found only for agitation over time. Considering the demonstrated results, a long-term implementation of music within daily routines in nursing homes for PwD should be strived for.

Dementia and Therapeutic Treatments

Dementia, depending on its characteristics, negatively affects different cognitive domains—“memory, thinking, orientation, understanding, calculation, ability to learn, language, and judgment” ( World Health Organization [WHO], 2020a ). Approximately, 50 million people worldwide currently suffer from dementia, caused by Alzheimer’s disease or related diseases. In addition, the content and the intervention effort of the respective therapy methods vary depending on the severity and course of the disease.

Music Therapy and Music-Based Interventions

The American Music Therapy Association (AMTA) defines music therapy (MT) as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by an certified individual who has completed an approved music therapy program” ( AMTA, 2020 ). Music therapy can be used as an alternative therapy and can function as a medium for people with dementia (PwD) to engage more actively with their environment and to better express their emotions ( Elliott & Gardner, 2018 ; Götell et al., 2009 ). Although dementia is characterized in particular by a disturbance of higher cortical functions (such as memory, thinking, and judgment) ( WHO, 2020b ), PwD can often still remember the lyrics of songs they learned as children ( Hubbard et al., 2002 ). Long-term music memory is still intact for a long time in PwD and is less affected by the typical metabolic disorders and nerve cell loss. Long-term music memory is not located in the hippocampal area, where ordinary memories are stored, but in the supplementary motor cortex, which is responsible for complex, motor movements ( Jacobsen et al., 2015 ). The results of the study by Jacobsen et al. (2015) also suggest that long-term music memory is better preserved than short-term memory, autobiographical long-term memory, or language.

In addition, the use of MT in people with cognitive impairments and dementia can help improve the perceived quality of life and well-being ( Cho, 2018 ; Liesk et al., 2015 ) and may delay the progress of the disorder ( Kampragkou et al., 2017 ).

Furthermore, there are nursing homes that provide music-based interventions (MBI) additionally to MT. These MBI provide music with or without the credentialed therapist; however, they are not always individualized. Some studies mention the terms “individualized MT” and “group MT,” although they are in fact MBI ( Sakamoto et al., 2013 ; Sung et al., 2006 ). Since MBI are considered more a leisure activity than a therapeutic intervention, those services are not adapted to the individual needs and musical preferences of the PwD ( van der Geer et al., 2009 ). Individualized music is not only important in MT but also in MBI. Benefits of individualized MBI also show positive effects in terms of physiological, psychological, and emotional impacts ( Hebert et al., 2018 ; Huber et al., 2020 ; Ray & Mittelman, 2017 ; Thomas et al., 2017 ; Weise et al., 2020 ).

With regard to the music implementation in the daily structure of nursing homes, some European countries (such as the Netherlands, Luxembourg, Belgium, Great Britain, France, Norway, Denmark, and Finland) as well as other countries in the world (such as Australia and the United States) act according to the National Dementia Plan, which provided guidelines for this music implementation ( Alzheimer’s Disease International, 2020 ). The majority of music intervention studies within this setting of nursing homes consist of active MT and receptive MT ( Narme et al., 2014 ; Raglio et al., 2015 ), without including MBI. However, there is a lack of studies investigating the influence of technology-based music interventions (TBMI), for example, via mobile devices or TV, on Behavioral and Psychological Symptoms of Dementia (BPSD). In summary, little is known about the impacts of the use, acceptance, and interaction of MT and TBMI by PwD with BPSD in the context of long-term care settings.

Research Questions

Both the frequency of use and acceptance, as well as the impact of music therapy (active and receptive) in the context of TBMI on behavioral symptoms in PwD within nursing homes are rarely considered in the literature.

What was the frequency of use and acceptance of the different music interventions (MT and TBMI) offered to PwD in nursing homes?

This basic research question suggests the investigation of secondary research questions:

What is the relationship between use/acceptance and sociodemographic data (age, gender, and dementia)?

Does high versus low usage impact observed BPSD exhibited by persons with dementia?

What influence do the music interventions have on the BPSD such as agitation, apathy, depression, and quality of life over time?

Due to our focus on evaluating the influence of MT and TBMI for nursing home residents, the researcher (certified study director and study staff according to the international GCP guidelines) conducted a bicentric study to question PwD and their related persons (RPs). An RP is defined as a person who has maintained a social relationship with the PwD in daily life and is informed about his or her physical and cognitive limitations. Since the majority of PwD had few or no relatives, most of the RPs were professional caregivers.

Over a period of 14 weeks, the pilot study was conducted in three nursing homes with 30 PwD. Three nursing homes, two in Berlin and one in Stuttgart, Germany, took part in the study (1. nursing home in city area, no focus on specific diseases, 74 PwD in total; 2. nursing home in city area, focus on PwD with higher support and security needs, 69 PwD in total; and 3. nursing home in city area, closed gerontopsychiatry, focus on mental illness in old age, 69 PwD in total).

Inclusion criteria of PwD were a minimum age of 65 years, extensive independence (had to be able to participate independently in the musical interventions), and a clinically diagnosed dementia. The exclusion criterion was a lack of verbal expression (should be able to express music preferences or dislikes toward music songs).

All participants, the RP and the PwD themselves, in the case of the ability to consent or in the presence of relatives, were informed about the course and content of the study by providing written and oral study information. After that, all participants gave written informed consent. The selection of the PwD, who took part in the study, was made by the caregivers in the nursing homes. Due to the limited ability of all participated PwD to consent due to the severity of their disorder, the questionnaires were answered by an RP (external assessment questionnaires).

The study protocol was prepared in accordance with the standards of the Declaration of Helsinki and approved by the Ethics Review Committee and the Data Protection Committee of the Charité. All participants gave their written informed consent to take part in the study. In addition, the study is listed in the German Clinical Trials Register under the number DRKS00011552.

Treatment fidelity

The study team, the credentialed music therapists, the fitness trainer, as well as the caregivers were informed about the course of the study, the content, their tasks, and the goal of the pilot study before the study. The adherence and the fidelity to these general conditions for the music intervention were ensured before the study by manualized study protocols and manuscripts for each stakeholder, during and after the study by personal consultations and monitoring. The monitoring in terms of adherence to the fidelity of the protocol manual took place as part of the Dementia Care Mapping (DCM) observation (not part of this paper, submitted elsewhere).

An instruction session was prepared and conducted for the caregivers prior to the study, in which they were informed about the overall duration of the study, the content, the intervals, and the location of the music interventions. In addition, the caregivers were taught the exact use of the TBMI as well as the corresponding on and off times of the music devices (e.g., background music and music program in common room). In addition, the caregivers were able to ask questions during the training course and to relieve fears and concerns about the study.

After the instruction session, flyers were put up in the rooms where the regularly occurring music interventions were displayed. A study folder with all important details about the study and contact addresses for the study team was kept in the caregivers’ room. If necessary, questions and problems of the caregivers were clarified by telephone or in person. In addition, the functionalities of the music devices were tested and recorded at least 2–3 times per week.

The study was divided into four study phases. The baseline phase T1 (two weeks), followed by the eight-week intervention phase (T2 and T3), and the four-week follow-up phase (T4).

In T1, the Mini-Mental-Status Examination was conducted with the PwD. Moreover, sociodemographic data of the residents (e.g., age, gender, degree of care, and date of the first diagnosis of dementia) were recorded with questionnaires. In addition, information on the state of health was obtained from the attending physician. All questionnaires filled in by the RP for the PwD in the subsequent study phases (from T2 to T4) included questions on the following topics: instrumental activities of daily life that influence the behavior of PwD (e.g., disruptive behavior/agitation and social behavior/apathy, measured by the subscale of the Nurses’ Observation Scale for Geriatric Patients [NOSGER]; Wahle et al., 1996 ), depression (Cornell Depression Scale [CDS]; Alexopoulos et al., 1988 ), and quality of life (QUALIDEM; Dichter et al., 2016 ). Additionally in T2, questions were asked about expectations of MT and TBMI. In T3, questions were asked about the frequency of use and acceptance of MT and TBMI. To examine the influence of high and low usage on observed BPSD, calculations were made using data from the variable “frequency of use” at timepoints T2 and T3 (see Data Analysis). In fact, at timepoint T4, no music interventions took place. Moreover, in T4, data on the sustainability of MT and TBMI were collected.

Disruptive behavior/agitation and social behavior/apathy (NOSGER)

On a 5-point Likert scale ( never , occasionally , often , mostly , and always ), the RP evaluated the frequency of occurrence of the corresponding behavioral symptoms. A minimum score of 5 and a maximum score of 25 could be achieved for each dimension. Thus, low dimension scores meant no or only minor losses or disturbances, whereas high values meant significant losses or disturbances in the respective areas. The subscale “Social behavior” of the NOSGER questionnaire was used within this study to calculate the influence on apathy and the subscale “Disruptive behavior” for calculating the influence on agitation. In the following, disruptive behavior is used synonymously for agitation and social behavior synonymously for apathy. The NOSGER questionnaire has good psychometric characteristics in terms of reliability (test–retest reliability: rank correlation coefficient r s = .84 ≤ r s ≤ .92) and validity (criterion validity: sensitivity ≥ 48% and specificity ≥ 69%) ( Spiegel et al., 1991 ; Wahle et al., 1996 ).

