Behavioral and psychological symptoms of dementia
The qualitative component of this review will consider studies that investigate the experience of being involved in nursing interventions to improve the care of people with dementia, and may include perspectives of people with dementia, caregivers, or nurses.
This review will consider studies that investigate nursing interventions to improve care in acute care hospitals. Studies set in any hospital unit or group of units will be included, including medical and surgical units, intensive care units, and emergency departments. The review will exclude studies on care provided in subacute care units where patients have been medically discharged (eg, alternate level of care units or rehabilitation units) and long-term care settings. There will be no limits on geographic location.
This review will consider quantitative, qualitative, and mixed methods studies. Quantitative studies will include experimental and quasi-experimental designs. Qualitative studies will include grounded theory, phenomenology, ethnographies, or other qualitative designs. Mixed methods studies will be considered only if data from the quantitative or qualitative components can be clearly extracted.
The proposed systematic review will be conducted in accordance with the JBI methodology for mixed methods systematic reviews. 25
The search strategy will aim to locate published and unpublished studies. An initial limited search of MEDLINE and CINAHL was undertaken to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for CINAHL (EBSCO) (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included database and/or information source. The reference lists of all included sources of evidence will be screened for additional studies.
The databases to be searched include CINAHL (EBSCO), MEDLINE (Ovid), Embase (Elsevier), and Scopus (Elsevier). The search of unpublished studies and gray literature will include governments websites, health authorities, and organizations focused on specialized research, education, or advocacy. This will be guided by the CADTH Grey Matters tool 26 as well as Alzheimer's Disease and Dementia (US), Alzheimer Society of Canada, and Alzheimer's Society (UK). Additional literature will come from Digital Dissertations, DiVA (dissertations and other publications in full text from Nordic universities), Networked Digital Library of Theses and Dissertations, ProQuest Dissertations and Theses Global, and Google Scholar.
Studies in any language will be included, and those selected for full-text screening will be translated as necessary. We will use Google Translate when possible to screen sources and extract findings. We may also contact other JBI Centers to request support with translation of articles or pay for professional translation services. Studies published since the inception of the databases will be included.
Following the search, all identified citations will be collated and uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia). Following a pilot test, titles and abstracts will be screened by two or more independent reviewers for assessment against the inclusion criteria. The full text of selected citations will be assessed in detail against the inclusion criteria by two or more independent reviewers. Reasons for exclusion of papers at full-text screening that do not meet the inclusion criteria will be recorded and reported in the systematic review. Any disagreements that arise between the reviewers at each stage of the selection process will be resolved through discussion or with an additional reviewer. The results of the search and the study inclusion process will be reported in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. 27
Quantitative papers (and quantitative components of mixed methods papers) selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review, using standardized JBI critical appraisal instruments from the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). 28,29 Qualitative papers (and qualitative components of mixed methods papers) selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review, using the standardized critical appraisal instrument from JBI SUMARI. 29,30
Authors of papers will be contacted to request missing or additional data for clarification, where required. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in narrative format and in a table.
All studies, regardless of the results of their methodological quality assessment, will undergo data extraction and synthesis, where possible. Results of the quality assessment will be considered in the analysis of findings and in the development of practice and policy recommendations.
For the quantitative component, data will be extracted from quantitative and mixed methods (quantitative component only) studies included in the review by two independent reviewers using the standardized JBI data extraction tool. 28 Extracted data will include details about the population, intervention, comparator, and outcomes used to evaluate the effectiveness of the interventions. For the qualitative component, data will be extracted from qualitative and mixed methods (qualitative component only) studies included in the review by two independent reviewers using the standardized JBI data extraction tool. 30 The data extracted will include specific details about the population, context, culture, geographical location, study methods, and the phenomena of interest relevant to the review objective. The findings, and their illustrations, will be extracted and assigned a level of credibility.
Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.
This review will follow a convergent segregated approach to synthesis and integration according to the JBI methodology for mixed methods systematic reviews using JBI SUMARI. 25 This will involve separate quantitative and qualitative synthesis followed by integration of the resultant quantitative and qualitative evidence.