Depression (CDS)

The occurrence of depression among the residents was measured by the CDS, in which a maximum score of 38 points can be achieved. A value of 8 points or more indicates an existing depressive disorder. Overall, the CDS has very good psychometric properties in terms of reliability (e.g., internal consistency: Cronbach’s α = .86) ( Amuk et al., 2003 ) and validity (e.g., criterion validity: sensitivity = 93%, sensitivity = 93%, and specificity = 97%) ( Kørner et al., 2006 ).

Quality of life (QUALIDEM)

The assessment of the quality of life was measured using the validated QUALIDEM instrument, which consists of a total of nine subscales (in a heterogeneous sample, as in this study). The higher the value of the subscale (whereby the scales can reach different scores from min. 12 points to max. 42 points), the higher the quality of life of the person with dementia in each dimension. The QUALIDEM questionnaire has good psychometric characteristics. In terms of reliability, a strong internal consistency was measured in numerous studies (Cronbach’s α > 0.7) ( Bouman et al., 2011 ; Dichter et al., 2011 ; Gräske et al., 2014 ). With regard to validity, studies showed good to very good scalability up to three subscales (Loevinger’s H = 0.31 ≤ H ≤ 0.65) ( Dichter et al., 2013 ).

Intervention

The main goal of all provided music interventions was to investigate their usage by PwD in nursing homes and to examine the related influence on BPSD over time. A total of six different types of music interventions (MT and TBMI) were offered to meet the individual preferences and likings of each study participant. These music interventions were interventions that were compatible with both the spatial, organizational, and staffing conditions of the nursing homes.

This type of active MT was performed once a week for 45 minutes by a credentialed, certified, and experienced (with the target group) music therapist. The planned group size of the MT group was five study participants. However, other nursing home residents occasionally participated in the sessions by random chance, so that the group size varied (max. 10 participants). The music was improvised, mainly played by the music therapist with a guitar or accordion. In addition, singing bowls and percussion instruments were sometimes used to support the experience of rhythm, which were played by some participants in the study.

Individual MT

The individual MT was conducted in the context of receptive MT. This music intervention was performed every two weeks (alternating weeks with group music with movements) for 30 minutes by a credentialed, certified, and experienced (with the target group) music therapist for only one study participant each. The music was played by the music therapist using a guitar.

Background music

This TBMI was played by caregivers daily during each meal (breakfast, lunch, 3:00 p.m. tea, and dinner) for all study participants for approx. 4 minutes via CD player. It was standardized and suitable music for the respective meals.

Group music with movements

This TBMI was performed every two weeks (alternating weeks with individual MT) for 60 minutes by a certified fitness trainer for physical activation. The planned group size was 10 study participants, which was not exceeded. The music was a prepared music playlist that was transmitted via TV. The music selection was based on a biographically relevant approach.

Music program in common room

This TBMI in the common room was turned on and off by caregivers and was made available to each study participant every day from 10:00 a.m. to 04:00 p.m. via TV and an external hard disk. Other nursing home residents also took advantage of this offer. On days when other MBI or MT were offered in the common room (e.g., group music with movements), the music program was turned off at this time. The following music program was played: karaoke (both with traditional continuous text and with text sung by an older person), pictures/videos accompanied by music, and provided instruments.

Individual radio

This TBMI was played automatically twice per day for a maximum of 30 minutes in the resident’s own room at an individual volume. The automatic playing time varied according to the needs of the study participants. All music songs were played at an appropriate volume for the PwD, and the playing speed was adjusted (slowing down). Further information on the interventions (e.g., theoretical reference) can be found in Supplementary Tables 2 and 3 .

Data Analysis

The data from the questionnaires were collected paper-based within the clinical study and afterward transformed into digital data using Microsoft Excel. The analysis for the evaluation of the questionnaires was carried out using the statistical program IBM SPSS Statistics 27 (IBM Corp, Armonk, New York).

In order to investigate the influence of high usage or low usage to timepoints T2 and T3, bivariate and multivariable analyses with the variable “Frequency of use on MT and TBMI” (collected at T3), a total sum of all these variables (e.g., group music therapy and karaoke) was calculated. Accordingly, low values reflected a high usage of MT and TBMI and high values reflected a low usage of MT and TBMI (“1” = “very much used,” “4” = “very less used,” “5” = “not used,” “6” = “don’t know”). Values 5 and 6 and missing values were excluded from the calculations. In order to carry out further calculations, this new variable was dichotomized to distinguish the sample between “residents with high usage” and “residents with low usage.” A median was calculated ( Mdn = 27, min = 9, and max = 45). To calculate the influence of MT and TBMI usage on agitation, apathy, and depression, nonparametric Mann–Whitney U -tests were performed on the change scores between T2 and T3. For the variable quality of life, independent samples t- test was used.

Correlations of acceptance and use of MT and TBMI in relation to gender were calculated using a univariate analysis of variance. For the variables age and Mini-Mental State Examination correlations according to Pearson were calculated.

A Friedman test was conducted to investigate the influence of MT and TBMI on agitation ( N = 24), apathy ( N = 24), and depression ( N = 23) on the raw scores at different timepoints ( k = 3). In the case of normal distribution (only with variable quality of life), a one-way Analysis of Variance with repeated measures ( p -values corrected according to Bonferroni) ( N = 11) was performed.

Participants

The total sample of PwD (see Table I ) included 30 persons ( n = 18; 60.0% female and 60.0% widowed) aged 52 to 97 years ( M = 81.4 years) from three different nursing homes. The average MMSE score was 8.5 points ( SD = 7.4 points), which corresponds to severe dementia. With regard to musical activities, the RP stated that 83.3% ( n = 25) of the interviewed PwD regularly listened to music, 16.7% ( n = 5) of the residents still handled this independently, while the majority ( n = 25; 83.3%) of PwD were dependent on support for it (e.g., to turn on a music player). Therefore, it seems plausible that 96.7% ( n = 29) did not play an instrument anymore. In addition, the residents preferred to listen to folk music and pop songs ( n = 26; 86.7%), followed by classical music and opera ( n = 10; 33.3%) as well as pop music/musicals ( n = 7; 23.3%) and rock ( n = 3; 10.0%), according to the RP. The number of PwDs interviewed decreased over the measurement timepoints (T1–T4). One of the reasons for this was the death of five PwD during the study (see Figure 1 ).

Sociodemographic Data of the PwD and RP

Note. PwD = people with dementia; RP, related person; SD, standard deviation. Multiple answers were possible for the item “favorite music genre.”

CONSORT diagram.

The sample of RP ( n = 9) included nurses ( n = 8) and an occupational therapist ( n = 1) (77.8% female) with an average age of 48.7 years. The majority of the RP ( n = 20; 90.0%) had daily or even several times a day contact to the residents.

Frequency of Use and Acceptance of MT and TBMI

As shown in Figure 2 , the frequency of use of MT and TBMI was surveyed on a 6-point Likert scale (“1” = very often and “6” = do not know ). Frequent use of group music with movements ( n = 19; 70.3%), group MT ( n = 18; 66.6%), and individual MT ( n = 15; 55.5%) was also reported by the caregivers. The frequency of use of the technically supported music interventions, for example, karaoke and biography-specific favorite music, was lower than the frequency of use of the personnel-guided music interventions (similar to the acceptance of the music interventions). According to the RP, the reasons for nonuse were mainly health problems of the residents ( n = 11; 42.3%), memory about the existence of the music interventions ( n = 9; 34.6%), tendency to retreat ( n = 3; 11.5%), and motor restlessness ( n = 1; 3.8%). More than half of the RPs felt the common music room with its alternating music program (e.g., karaoke, music accompanied by pictures, and musicals) as appropriately equipped for older people ( n = 16; 59.3%) and for PwD ( n = 17; 62.9%). In addition, the RPs reported that 63.0% ( n = 17) of the residents to have liked the choice of music interventions pretty much or very much. No significant correlation was found with regard to the frequency of use on MT and TBMI with gender ( F (1, 28) = 0,67, p = .42, partial η 2 = .02), age ( r = .29, p = .13), and MMSE ( r = .21, p = .29).

Frequency of use on music interventions.

As shown in Figure 3 , the frequency of acceptance of MT and TBMI was surveyed on a 6-point Likert scale (“1” = very good and “6” = do not know ). With regard to the acceptance of the PwD toward individual music interventions, group MT ( n = 22; 81.4% good or very good) was rated best, along with the group music with movements ( n = 21; 77.7% good or very good) and individual MT ( n = 19; 70.3% good or very good) (see Figure 7 ). No significant correlation was determined with regard to acceptance of MT and TBMI with gender ( F (1, 28) = 0,60, p = .45, partial η 2 = .02) and MMSE ( r = .26, p = .18). A significant correlation was found only with regard to age ( r = .40, p < .05).