For quantitative synthesis, studies will, where possible, be pooled with statistical meta-analysis using JBI SUMARI. Effect sizes will be expressed as either odds ratios (for dichotomous data) or weighted (or standardized) final post-intervention mean differences (for continuous data), and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard χ 2 and I 2 tests. Statistical analyses will be performed using random or fixed affects, as appropriate for the data extracted. 31 Subgroup analyses will be conducted where there are sufficient data to investigate dementia stage or age. If cost data are extracted (eg, the costs of one-on-one observation), we will present the data narratively. We do not expect to see cost-effectiveness research on this topic. Sensitivity analyses will be conducted to test decisions on methodological quality. Where statistical pooling is not possible, the findings will be presented in narrative format, including tables and figures to aid in data presentation, where appropriate. A funnel plot will be generated using IBM SPSS v27 (Armonk, NY: IBM Corp) to assess publication bias if there are 10 or more studies included in a meta-analysis. Statistical tests for funnel plot asymmetry (Egger test, Begg test, Harbord test) will be performed where appropriate.
For qualitative synthesis, the findings will, where possible be pooled using JBI SUMARI with the meta-aggregation approach. 32 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing them based on similarity in meaning. These categories will then be subjected to a synthesis to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative format.
To integrate quantitative evidence and qualitative evidence, the findings of each single method synthesis included in the review will be configured according to the JBI methodology for mixed methods systematic reviews. 25 This will involve quantitative evidence and qualitative evidence being juxtaposed and organized into a line of argument to produce an overall configured analysis. Where configuration is not possible, the findings will be presented in narrative format.
Cinahl (ebsco).
Date searched: June 24, 2021
acute care; dementia; interventions; nursing
Nursing knowledge on skin ulcer healing: a living scoping review protocol, nurse-led care management models for patients with multimorbidity in hospital..., impact of liver disease on patients’ quality of life: a mixed methods..., barriers and facilitators influencing adherence to occupational therapy home..., impact of clinical supervision of health professionals on organizational....
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Published by Alvin Nicolas at January 10th, 2023 , Revised On May 8, 2024
Choosing an appropriate nursing dissertation topic is an extremely important step toward producing an exciting and manageable research study. This post aims to help medicine and nursing students select the most appropriate dissertation title according to their research interests.
It should be noted that the subject of nursing encompasses various areas of knowledge, including but not limited to general nursing, community nursing, public health , environmental health, mental health, clinical management, health organization, and occupational health and safety.
So there is plenty to whet your appetite here. Nursing dissertations can be based on either primary research or secondary research. Primary data nursing dissertations incorporate the collection and analysis of data obtained through questionnaires and surveys. Secondary data nursing dissertations, on the other hand, make use of existing literature to test the research hypothesis .
To help you get started with brainstorming for medicine and nursing topic ideas, we have developed a list of the latest nursing dissertation topics that can be used for writing your dissertation.
These topics have been developed by PhD-qualified writers of our team , so you can trust to use these topics for drafting your dissertation.
You may also want to start your dissertation by requesting a brief research proposal from our writers on any of these topics, which includes an introduction to the problem, research questions , aim and objectives , literature review along with the proposed methodology of research to be conducted. Let us know if you need any help in getting started.
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Topic 1: assessing the parental perceptions and attitude towards the adoption of healthy behaviour patterns to control obesity and overweight concerns in young children..
Research Aim: This study aims to analyse the parent’s perceptions and attitudes in relation to healthy behaviours practises to control obesity and overweight disorders in young children. It will also focus on the obstacles parents or caregivers experience when it comes to obesity control in young children.
Research Aim: This study aims to find the usefulness of nursing practise for the care of people suffering from dementia. This will also focus on how trained nurses are very professional in providing information and support to the people suffering from dementia so that they can prepare themselves to live their life well with dementia. This study will conduct a systematic review of published literature to find the potential roles of nurses in taking care of people living with dementia. Furthermore, it will also look at various characteristics and effectiveness of nurse interventions.
Research Aim: Midwives are health professionals who are specialised in taking care of pregnant women and newborn health. Women living In low-income countries are far less to get midwifery care, and it is very challenging for them to face this situation. The aim of this study is to find the role of midwives in providing medical services to pregnant women in low-income countries. Furthermore, this study will also look at the challenges and factors in getting midwifery care for women faced with low income.
Research Aim: Nurses working in critical care had significantly higher rates of emotional discomfort and poor health than other nurses, which has a negative impact on their mental health. However, it is unknown how intensive care nurses’ physical health impacts the frequency of medical mistakes. This study will examine the mental health of nurses working in ICU and how it affects their work and causes medical errors. Furthermore, it will also analyse the perception of nurses working in ICU.
Research Aim: This study’s primary goal is to compare nursing staff practises during the stages of newborn development in the US and UK. This study will compare the effects of nurses’ care practises and will look at the challenges that occur during this process and how they handle these challenges.
Topic 1: research to identify the training resources of nurses to combat the covid-19 pandemic.
Research Aim: Nursing staff plays a vital role in treating and recovering patients from illness. This study will identify the training programs and resources designed for nursing staff to combat the Coronavirus pandemic.
Research Aim: Medical teams across the globe have been on their toes to combat coronavirus, and substantial human resources have also been invested in overcoming this crisis. This study will focus on collecting information about the idea of using robotic nurses to treat patients of Covid-19. It will reveal the advantages and disadvantages of using robotic nurses.
Research Aim: This study will focus on analysing the risks faced by nurses and the medical team. It will discuss the safety measures adopted to protect the medical staff, the challenges they face, and appropriate solutions to minimise them.
Research Aim: This study will focus on identifying the impacts of coronavirus on pharmaceutical industries, production, and supply of medicines. It will discuss the possible ways to combat COVID-19.
Research Aim: This study will focus on identifying the contributions of pharmaceutical industries to combat Covid-19. Did COVID-19 increase the business of pharmaceutical sectors?
Topic 1: impact of coronavirus on the pharmaceutical industry.
Research Aim: This research aims to identify the impact of Coronavirus on the pharmaceutical industry.
Research Aim: This research aims to measure the impact of occupational safety and health in medical clinics.
Research Aim: This research aims to address increasing work pressure and occupational health concerns during a pandemic.
Research Aim: The quality improvement of the performance of health care includes scientific study. The research team from the place where there was a shortage of research has established a steadily growing spectrum of testing within the Bradford Teaching Hospitals Foundation Trust. In this research, the main emphasis would be on the key role of research nurses.
Research Aim: The concept of nursing has evolved since recent times. Many health care institutions have developed effective strategies to increase nursing efficiency. Therefore, the main purpose of the research is to develop effective nursing strategies for dealing with patients possessing acute and chronic pain by analysing the case study of the NHS.
Research Aim: Nursing and health care needs have a direct and positive relationship. The main purpose of this research is to conduct a critical analysis of community and health care needs. This research will compare the UK and USA nursing practices and provide recommendations to improve the existing strategy.
Research Aim: The purpose of this study is to contemplate upon the key benefits that the use of Marijuana, within a medicinal capacity, has. Ideally, in developing countries, the use of marijuana is considered “Taboo” or unacceptable by the members of the community/society. Hence, the study intends to analyze the societal acceptance of Marijuana within developing countries.
Research Aim: The coronavirus has taken the world by storm, infecting millions in nearly 200 countries. Many health care institutions have developed strategies to increase nursing efficiency. Therefore, the main purpose of the research is to identify effective nursing strategies for dealing with patients possessing coronavirus by analysing the case study of NHS.
Research Aim: This research will discuss the basic life cycle and replication of the well-studied coronavirus, mouse hepatitis virus (MHV), identifying the unique characteristics of coronavirus biology and highlighting critical points where research has made significant advances, and which might represent targets for antivirals or vaccines. Areas where rapid progress has been made in SCV research, will be described. Finally, areas of need for research in coronavirus replication, genetics, and pathogenesis will be summarised.
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As a student of medicine and nursing looking to get good grades, it is essential to develop new ideas and experiment with existing medicine and nursing theories – i.e., to add value and interest in the topic of your research.
The field of medicine and nursing is vast and interrelated to so many other academic disciplines like civil engineering , construction , law , healthcare , mental health , artificial intelligence , tourism , physiotherapy , sociology , management , marketing, cryptocurrencies and architecture . That is why it is imperative to create a project management dissertation topic that is articular, sound, and actually solves a practical problem that may be rampant in the field.
We can’t stress how important it is to develop a logical research topic; it is the basis of your entire research. There are several significant downfalls to getting your topic wrong; your supervisor may not be interested in working on it, the topic has no academic creditability, the research may not make logical sense, and there is a possibility that the study is not viable.