Frequency of acceptance on music interventions.

Agitation and Apathy

Considering the influence of MT and TBMI on agitation at times T2 and T3, agitation was found to decrease more strongly among the residents with a high usage of MT and TBMI ( Mdn = −4.5, Q1 = −7.5, Q3 = −1.5) than among those with a low usage of MT and TBMI ( Mdn = 0.0, Q1 = −2.5, Q3 = 1.5; U = 41.00, p < .05).

Figure 4 shows a reduction of agitation at time T3 ( Mdn = 6.0 points, Q1 = 5.0, Q3 = 11.0) compared with T2 ( Mdn = 10.5 points, Q1 = 7.3, Q3 = 12.8). In addition, the median value of agitation after the intervention at time T4 increased slightly to 9.0 points ( Q1 = 6.0, Q3 = 11.0). The overall influence of time was significant (Friedman test: Chi square = 7.35, p < .05, n = 24).

Distribution of agitation scores over time.

The comparison between T2 and T3 shows that the apathetic behavioral symptoms of residents with a high usage of MT and TBMI ( Mdn = −6.0, Q1 = −9.0, Q3 = −2.5) decrease more than those with a low usage of MT and TBMI ( Mdn = 1.0, Q1 = −2.0, Q3 = 3.0; U = 36.50, p < .01).

Figure 5 shows the same tendencies for apathy scores. The median apathy score in T2 decreased from 13.0 points ( Q1 = 11.0, Q3 = 18.0) to 11.0 points ( Q1 = 5.0, Q3 = 14.8) in T3 and increased slightly to a total of 13.5 points ( Q1 = 8.0, Q3 = 19.8) at time T4. However, the overall influence of time was not significant (Friedman test: Chi square = .886, p = .64, n = 24).

Distribution of apathy scores over time.

No significant differences in depressive symptoms at times T2 and T3 in PwD with high usage of MT and TBMI ( Mdn = −8.0, Q1 = −11.5, Q3 = −0.5) compared with PwD with low usage of MT and TBMI ( Mdn = −2.0, Q1 = −4.0, Q3 = 0.5) were detected (U = 63.00, p = .20).

As shown in Figure 6 , at time T2 ( Mdn = 7.0 points, Q1 = 3.0, Q3 = 11.0) of the noncontrolled intervention study, depressive disorders were observed on median in PwD. At time T3 ( Mdn = 2.0 points, Q1 = 0.0, Q3 = 8.0), a decrease of the median value in depressive symptoms of the residents was observed, which increased slightly to a median depression score of 5.0 points ( Q1 = 2.0, Q3 = 8.0) in the follow-up phase in T4. However, there were no significant differences between these measurement points (Friedman test: Chi square = 4.57, p = .10, n = 23).

Distribution of depression scores over time.

Quality of life

Comparing the changes in quality of life in T2 and T3 between residents by means with a high usage of MT and TBMI ( M = 6.0, SD = 4.6) and those with a low usage of MT and TBMI ( M = 4.3, SD = 13.1), no significant differences were observed ( t (13) =. 21 , p = .84).

The results of the subscales of the quality of life measuring instrument (see Figure 7 ) were summarized as a total average score. The one-way ANOVA with repeated measures shows an improvement in quality of life with MT and TBMI. The quality of life of PwD increased on average from time T2 from 138.9 points ( SD = 23.4) to 141.4 points ( SD = 27.1) in T3. However, at time T4, it decreased again on average by 7.9 points ( M = 133.5, SD = 19.0). There was no statistically significant difference for all timepoints ( F (2,20) = 3.18, p = .06, partial η 2 = .24).

Average quality of life scores over time.

The purpose of this nonrandomized and noncontrolled 14-week pilot study was to assess the impact of frequency of use and acceptance of individual-based MT and TBMI in nursing homes on PwD. The focus was to consider (1) the relationship between use/acceptance of music interventions and sociodemographic data, (2) influence of high/low usage of music interventions on PwD’s BPSD, and (3) influence of music interventions on PwD’s BPSD over time.

Results Reflection

Descriptive results showed higher frequencies of use and acceptance of the music interventions delivered during personnel-guided MT and TBMI (such as individual MT, group MT, and group music with movements) compared with the music interventions that were only technology based and played without guidance. This result seems to indicate that actively guided and individual-based music interventions delivered by qualified personnel are better accepted by PwD than technique-based music interventions only. Furthermore, these results imply that the integration of individual-based music into the standard patient care of an inpatient nursing home setting can succeed despite the involvement of external staff (music therapists and fitness trainers) and the disadvantages that may be associated with this (e.g., lack of knowledge about the facility and residents and negative working atmosphere/unrest in the internal team).

In addition to song selection for individual-based and biographically relevant implementation of the music interventions, caregivers were also responsible to turn music on and off (except for the automatic individual radio). The results of nonuse of the different music interventions indicate that, despite multiple training courses, it appears that there were challenges in using technology. The music devices used were not adapted to the operability of the target population of PwD (e.g., to the requirements of progressive dementia)/caregivers (e.g., to the requirements for the level of technical knowledge) nor were they adapted for use within the nursing home setting. This issue was indicated by Ruggiano et al. (2019) in their study. Therefore, according to this study by Ruggiano et al., having providers of such technologies assist in the selection process to assess and meet the specific needs of each stakeholder and provide solutions to problems can be a solution. For example, instruction sessions, consultations, and monitorings with all those persons involved (including external music therapists) who are engaged in the implementation of the music interventions are indispensable in order to prevent technical anxieties, problems, and difficulties. In order to increase use and acceptance, providers of TBMI should always consider the individual functional, cognitive and emotional needs, and activities of users in the development, whether they are caregivers or PwD ( Langley et al., 2020 ). Therefore, in the future, MT and TBMI should ensure to use musical instruments, music devices, and music programs in a user-friendly, intuitive manner that focuses on the individual needs of persons with dementia ( Gerdner, 2019 ). For people (e.g., relatives) who assist PwD in the use of TBMI, continuous further training is necessary ( Hahna et al., 2012 ) to ensure that they have the skills to use the latest technology and to promote their own readiness and acceptance of technology.

However, although the relationship between use and age was not statistically demonstrated, significance was found between acceptance and age. As other studies have found ( Czaja et al., 2006 ; Venkatesh & Davis, 2000 ; Venkatesh et al., 2003 ), the results (age: M = 81.4 years; MMSE: M = 8.5 points) of this study also indicate that certain factors, such as age, have an impact on technology acceptance. However, future studies using a larger sample would need to investigate, for example, the strength of the association of age and cognitive status of PwD on the use and acceptance of technology and TBMI.

Furthermore, the results found that agitation and apathy decreased significantly more with high usage of MT and TBMI compared with low usage. Similar to numerous studies demonstrating improvement in BPSD with MT ( Lam et al., 2020 ), this study demonstrated a positive impact entirely of these observed outcomes. Although MT and TBMI were not considered separately in the context of high/low usage, there were no negative abnormalities among PwD that could be attributed to TBMI. In the future, further research and developments in TBMI will make it easier to integrate these technologies into nursing home settings. Furthermore, TBMI always enables individual-based ( Hebert et al., 2018 ; Huber et al., 2020 ; Thomas et al., 2017 ; Weise et al., 2020 ), autonomous, and time-independent access to music, even for those PwD who do not wish to or cannot participate in community offerings such as group MT. To have an exact view of the influence of high/low usage of MT and TBMI on BPSD, further studies are needed that consider both music interventions separately.

Methodological Reflection

The results showed that MT and TBMI exclusively had a significant effect on the observed outcome of agitation over time. In contrast to other studies, no significant effects were found in this study in relation to BPSD outcomes, such as apathy ( Tang et al., 2018 ), depression ( Biasutti & Mangiacotti, 2021 ), and quality of life ( Cho, 2018 ). One reason could be the selection of measurement instruments, for example, the NOSGER scale, which measures apathy and agitation with a few items. The study team had to pay attention to the length of the questionnaires and the duration of the interviews. Therefore, short questionnaires with fewer items per outcome were chosen. In subsequent studies, efforts should be made to ensure that meaningful, reputable, and valid measurement instruments are used for each outcome, such as the Agitated Behavior in Dementia Scale ( Logsdon et al., 1999 ), the Cohen-Mansfield Agitation Inventory ( Cohen-Mansfield et al., 1989 ), and the Pittsburgh Agitation Scale ( Rosen et al., 1994 ).

To obtain valid data, the study team decided to have the questionnaires filled out by other persons instead of the study participants themselves. This was due to the fact that to answer the questionnaires, certain information of the long-term memory needed to be retrieved (e.g., taste in music and abnormalities of the BPSD). One limiting effect is that it leads to certain discrepancies between the subjective perception of the caregivers and the actual feelings and mood of the PwD. There are also ways of dealing with these discrepancies and proxy bias in dementia research ( Lacey et al., 2015 ; Robertson et al., 2020 ). Future studies should consider interviewing PwD and caregivers. To obtain additional first-person information, it should be considered to track participation and attendance at music interventions. For example, objective observation through video analysis might give more insight into the individual and complex emotional processes and behavior change during MT and TBMI.

Overall, the implementations should be investigated not only by quantitative studies but also by qualitative studies considering all participants (e.g., caregivers) through observations (e.g., DCM) and evaluations in order to identify and validate quality identifying music interventions. Controlled studies with reference to biographically relevant and individualized MBI and TBMI should also be considered in order to compare efficiency with conventional pharmacological studies and studies on active and receptive MT. In addition, long-term effects and larger investigations should be examined in further studies as well as considering other settings, such as outpatient-cared PwD.

This study is a novel study to examine the influence involving MT and TBMI on BPSD in dementia. Although this study supports previous research, there are a number of limitations that highlight further recommendations for future research.

When interpreting the results, it should be noted that in this sample PwD were heterogeneous with regard to the progression of the disease, for which a self-assessment of the questions was no longer possible. With regard to this, no individual technical acceptance of the residents in the use of MT and TBMI was measured. Based on the exclusion criteria, the transferability of the results for severe cases of dementia and nonverbal patients seems unclear although MT and music intervention often are highly valued. In addition, no conclusions can be drawn either about the influence of individual music interventions, for example, on the quality of life, or about the influence of TBMI in comparison to conventional methods of MT (group MT). Furthermore, the duration of the eight-week intervention phase of this pilot study seems not sufficient enough to detect long-term effects in PwD with respect to the parameters studied.

The results of this pilot study provide initial evidence that the use and acceptance of personnel-guided music interventions (MT, group music with movements) in nursing homes of PwD are higher than for TBMI (karaoke, pictures/videos with music, and individual radio). In addition, there is evidence that both music interventions decreased agitation and apathy, with greater changes observed in the group of high usage on MT and TBMI. This is the first pilot study that combined both MT and TBMI with each other for PwD in several nursing homes and examined the impact of use and acceptance on different behavioral symptoms. Although changes were demonstrated, further research with larger samples and separate analysis consideration of MT and TBMI is needed to examine the effectiveness of these different music interventions. Nevertheless, the use of TBMI offers a good supplement as a psychosocial intervention for PwD in nursing homes. A major advantage of TBMI is that it can be used in a personal, time-independent, and non-binding manner, and individual music preferences can be accommodated, even when nursing home staff or a music therapist is not available.

The author know none declared conflicts of interest associated with this publication.

The responsibility for the contents of this publication lies with the authors. The aim of the wider project was to develop a musical system for people with dementia. This was a joint project that ended in September 2018.

This study was supported by the German Federal Ministry of Education and Research (BMBF) under grant number 16SV7371. This research received a specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

We know of none declared conflicts of interest associated with this publication.

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• Research Article
• Open access
• Published: 14 February 2017

Nutrition and dementia care: developing an evidence-based model for nutritional care in nursing homes

• Jane L. Murphy 1 ,
• Joanne Holmes 1 &
• Cindy Brooks 1  

BMC Geriatrics volume  17 , Article number:  55 ( 2017 ) Cite this article

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There is a growing volume of research to offer improvements in nutritional care for people with dementia living in nursing homes. Whilst a number of interventions have been identified to support food and drink intake, there has been no systematic research to understand the factors for improving nutritional care from the perspectives of all those delivering care in nursing homes. The aim of this study was to develop a research informed model for understanding the complex nutritional problems associated with eating and drinking for people with dementia.

We conducted nine focus groups and five semi-structured interviews with those involved or who have a level of responsibility for providing food and drink and nutritional care in nursing homes (nurses, care workers, catering assistants, dietitians, speech and language therapists) and family carers. The resulting conceptual model was developed by eliciting care-related processes, thus supporting credibility from the perspective of the end-users.

The seven identified domain areas were person-centred nutritional care (the overarching theme); availability of food and drink; tools, resources and environment; relationship to others when eating and drinking; participation in activities; consistency of care and provision of information.

Conclusions

This collaboratively developed, person-centred model can support the design of new education and training tools and be readily translated into existing programmes. Further research is needed to evaluate whether these evidence-informed approaches have been implemented successfully and adopted into practice and policy contexts and can demonstrate effectiveness for people living with dementia.

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The growing prevalence of dementia worldwide in our aging society has been widely reported with estimates of about 65 million people having dementia by 2030, rising further to 113 million by 2015 [ 1 , 2 ]. Complex nutritional problems arise in dementia over the course of the disease with the progressive decline in cognitive and behavioural functions, finally losing the ability to independently function physically [ 3 ]. Thus due to mental and cognitive impairments, physical disabilities and psychological factors (depression and agitation), people living with dementia have difficulties associated with eating and drinking. These include partial or complete help and support required to eat as skills may be lost (access food to mouth), decreased sense of thirst and the ability to chew. People with dementia may experience increased appetite, rapid eating and repeatedly asking for food or have compulsive eating needs associated with some types of dementia. Dysphagia may develop and is reported in 13–57% of people with dementia [ 4 ]. Other mealtime behavioural challenges that affect intake include wandering, pacing, refusal behaviour, apathy or indifference. In addition to the dementia-related problems, people with dementia may also be affected by age-related comorbidities and taken together these can exacerbate reductions in intake and undernutrition [ 5 – 7 ].

In the UK the majority of people with dementia live in the community, and this care is provided by formal or informal care givers (family carer or relative) [ 6 ]. Nutrition-related complications in dementia can contribute to stress and caregiver burden. In addition this burden can develop into a cycle that can increase the risk of poor eating behaviour [ 8 ] and weight loss [ 9 , 10 ]. Nutritional interventions that enable improvements in food and drink intake offer an opportunity to interrupt the potential risk of weight loss, undernutrition and dehydration, the consequent decline in cognition as well as alleviating the associated care burden.

A number of recently published articles have reviewed the current research on interventions aiming to improve food and drink in people with dementia including those living in long term residential care [ 11 – 14 ]. Interventions that modify food and drink include—oral nutritional supplements, assistance with eating and drinking, managing swallowing problems as well as those that offer environment-related interventions during mealtimes including eating location and arrangement, ambient sounds and music, aroma, temperature and lighting and food presentation. However there is no definitive evidence on the effectiveness and sustainability of such interventions to improve the nutritional health and wellbeing of people living with dementia in long term care settings or the potential to reduce cognitive decline in dementia [ 11 – 13 ]. Liu et al. [ 15 ] highlight concerns that many training programmes and mealtime assistance interventions in original studies are implemented by trained research assistants or researchers instead of front-line nursing care staff. This could contribute to the lack of effectiveness observed in many studies. Although there is a growing body of research for strategies to improve person-centred food and drink intake in people living with dementia, many existing approaches have not been tested in real-world settings with all those responsible for the delivery of care [ 16 ]. Therefore the aim of this study was to provide a research informed model of day-to-day application gathered from multiple perspectives to inform and upskill those responsible for delivering food and nutrition for people to continue living with dementia in care homes. In this way it will be possible to comprehensively shape which aspects are primary targets for further interventions.

This qualitative study obtained rich contextual data using focus groups and semi-structured interviews. Participants were purposefully sampled from care homes and healthcare services in the community and carer groups from a local database of care providers specialising in dementia care. In total 27 care organisations were identified across rural and urban locations and care staff invited to participate in the study. Participants represented all those involved in the care of people living with dementia including care staff (health care assistants, nurses, care home and hospitality manager, catering staff) family carers, dietitians and speech and language therapists.

Data collection

The interview guide was developed by reviewing other qualitative research exploring eating and drinking in people living with dementia in community settings to inform questions that would elicit the most informative responses. This was then discussed with the research team and key stakeholders on the project steering group (comprising a commissioner, lay user, workforce development representative, councillor representing social care) to determine what questions would most thoroughly explore the participants’ experiences.

Topics and questions included the following:

Tell me about your experiences of providing meals and drinks to residents/family member

What do you enjoy about providing meals and drinks to residents/ family member?

What do you find difficult about providing meals and drinks to residents/ family member?

What would help you in providing meals and drinks to residents/family member?

How do you think these areas could be improved?

What issues do residents with dementia confront when eating and drinking?

What happens when residents don’t like meals or drinks? How can this be improved?

How to make food and drink more familiar to residents/ family member? Are there associations with their past? How is it presented? How it is delivered: plate, bowl and cutlery?

How do residents’ cultural and religious sensitivity affect how they see different foods and drinks?

Focus groups were held in a neutral venue led by the research assistant (CB) for this project with background experience of qualitative methods and prior research experience on a project involving people and staff in healthcare and community settings. Two researchers (CB and either JH or JM) were present in each group or semi-structured interview with the research assistant (CB) leading the discussion each time. At each focus group and interview she was supported by one other researcher to moderate and for quality control purposes.