This impacts your time and efforts in writing your dissertation as you may end up in the cycle of rejection at the very initial stage of the dissertation. That is why we recommend reviewing existing research to develop a topic, taking advice from your supervisor, and even asking for help in this particular stage of your dissertation.
While developing a research topic, keeping our advice in mind will allow you to pick one of the best medicine and nursing dissertation topics that fulfil your requirement of writing a research paper and add to the body of knowledge.
Therefore, it is recommended that when finalizing your dissertation topic, you read recently published literature to identify gaps in the research that you may help fill.
Remember- dissertation topics need to be unique, solve an identified problem, be logical, and be practically implemented. Take a look at some of our sample medicine and nursing dissertation topics to get an idea for your own dissertation.
A well-structured dissertation can help students to achieve a high overall academic grade.
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Even though event management seems easy, it is actually quite complex once you study it. If you study event management with an instructor who is committed to teaching you with integrity, it can be manageable.
The study of cognitive psychology focuses on how the brain processes and stores information. The underlying mechanisms are investigated using experimental methods, computer modeling, and neuropsychology.
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Digital Commons @ USF > College of Behavioral and Community Sciences > School of Aging Studies > Theses and Dissertations
Theses/dissertations from 2024 2024.
Retirement and Cognitive Aging: Modifying Factors , Britney M. Veal
Contribution of Contextual Factors and Neuropathology to Dementia , Monica E. Nelson
Complaint Patterns in US Nursing Homes: 2013-2017 , Kallol Kumar Bhattacharyya
Assisted Living Administrators’ Perspectives of how COVID-19 Affected Direct Care Staff , Carlyn E. Vogel
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
Assisted Living Facilities in Florida: Examining the Factors Associated with Entries, Closure, and Licensure Change , Joseph W. June
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
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
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
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
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
"Having Our Say": Exploring the Processes and Feasibility of a Community-Based Participatory Intergenerational Physical Activity Program for Grandparents Raising Grandchildren , Tiffany Lenell Young
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
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
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
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
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
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
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
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
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
Evaluation of the Prognostic Criteria for Medicare Hospice Eligibility , D Helen Moore
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Jacqueline crowther.
Academic Palliative and Supportive Care Studies Group (APSCSG) and Primary Care and Mental Health, University of Liverpool, Liverpool, UK
St Luke’s Hospice, Winsford, UK
Department of Psychiatry, University of Liverpool, Liverpool, UK
Professor, Primary Care and Mental Health, Liverpool Health Partners and University of Liverpool, Brownlow Hill, Liverpool L69 3GB, UK
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.
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
What this paper adds
Implications for practice theory or policy
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 ).
Place of death | Number | % |
---|---|---|
District general hospital | 22 | 55 |
Care home | 14 | 35 |
Family home | 4 | 10 |
Gender | ||
Male | 10 | 25 |
Female | 30 | 75 |
Relationship to person who had died with dementia | ||
Husband | 7 | 17.5 |
Wife | 17 | 42.5 |
Son | 3 | 7.5 |
Daughter | 10 | 25 |
Other family | 2 | 5 |
Friend/neighbour | 1 | 2.5 |
Age range of person with dementia | Mean age | |
69–96 years | 81.5 years | |
Time spent caring | Mean time caring | |
18 months–20 years | 5.1 years | |
Time since death | Mean time since death | |
3 months–5 years | 1.7 years |
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.
Participant | Initial coding | Text: | Memos: |
---|---|---|---|
Family Carer 36 | Control, collaboration, attempts to include as well as being/feeling excluded, anger towards formal carers vulnerability of person with dementia | “and then like when they wanted to turn her and change her position, they were very good and she had mouth care and they asked if I wanted to do it and things like that, she really didn’t need a lot of care towards the end, mum she was just never, she was just so undemanding, she was amazing, didn’t really need very much so when we were asked to leave the room, we both went out the room, Dad used to get very angry about that ‘why you putting me out?’ and things like that and so forth . . .” | Person with dementia so dependent upon others now for all activities of daily living interpreted by daughter as undemanding, is this measured by communication and requesting things verbally? Appeared to demand high levels of input from formal carers, could be interpreted as being demanding by them?? Demanding upon resources?? Daughter feeling excluded from care, explanations for this action from formal carers could have reduced anger felt at exclusion, similar to other scripts. Family carer 14 |
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)
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)
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)
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.