All focus groups and interviews were recorded and transcribed verbatim to ensure accuracy but anecdotes or jokes were not taken into account. Only comments relevant to the research question were transcribed.

Ethical approval for the study was obtained from Bournemouth University Research Ethics Committee. Informed written and verbal consent was provided throughout the study. Participants were not obliged to participate and had the opportunity to ask questions before the sessions took place.

Data analysis

The data collection and analysis was an iterative process, using Braun and Clarke’s [ 17 ] six-stage method of thematic analysis, and ultimately leading to data saturation. In the first stage, the analysis started with familiarization with data, through reading and rereading the transcripts. This was followed by the generation of coding nodes and features of the data were coded across all the transcriptions. In stage three, initial codes were grouped together which allowed the explanations to be identified. Themes were cross-checked by the research team for agreement to minimise bias. Overarching themes that grouped the initial codes were developed to create a framework for writing up the analysis in stage five. Stage six involved writing up the analysis and selecting extracts to illustrate themes.

Names of participants were replaced with codes to assure anonymity. It was noted if a participant agreed to the comment of another participant. To improve the rigour of the analyses and the trust-worthiness, we introduced a number of strategies including the coding and ordering process of excerpts in the transcripts. Triangulation of researchers was performed: all transcripts were first analysed by two researchers independently (CB and JH).

The coding and the interpretation of the codes were then discussed by these two researchers to deepen their analyses and to reach consensus about what were main themes. In addition, the other author (JM) read and analysed at least one transcript. All authors commented on interim and final analyses of the data. The authors have different educational backgrounds (nutrition, food science, sociology).

Participants

Nine focus groups and five semi-structured interviews were conducted with 50 participants. Family carers ( n =  8) represented people living with dementia in long term care settings. Speech and language therapists ( n =  9) and dietitians ( n =  3) were all employed by the National Health Service. There were 30 care staff recruited from 20 care home organisations. Of these 26 participants (87%) worked in care home facilities that had more than 20 residents. The majority of the participants were female. Details of the participants are shown in Table  1 .

Overall seven themes emerged from the data (Table  2 ) that were inter-related but were not mutually exclusive.

The overarching theme of ‘person-centred nutritional care’ identified the need to prioritise the nutrition and hydration needs and preferences of people living with dementia. The second theme related to the importance that food and drink should be readily available, entitled ‘ availability of food and drinks’. The third theme, ‘ tools, resources and environment’ focused on the range of tools, resources and influential environmental factors needed to support the delivery of food and hydration. The fourth theme, ‘ relationship to others when eating and drinking’ was concerned with how the presence of others, including care staff, family members and other residents and the setting (own room, dining room and other communal area) affected the person’s mealtime experience. The fifth theme, ‘ participation in activities’ captured the ways in which activities could be used to engage residents and stimulate the appetite. The sixth theme, ‘ consistency of care’ recognised the need for prioritisation and consistency in the provision of nutritional care for people living with dementia in care homes but also across health and social care environments (at home, across care sectors – care homes, in hospital, day centres). This led on to the final theme, ‘ provision of information’, that embraced the need for better information, education, training and support to guide nutritional care for both formal and informal carers.

Each theme is described in turn below and illustrated through verbatim representative extracts for either focus group or interview. The extracts are labelled according to the type of participant: care staff (CS), dietitian (DT), family carer (FC), speech and language therapist (SLT), director of nursing (DN), hospitality manager (HM).

Person-centred nutritional care

Participants reported that recognition of the stage of dementia was essential to provide appropriate support to meet nutritional needs and preferences. As dementia progresses recognition of eating utensils, food and dining environment starts to diminish and there is a reduced understanding of mealtimes. Participants reported that as dementia develops it became difficult to persuade people to eat:

‘There’s the early dementia where those markers [meeting somebody's full nutrition and hydration requirements] are achievable and there’s a point at which those markers just aren't. And I think that’s really hard for the care staff and the families, but I’ve got to make him eat, I’ve got to, he’s got to eat and there’s this kind of force-feeding. That’s where I think there’s a gap in the literature we give people.’ (focus group 9, SLT 2)

Participants reported that due to changes in the provision of care, inadequate staffing levels were increasingly problematic. In the past, generally people living with dementia may have come into the care home at an earlier stage if not possible to be cared for in the community at home. They are coming into a care home at a later stage of their dementia journey when their nutrition and hydration preferences and needs may have significantly changed requiring more support, patience and time from care staff:

‘across the board dementia care is way under-staffed because we’re seeing such higher dependency of people now coming in. People with dementia who traditionally maybe would have come into care homes much earlier are now being cared for at home in the community … it’s really difficult because you might have one member of staff that’s trying to support four people to dine well and it’s quite impossible…’ (focus group 7, CS 2)

Participants acknowledged the variability in psychosocial factors including a person’s mood, whether their preferred carer had come that day and the time of day could impact upon a person’s responsiveness to eating. If those living with dementia were anxious or worried about something then this would affect their hunger patterns and willingness to eat. The motives that underpin these responses required more understanding to settle residents to be encouraged to eat and drink. This might include reassurance or changing the environment in which they were eating:

‘…and it could be psychological couldn't it, reasoning, people give for dementia if they’re particularly anxious that day, if something’s frightened them or worried them, they may not know what that is … some of us will when we’re worried, eat and others don’t want to eat, and that’s not uncommon, we see that a lot.’ (focus group 3, CS 3)

It was recognised that the person’s responsiveness was related to whether he/she was clean and in a comfortable position to support their dignity:

‘Y’know the resident may no longer be able to ensure they maintain their dignity, but y’know the staff do that. They make sure their hands are clean before they take their meal and that their hands and their face and their clothing is clean … A lot of these residents have very upstanding professions, livelihoods, y’know characters, experiences and it doesn’t mean because they can no longer do it you just ignore it now y’know. It’s very much instilled the dignity side of things.’ (interview 2, DN 1)

Knowing a person’s life history including their relations to family and friends, their former occupation, whether they have lived abroad, which languages they spoke, whether they have recently lived alone or with other(s) were identified as integral to understanding and supporting a person’s nutritional needs and preferences:

‘we had a lady that came into this home and she’d been diagnosed with dementia… her main meal would be put in front of her and the first thing she would do is actually tip one of the drinks she had beside her, whether it be squash or wine or whatever on to her meal … but we then chatted to the family and we actually discovered this lady had been a horticulturalist in her working time, and the plates that we used at that time had a rim of flowers … she wasn’t seeing the meal … she was seeing the flowers and she was watering the flowers. And the minute we changed our crockery, we tried it initially with her on to a plain white plate, it stopped.’ (focus group 5, CS 3)

Importantly, food was recognised as occupying one of the last functions that people living with dementia may influence. The following example reveals food can occupy a way of exercising agency and expressing decision making:

‘and it’s like food is the last thing many people have any sort of control over, it’s almost like the anorexic, bulimia sort of cycle of I can’t control where I am or what I do or what people are making me do but I can mmm decide what not to eat or not eat lots.’ (focus group 3, CS 2)

Participants acknowledged how a range of health conditions, such as infection, sensory loss, mobility issues, dental problems or ill-fitting dentures and the side effects of medication should be carefully monitored by care staff. Close observation and monitoring of these factors is especially important as dementia progresses and people may not be able to communicate pain, discomfort or anxiety when eating and drinking:

‘the important things with dementia is that they can’t tell you that they’re not eating. You need to look for their physical things first. They might just be unwell or they might have a sore throat… to be careful of their dental hygiene as well. Ill-fitting dentures, things like that really have to sort of eliminate those things first.’ (focus group 4, CS 1)

Generational factors were recognised as important in influencing a person’s nutritional and hydration preferences. Food and drink preferences earlier in their life may become more prominent. For instance participants indicated that the age range within one home ranged between 60 and 104 years. They had introduced a range of food to accommodate changing generational tastes, for example moussakas, cannelloni, sweet and sour chicken.

Religious and cultural background can also influence nutritional and hydration preferences. Although as a result of dementia, a person may express an appetite for food types which are prohibited within their religion. This might create discordance between the care staff wishing to respect the resident and their family’s religious dietary practices but also responding to the resident’s appetite and desire for certain food types:

‘we’ve always respected and taken on board any faith/cultural background…I think we’re still somewhat sheltered at the minute, maybe the next generation we’ll start to see that mixture…a lot of our older gentlemen have been abroad in their younger years and you can see where perhaps y’know contrary to what their wife might think they might actually love a spicy food.’ (interview 2, DN 1)

Participants reported how there was a need for better nutritional training and education (see later) but particularly for chefs around food fortification to improve energy intake and the presentation of modified meals such as purees including the use of food moulds. The appropriateness of which foods to puree to meet person needs eg pureeing of meal components to maximise retention of colour and aroma were also identified:

‘For our chef…the minute he made the first batch he was so happy that he could actually provide somebody who needed the consistency of diet, something that looked…dignified and we’ve never looked back…Y’know you’re not talking of the average older population, you’re talking about the most vulnerable…highest dependent need and you’ve got to take that on board.’ (interview 2, DN 1)

The following six interconnected themes are discussed and in relation to person-centred nutritional care where relevant.

Availability of food and drinks

Participants reported that food and drink should be readily available, easily accessible and offered to residents throughout the day and night. Whilst many care homes provided menus, participants stressed that menus should be used flexibly in accordance to whether they are fulfilling nutrition and hydration needs and preferences and ensuring cultural diversity. Where these needs were not supported by the menu, participants emphasised how other food and drink choices should always be available. In particular, when people with dementia elicited signs of hunger, food and drink should be offered with encouragement, patience and calm.

‘If they say we need some eggs and bacon because… the resident wants this at this time of the morning…the staff are good because we explain… but they’ve got an appreciation of what that person likes in the day or what a typical behaviours are of the day and they can take that on board on nights…’ (interview 2, DN 1)

Participants reported changes in people’s tastes as dementia advances, including a preference for stronger flavours, such as sweet, salty, spicy and sour foods. These can be accommodated by adding spices and seasoning to increase the strength of flavours:

‘..and if you educate them, if you actually talk them through then obviously advise people to actually have condiments racks in the room that they will add the salt and pepper and paprika and herbs actually on the meal as it comes in but it’s not something that the homes feel particularly confident, I don’t think in doing off their own back I don’t think they know that bit.’ (focus group 9, SLT 3)

The time of day was also identified as affecting a person’s appetite, with participants identifying the need to engage people when most alert, interested and awake:

‘My experience is … breakfast and the lunches that’s mainly when they’re interested, then after lunchtime it gets harder and harder for people to, to encourage people to eat and most of our residents would find it difficult to choose.’ (focus group 2, CS 2)

In comparison to formalised mealtimes which may place more expectation upon residents to eat, participants reported how the ready availability of a variety of meal options including frequent offering of smaller or ‘mini-meals’, grazing food and snacks in different settings gave people flexibility to eat when hungry or motivated to:

‘Finger food, definitely. As the dementia progresses we tend to see that massively increases because they want to retain as much independence as possible.’ (focus group 2, CS 2)

Participants stressed the importance of paying careful attention to stimulating the senses including colourful food, attractive presentation and use of aromas:

‘they know it’s fish and chips because of the smell of fish and chips, I mean the aroma…and it’s also like the aroma makes you hungry so if a client doesn’t want to eat and you say well I’ve got a nice bowl of carrot soup…you can smell the beautiful spices or the smell of carrot.’ (focus group 5, CS 3)

Participants emphasised the importance for accounting for changes in a person’s appetite and ability to swallow.

‘..and when we started looking…it was often misuse with dentures and other things rather than actually a problem of swallowing… we were in a situation where even when we got the dentures and everything fixed that person had not had solid food for so long… we did have to get a SALT (speech and language therapist) referral done because they couldn’t swallow, everything had changed here and they literally did struggle. (focus group 1, CS 1)

In addition professional support and advice from dietitians and diabetes nurse specialists about ways to modify existing foods to reduce the sugar content for people living with dementia and diabetes was reported:

‘we don’t have any diabetic products in our kitchens at all. We advocate that if someone is, has a normal type 2 diabetic then they have little bits, maybe, we might limit the amount of sugar, but we don’t start dishing out diabetic jam, diabetic pudding, low fat cake… it’s all of the same, just maybe a little less of it, and again that’s down to encouraging them.’ (interview 3, HM 1)

Oral nutritional supplements were reported by participants as a way of boosting nutritional intake but there had been a notable reduction in these being prescribed to residents. It was noted smoothies and milkshakes were used to replace these and enhance energy intake:

‘we’ve made a significant reduction in the amount of supplements that people have, partly that’s been driven by the GPs not being so willing to prescribe it because it’s a cost,….. they’ve been having with more smoothies and shakes and milkshakes which again because they’re sweet the residents tend to really enjoy.’ (interview 3, HM 1)

Due to the loss of thirst sensation, participants identified how hot and cold drinks should be readily available to residents in a variety of settings day and night. Drinks should be offered irrespective of whether residents had recently had a drink.

‘we’ve got one lady whose out and about all day. She walks around and however she prefers tea and coffee, she’s not much of a cold drink girl, so we provide more tea and coffee to her y’know. It’s about what they want… and then carers just go in and encourage fluid intake throughout the day.’ (focus group 4, CS 1)

Participants reported a variety of options for increasing residents’ fluid intake including ice lollies, jellies, sundaes, cool drink and water machines, smoothies, mini cartons, juice fruit, melons, oranges, cucumbers, spring onion, salad and fruit bowls. As the following quote illustrates these options were thought to be especially important in warmer temperatures:

‘..but some days you have orange juice, blackcurrant juice, different juices and it’s…somebody just gets fed up with every day the same food or the same drinks.’ (interview 1, CS 1)

The importance of encouragement, prompting and patience when offering a drink was identified by this family carer:

‘If you ask him if he wants a cup of tea he will have one but unless somebody’s going to keep asking him every half an hour do you want a cup of tea, I doubt if he’d get one.’ (interview 4, FC 1)

Tools, resources and environment

The use of the Malnutrition Universal Screening Tool ('MUST') [ 18 ] was identified as a way of identifying whether residents were at risk of malnutrition:

‘…we kind of document that into a care plan and ‘cos we’ve got nutritional care plans and we use the MUST tool and I’ve got a carer who weighs people every month, but if they lose weight then we put them on a special chart and then we weigh them more often and so.’ (focus group 3, CS 4)

Using the colour codes of red, amber and green to alert kitchen staff and make all other care staff aware of those at risk of undernutrition was highlighted:

‘it’s a colour-coded system… the kitchen staff know that anybody with a red coloured code is, they need to keep a real close eye on those. Amber is yeh OK, and green are low. We just use that as a visual tool.’ (focus group 7, CS 4)

A range of tools such as plate guards, modified cutlery and beakers can be particularly helpful in supporting residents nutritional and hydration needs. As dementia progresses, sometimes having less tools help the person to focus on eating and drinking more easily:

‘Finger food, definitely. As the dementia progresses we tend to see that massively increases because they want to retain as much independence as possible, they tend to prefer food they can access easily so soups they’ll suddenly stop eating, but yeh if you pop like a really nice display of finger food in front they’ll all quite happily sit there and eat those.’ (focus group 7, CS 2)

Visual aids such as picture cards and flashing screens could be useful to depict meals, these were recognised as unsuitable especially as dementia advanced. Due to memory loss, cognitive changes and sensory deterioration associated with dementia, identification of food through photographs became more difficult with consequent trouble remembering what had been shown.

A recurrent finding was the disadvantage of using menus as memory loss associated with dementia leads to the inability to recall selection of meals. Rather than visual aids, a number of participants emphasised how presenting residents with ready plated meals on a tray at meal times and patiently offering alternatives if appropriate, was essential to addressing the memory, cognitive and sensory issues associated with dementia:

‘I don’t see that there is any better yet to me to show me than you showing me two plates of food and saying [name of interviewer] would you like this one or this one? This one’s the lamb and this one’s the chicken …Now if you, depending on the level of dementia and type of dementia you might take quite a long time to choose, it might take you several minutes, you might still when [name of resident] dinner turns up decide you want that one… I think choice has got to be on the plate, in front of you, see it and smell it, have a feel if you want, have a poke of it, but not pictures. Definitely not.’ (interview 3, HM 1)

Contrasting colours of crockery, enabled identification of food items but they should represent regular household utensils to increase the familiarity to the resident:

‘we use the red sensation that actually looked like real crockery and you have to go up to it and pick it up to notice that it’s not, it’s got like a fleck through it black and silvery fleck with a sheen over the top so it looks like porcelain.’ (focus group 3, CS 2)

With respect to utensils for serving drinks, participants acknowledged that whilst utensils should be adapted and able to support the needs of the person they should look as much like everyday household utensils to appear familiar and support a person’s dignity:

‘Some people couldn’t pick up that mug so it’s about kind of adapting so we’ve bought plastic ones with two handles, we’ve bought camping mugs because they’re lighter but still resemble a mug. It’s about normalising everyday utensils…’ (focus group 4, CS 2)

A range of environmental factors which could be used to support and engage the person during mealtimes were described. These included setting tables and the dining room in different ways for different meals. For example, providing tablecloths with flowers at lunchtime and using linen and napkins. Other environmental aspects included the creation of a relaxed atmosphere by using soothing background music, having sufficient space between tables, a comfortable temperature and the use of lighting and colours to evoke different atmospheres:

‘it’s far more about creating the right atmosphere y’know, all the basics, the lighting, the way the table is set up, background music, having the right implements, the food itself, I think all of these things are what’s creating a relaxed atmosphere.’ (interview 3, HM 1)

Relationship to others when eating and drinking

Relationships needed to be assessed to suit the person with dementia. This aspect should be monitored and adapted according to the stage of dementia, mood, and whether the person with dementia prefers to eat and drink on their own and/or with others:

‘ It depends what stage of the dementia that they’re at because they need quite a lot of support and they need to be told to swallow so yes they need, if someone sits with them they’re more likely to have a meal than if someone, than if they’re just left to it.’ (focus group 6, SLT 5)

This theme is explored further to show the relationship with family members, care staff and other residents.