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.
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.
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.
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
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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Definition | Dementia a severe chronic disorder of higher nervous activity, the cause of which is an organic lesion of the brain. |
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Specialty | Neurology |
History | Memory impairment and other symptoms of dementia have been described since ancient times. The most well-known type of dementia is Alzheimer’s syndrome discovered by German psychiatrist Hans Alzheimer. Over the past 30 years, many studies have been carried out that have allowed modern medicine to much better understand the nature of dementia, its epidemiology, pathogenesis, and consequences. |
Symptoms | Dementia manifests itself in a sharp decrease in mental abilities, in the loss of existing knowledge and skills, and in the impossibility of acquiring new ones. The clinical picture of dementia in the elderly depends on the initial state of the body, on the causes of brain damage, on the extent and localization of this lesion. |
Causes | The causes of senile dementia are lesions of the central nervous system, which are caused by diseases that can lead to degeneration and death of brain cells. In Alzheimer’s disease, Pick’s disease, or a diagnosis such as dementia with Lewy bodies, destruction of the cerebral cortex is an independent cause. |
Prevention | For the prevention of dementia, it is important to train memory and thinking, learn new things, read, and continue intellectual activity, maintain regular dosed physical activity. |
Diagnostic Method | To diagnose dementia at an early stage, a doctor usually conducts a series of tests and interviews. At the same time, not only the patient is questioned, but also their close relatives. The final diagnosis is possible only if the violations are observed for at least six months. To assess cognitive functions and the general level of consciousness, the patient is offered to perform several simple tests, based on the results of which conclusions are drawn. |
Treatment | The treatment of dementia is primarily aimed at slowing down the process, relieving symptoms, personal and social adaptation of the patient, and prolonging his life. Drug therapy is the main method in the treatment of dementia, since in some cases it can correct the worsening of the symptoms of the disease. |
Duration | The disease lasts six to eight years and ends with death in a state of deep insanity. |
Prognosis | Senile dementia at any of its stages has a tendency to develop. With a timely visit to the doctor, it is possible to correct the course of the disease, postponing the onset of its severe stage. |
Complications | Total dementia is a complete disintegration of the personality with a violation of the intellectual sphere, gross changes in emotional and volitional activity. There is a complete loss of spiritual values, the impoverishment of vital interests, the disappearance of a sense of shame, and the emergence of complete maladaptation in the social environment. The next stage of the disease’s development is death. |
Frequency in Population | Approximately 5% of the population over 65 years of age have severe dementia, and 9–16% have mild to moderate dementia. The prevalence of dementia increases with age: up to 20% in people aged 80 and over. |
Deaths | The WHO estimates that the global number of deaths due to dementia will increase by over 40% from 2015 to 2030. |
Society | Dementia is considered one of the most severe and painful diseases – not only for the patient, but for their relatives, too, as the psychological and physical burden of care leis mainly on them. |
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NursingBird . "96 Dementia Research Topics & Essay Examples." June 4, 2024. https://nursingbird.com/topics/dementia-research-topics/.
🏆 best dementia topic ideas & essay examples, 💡 interesting topics to write about dementia, ⭐ good research topics about dementia, 📝 simple & easy dementia essay titles, ❓ research questions about dementia.
IvyPanda. (2024, March 2). 131 Dementia Essay Topic Ideas & Examples. https://ivypanda.com/essays/topic/dementia-essay-topics/
"131 Dementia Essay Topic Ideas & Examples." IvyPanda , 2 Mar. 2024, ivypanda.com/essays/topic/dementia-essay-topics/.
IvyPanda . (2024) '131 Dementia Essay Topic Ideas & Examples'. 2 March.
IvyPanda . 2024. "131 Dementia Essay Topic Ideas & Examples." March 2, 2024. https://ivypanda.com/essays/topic/dementia-essay-topics/.
1. IvyPanda . "131 Dementia Essay Topic Ideas & Examples." March 2, 2024. https://ivypanda.com/essays/topic/dementia-essay-topics/.
Bibliography
IvyPanda . "131 Dementia Essay Topic Ideas & Examples." March 2, 2024. https://ivypanda.com/essays/topic/dementia-essay-topics/.
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Aim: Review available evidence on teaching methods and learning outcomes among undergraduate nursing students regarding care for people with dementia.