Relationship to family members

Responses were not consistent whether the presence of family member(s) (family carer/other relative/friend) sitting with the person encourages or inhibits the mealtime experience. A range of influential factors were identified including whether a person eats alone or with the family member, the stage of dementia and whether the family member is eating or drinking. Positive aspects of eating with a family member include familiarity, evoking past mealtime experiences and the benefits of encouragement to prompt eating and drinking. Negative aspects included placing unintentional pressure upon a person to eat, especially if a family member is not eating with the person.

‘some relatives are fantastic, amazing, but some have a limited understanding of dementia and how that can affect taste and appetite … and we try and explain to them things have changed, their needs and their tastes and y’know their abilities are changing‘ (focus group 7, CS 2)

Relationship to care staff

Staff eating with residents may help to afford trust especially if a person may have built up fears around eating and/or drinking. This practice can enable ‘copy-cat’ behaviours through the person imitating staff. On the other hand participants reported the potential for personality incompatibilities.

‘each carer can bring a different person out of themselves, I think personality-wise ‘cos it’s how they relate, how they engage with them definitely’ (focus group 5, CS 4)

Relationship to other residents

The relationship between residents was identified as contingent to a person’s stage of dementia, personality compatibility and whether they are used to eating on their own or with others:

‘the personalities on the table can have a major effect so you might have somebody who can’t abide noise or is quite noise sensitive, so if somebody’s particularly noisy if you sat them with that person it would probably result in them leaving the table so you’ve got to have a knowledge of your residents as you seat them.’ (focus group 7, CS 2)

Participation in activities

A range of approaches through activities were described to engage residents and stimulate appetite. The use of aromas within the care home was acknowledged as an important route in building up anticipation of the meal and stimulating the senses. These included aromas of cooked breakfast and baking, buying artificial aromas such as coffee, cherry almond bake and fresh bread and the use of different aromas to signify different days, such as roast lamb on a Sunday morning. These aromas were identified to evoke past memories:

‘It’s amazing and just the smell of a cooked breakfast will start people talking about the cooked breakfast they remember they had after D-Day and you’ll get these amazing conversations y’know that come from just the aromas.’ (focus group 3, CS 3)

Interest in eating and drinking could be stimulated through involvement in activities that involved food (gardening, baking, going shopping, preparing meals, cake decorating). These activities could be tailored to the person’s stage of dementia, life history and past occupation.

‘it’s about stimulation, engagement, occupation so it can be things like y’know food preparation … it’s more about dexterity, it’s more about involvement, inclusion … engaging and doing something so they might be icing cakes … We look at our residents and we see what makes them tick and what they like to do and what we do [is] that with them. So some things can be one-to-one, some things can be group activities and it’s always up for changing.’ (interview 2, DN 1)

Themed days’ in the care home offered important opportunities to promote eating and drinking. These days included cultural awareness days involving a number of culturally related activities, ‘taster days’, celebratory events and occasions such as Christmas, birthdays in addition to regular events (cinema events with snacks, afternoon teas, ice cream days):

‘so we had a French-themed day one day and the chef came up with a beautiful variety of foods and one resident was eating and because the activity staff had put a beret and some onions on completely unprovoked, un y’know un-thought of, this resident started talking very fluently in French. … how important it is to capture all of the information about them because second-hand, third-hand guestimates from others with every best intention and will in the world will not extract the essence of that person.’ (interview 2, DN 1)

Consistency of care

The importance of consistency in the provision and prioritisation of nutrition and hydration care for people living with dementia was widely recognised, supported by training, information and support. Better means of communication across the ‘circle of support’ (healthcare professionals -speech and language therapists, registered dietitians, GPs, nurses, care home staff, family carers, formal carers and people living with dementia) was integral to providing consistent care.

‘It needs to be spread over everything and not just from when [people] come to a care home. It needs to be in the day centres and in the homes, that’s the major problem.’ (focus group 3, CS 2)

Various strategies were proposed to support improvement of communication with participants emphasising how these should be initiated in the early stages of dementia, to ensure that their needs and preferences were being adequately met as their dementia advanced. These strategies included recording and sharing key information, (including life history, nutritional preferences, occupation), the introduction of multidisciplinary meetings, access to a Clinical Nurse Specialist or a Dementia Specialist Nurse to guide and navigate the person living with dementia to relevant services and resources and involvement of the family carer where appropriate.

This healthcare professional reported how an electronic patient record system between Dietitians and Speech and Language Therapists (requiring patient consent to share information), had improved communication between both parties.

’we have a new…electronic patient record system that both ourselves and speech and language therapy use …so as long as there has been some sort of consent from the patient to share their record then we can see what speech and language therapists have said and they can see what we have said.’ (focus group 8, DT 2)

Although sharing of information had become more difficult due to issues of confidentiality. As this example highlights:

‘but then that becomes an issue of confidentiality and consent and all the rest of it doesn’t it … do you remember that when we used to put communication plans above the bed, and oh no you can’t do that, you can’t … What about with your family member who took this journey?’ (focus group 9, SLT 2)

Temporary agency care workers and high turnover of staff made it difficult to follow-up or check information received leading to inconsistencies in care:

‘…and for the carers themselves they’re not sure how to approach that individual person to support them or think how they should be supported could be different to what happened on the previous day’ (focus group 8, DT 3)

The need for skilled dementia champions were identified to ensure that a person’s nutritional and hydration needs are being properly fulfilled and to prevent weight loss:

‘food…just being left in front of them and yet this person doesn’t know that you’ve got to lift the lid off to get to the food. Y’know they shouldn’t be drinking from like y’know a cup, like in their care plan they need to be drinking from a lidded beaker and y’know all these things they know that on some days when they’re having a good days, but they’re not having good days ‘cos they’re in hospital…on a bad day they need full assistance to dine, and that’s just not happening.’ (focus group 7, CS 2)

Participants stressed the importance of care staff communicating, encouraging and interacting with residents to build up residents anticipation of a meal. For example, the chef coming to have a conversation with residents to explain what meals are being served, using language that is appropriate for the resident. Patience and giving time to residents to understand and make choices were also identified as essential to helping residents feel comfortable and at ease:

‘Sometimes I find when our chef comes out and he’s obviously got all his chef uniform on it’s quite reminiscent of that, there’s a lot of sit up and oh this is just going to be just lovely and [he] comes back round and has a chat and I think it kind of puts them in a place oh, maybe we are in a restaurant find of thing…‘ (focus group 7, CS 6)

Provision of information

Participants identified a need for trusted evidence based information, education and training about the provision of nutrition and hydration. Issues were associated with the volume of information available on the internet, inconsistent and conflicting advice and not knowing where to look. Participants emphasised a need for information to be in an accessible format to suit the learning style as well as resources to signpost and support relatives and family carers.

‘Yes I had to just learn by trial and error…It would have been nice to have had some knowledge. Y’know whether the tastes buds disappear… ‘ (interview 4, FC 1)

This evidence base should recognise changes in taste and swallowing which take place as a person’s dementia advances, the positioning of a person at mealtimes and associated issues of safeguarding:

‘… there’s a balance…and what are the best interests, is it y’know keeping them safe no matter what or is it actually acknowledging that they should actually have some enjoyment and pleasure from their food as well in the later stages of their life.’ (focus group 6, SLT 4)

As well as recognising the latest dietary guidelines regarding the importance of texture, taste and nutritional guidance:

‘And I think also y’know we’ve had experience recently of nursing homes, training staff supposedly in … dysphagia and dysphagia management […] and by people working in the home who haven’t necessarily got the competency to do so and it’s kind of like tick in the box…whereas actually to what competency level and who’s been monitoring that’.. (focus group 6, SLT 3)

Importantly it was emphasised that any training and education provided needs to be monitored to determine if and how it is being implemented, to ensure the best quality care.

Model to inform strategies for the provision of good nutritional care in dementia

The experiences shared by the participants enabled the key themes to be constructed in the form of a model of good nutritional care (Fig.  1 ). At the centre of the model is the overarching theme to prioritise person-centred nutritional care. The determinants of person-centred nutritional care are influenced by the stage of dementia (and presence of other co-morbidities), psychosocial, cultural and generational factors.

Model for the provision of good nutritional care in dementia

The present study was undertaken to develop a model for understanding the provision of good nutritional care for people living with dementia in nursing homes. Our approach differs from that of previous studies that have explored eating and drinking from either the perspective of the formal or informal care giver [ 19 , 20 ]. Specifically we developed this model empirically by engaging with stakeholders from multiple perspectives to identify care aspects and processes that could lead to improvements in the delivery of nutritional care in the real world.

Person-centred nutritional care was an overarching aspect of delivering nutritional care in dementia. The importance of ‘person-centred residential dementia care’ has been increasingly recognised over the last 20 years since the publication of Kitwood’s Seminal work, Dementia Reconsidered in 1997 [ 21 , 22 ]. More specifically, there is recent literature showing the importance of mealtimes for families living with dementia highlighting strategies to promote meaningful mealtimes for family and how to stay socially engaged and continue mealtime routines and activities as dementia progresses [ 20 ]. Yet there would appear to be a lack of understanding about the role of eating and drinking and the meaning of the mealtime experiences of people living with dementia in the context of person-centred care. Thus the findings from the present study have illuminated a number of factors that directly contribute to person-centred care for nutrition in people with dementia that could be readily translated into existing programmes for providers of care.

The availability of food and drinks refers to the need for regular main meals and snacks. It recognises that energy needs may not be satisfied adequately through conventional food intake patterns and adaptations need to be made in response to differences in wandering behaviours, sleep patterns and physical activity. The present study offers a broader view of the traditional focus of the ‘meal experience’ in dementia with reference to three meals a day and to take a more holistic view of person-centred food and drink delivery over the whole day when people living with dementia are ready to eat [ 23 ]. Meals may need to be enriched with additional energy and protein, fortified snacks offered if weight loss has occurred, thus highlighting the need to identify those who have lost weight and at risk from under nutrition [ 24 , 25 ]. The findings supported the need to modify food to encourage independent eating e.g. finger foods, use of mini meals, grazing menus particularly for people who elicit wandering patterns of behaviour [ 26 , 27 ]. In some people food texture may require modification if there is difficulty chewing (though attention to dentition was emphasised as a common issue) and swallowing problems [ 28 ]. However the importance of maintaining dignity was highlighted and the use of innovative ways to improve the presentation of foods.

As sensory systems decline with aging, the findings support the need to present food and drink in an appealing and appetizing way in order to facilitate and encourage intake by working with a person’s preferences by boosting flavour, colour, taste and appearance [ 29 , 30 ]. This aspect may also be determined by other diet-related issues e.g. food allergies, constipation or comorbidities e.g. type 2 diabetes.

As dementia progresses the decreased ability to remember to eat, to recognise food and eat independently and the need for constant negotiation and support during meals were reported. The findings support previous observations to encourage eating and drinking and that caregiver assistance should be tailored to suit a person’s needs, using verbal cues, positive reinforcement whilst helping to retain independent eating and ensuring dignity [ 20 ]. Studies have shown that increased time spent by care staff and nurses to support people during meals may positively affect eating behaviour, intake and nutritional status [ 26 , 31 ].

The findings supported the use and application of nutrition screening [ 18 ], to identify those at risk of undernutrition and ensure a person-centred approach is taken to provide food and drink to people with dementia to improve intake. The use of appropriate resources and specialised equipment (e.g. adaptive crockery and utensils, no-spill cups) to support eating and drinking were recommended, with guidance offered by health care professionals as required. Previous studies support the use of high-contrast coloured crockery and tableware [ 32 ], though there is a lack of consensus of which type of colour to use to improve eating performance of food intake they point towards recognising a person’s preferences.

Environmental factors including eating location and arrangement, ambient sounds and music, smell, temperature, lighting and food presentation were reported to have an important role in reducing stress and anxiety at mealtimes and support previous observations [ 33 ]. These aspects have been the attention of recent systematic reviews [ 3 , 16 ], that have described improvements in behavioural symptoms and dietary intake as a result of improved lighting, relaxing music and offering more homelike food service and environment.

The relationship to others when eating and drinking was another theme that emerged from the presence of others—other residents, staff and family members. This observation supports a previous study that demonstrates positive effects on body weight and eating behaviour in care units as a consequence of shared mealtimes between residents and care givers [ 34 ]. However the present study adds that it was important to recognise and respect a person’s preferences to eat alone and that preferences can change with the progression of dementia, mood and personalities.

The findings in the present study demonstrated the way in which ‘participation in activities’ around mealtimes can engage residents to evoke memories (e.g. through themed days, celebratory events). They can stimulate appetite through the physical nature of the activity e.g. gardening, preparing meals but also positively impact on quality of life. Thus these activities were key to engage residents with past memories and providing a sense of purpose and involvement whilst promoting a person’s independence and promote dignity. A previous study has shown that activity associated with living in ‘care farms’ can stimulate dietary intake through additional leisure and recreational activities [ 35 ]. There is also growing interest in the benefits of growing food and horticultural therapy as a means to improve physical and psychological wellbeing and social integration [ 36 , 37 ]. Moreover behavioural interventions in residential long term care such as involving people with dementia in meal preparation have been shown to support social engagement and self-feeding [ 38 ]. However what has been revealed in the present study is the importance and benefits of providing and engaging residents in a wide range of food-related activities. More research is needed to understand how participation in activities can improve eating performance and food intake and the overall health and wellbeing of people living with dementia.

The prioritisation and consistency in the provision of nutritional care was reported by all those responsible for the delivery of food and nutritional care. The central importance of communication (both verbal and non verbal) and relationship building in the provision of compassionate care across all settings in general has been discussed in the literature [ 39 ]. However in the present study, the findings reveal the barriers evident to providing good nutritional care that could be attributed to poor communication between carers (both formal and informal), high staff turnover and poor record keeping.

The provision of evidence-based information on nutrition and hydration in an accessible format was clearly articulated by participants who discussed the need for education and training. Knowledge of nutrition in the course of the disease and on adequate intervention and communication is essential to provide appropriate nutritional care for people with dementia. There have been several studies that have tested teaching and training interventions for caregivers and nursing staff. They have shown positive effects of caregiver training and education with respect to knowledge and attitudes of caregivers and the nutritional situation of people with dementia [ 4 ]. Specifically certain interventions such as ‘Montessori methods’ and ‘spaced retrieval training’ have been shown to be effective in improving eating performance [ 40 ]. However the review by Liu et al. [ 15 ] showed that the duration of such approaches in studies were relatively short and implemented by trained research assistants/researchers and recommend that training should be undertaken by nursing caregivers (rather than research assistants) to improve eating performance.

We used several strategies to improve the quality of analysis and trustworthiness of results: triangulation of researchers, and discussions of interim and final analyses with authors who have different backgrounds. However the present study may be limited by collection of data across one regional area. The findings may not reflect the opinions and perceptions of those who work in other nursing homes or live in other parts of the country that would capture more diversity across different cultures and ethnic groups. However the region covered reflects disproportionately more older people than the rest of the country and offers a unique mixture of care staff in different roles and positions and levels of leadership. Thus by drawing on combinations of front-line staff managers and informal carers it has been possible to explore nutritional care from multilevel perspectives of ‘what works’. As such the sampling approach was purposive for those organisations known for their ‘good practice’. We recognise that the present research did not seek the perspectives of people living with dementia in care homes and would require further investigation.

In conclusion, the present study has identified key themes that have informed the development of a conceptual model to guide improvements in nutritional care by those responsible for the delivery of food and nutrition in dementia in nursing homes. Through this evidence-informed model we have since implemented new education and training tools (workbook and film) for caregivers to improve their knowledge, understanding and delivery of nutrition in dementia ( www.bournemouth.ac.uk/nutrition-dementia ). Further research is needed to evaluate the effectiveness of such evidence-based interventions and their impact on practice to directly support eating and drinking in people with dementia.

Abbreviations

Director of nursing

Family carer

Hospitality manager

Malnutrition Universal Screening Tool

Speech and language therapist

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Acknowledgements

We thank and acknowledge the cooperation of all the participants in the study who volunteered their time and gave accounts of experiences without which none of the work would have been possible.

Research funding support was provided by the Burdett Trust for Nursing (REF 353) and is gratefully acknowledged.

Availability of data and materials

The raw data is available by email on reasonable request to the corresponding author. E-mail: [email protected]

Authors’ contributions

JM was the primary investigator, leading the study, conceptualization and study design, analysis and writing of the manuscript. JH was a co-investigator, conceptualization and study design, participated in data collection, analysis and writing of the manuscript. CB was a research assistant who was funded by the study, involved in collecting and analysing data and helped to draft the manuscript. All authors read and approved the final manuscript.

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The authors declare that they have no competing interests.

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Ethical approval for the study was obtained from Bournemouth University Research Ethics Committee. Informed written and verbal consent was provided throughout the study.

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Murphy, J.L., Holmes, J. & Brooks, C. Nutrition and dementia care: developing an evidence-based model for nutritional care in nursing homes. BMC Geriatr 17 , 55 (2017). https://doi.org/10.1186/s12877-017-0443-2

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Received : 06 August 2016

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DOI : https://doi.org/10.1186/s12877-017-0443-2

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