Background: The debilitating nature and the rapidly growing number of dementia cases will cause significant increase in the demand of healthcare services. Nurses play an essential role in improving the quality of care for people with dementia, although some evidence suggests that training in dementia care among nurses is poor.
Design: A scoping review of the literature. following the Joanna Briggs Institute methodology for scoping reviews. The source of evidence selection adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review.
Methods: Data sources were Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, Web of Science, Education Resources Information Centre and Scopus. Inclusion criteria were studies found through database search up to 15th December 2020, published in English or Spanish with data regarding any method used for dementia education among undergraduate nursing students.
Results: 19 studies were included in this review. The identified methods were simulation (n = 5), awareness-raising activities (n = 4), placement (n = 3), home visits (n = 3), combined activities (n = 3) and service learning (n = 1). Learning outcomes were measured in terms of knowledge, attitudes, preparedness, empathy, self-confidence, self-efficacy, awareness and students´ perceptions.
Conclusions: This scoping review has found high heterogeneity among dementia education programs and learning outcomes. Nursing education can be enhanced by designing and measuring effective and evidence-based educational interventions so that nursing students develop competencies which make it easier to deliver quality care for people with dementia.
Keywords: Dementia; Evidence-based nursing; Nurse education research; Nursing care; Nursing students; Scoping review.
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Home » Blog » Dissertation » Topics » Nursing » Mental Health » Dementia Nursing Dissertation Topics (26 Examples) For Your Research
Mark Jun 13, 2020 Jun 13, 2020 Mental Health , Nursing No Comments
After delving into mental health nursing studies for hours, we have created a list of different dementia nursing dissertation topics for the students pursuing their career in the field of mental health and nursing. You can go through the list and choose any dementia nursing dissertation topics for your nursing project. These are some working […]
After delving into mental health nursing studies for hours, we have created a list of different dementia nursing dissertation topics for the students pursuing their career in the field of mental health and nursing.
You can go through the list and choose any dementia research topics for your nursing project. These are some working titles that will suit the master level courses. Our group of experienced writers can facilitate in completing a dissertation on your selected research topics on dementia nursing.
Check more nursing research topics here.
A literature review on the methods that can be applied for detecting dementia in the early stages.
Studying the importance of tracking behavioural and psychological changes for diagnosing dementia in the early stages.
Comparing the cognitive tests for detecting mild cognitive disorders – evaluation and validation of dementia.
Identifying the educational methods for overcoming problems in interaction in people with dementia.
Analysing and comparing the causes of dementia in both men and women.
Studying the consequences and prognosis of dementia.
Investigating the communicative strategies used by nurses for managing dementia.
Exploring dementia across cultural borders through reflections and patterns of older adults with dementia.
A literature review on Lewy body dementia – the quality of life, survival, and consequence.
Studying the neuropathological findings and staging in dementia.
Comparing dementia with other mental disorders.
How can nurses meet the needs of older adults with dementia?
A literature review of the adverse effects of dementia on the nutritional status of elderly patients in hospitals.
Exploring and comparing the experiences of patients with dementia using a case study approach.
How can nurses improve the quality of life of people with dementia?
Studying the practical development approaches that support nurses in taking care of patients with dementia.
A 10-year follow-up review of the literature to examine the non-pharmacological interventions for stress and aggression in people with dementia.
The role of nurses in the decision-making process of pain management for dementia patients.
Screening tools for primary care used for development and validation of dementia.
Benefits of dementia supporting training programs for nurses.
Factors linked with the quality of life of dementia caregivers.
How to improve the quality of life of care home residents with dementia.
Studying the importance of cost-effectiveness of an optimised intervention for a resident with dementia.
To analyse the effects of nursing care programmes on the quality of life of patients with advanced dementia.
The role of progressive support for routine activities for people with dementia.
How can nurses help in improving the psychosocial outcomes for people with dementia.
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Dementia is not just one disease but a collection of multiple symptoms and conditions. Therefore, you can find many dissertation topics on Dementia. Finding a list of nursing dissertation topics dementia patients could get help from could be very beneficial. You might be trying to make a contribution to help dementia patients move towards a better life. You have to explore some untouched aspects in order to help them!
If you want to contribute to help the people suffering from dementia with your dissertation, then you are in the right place. We have got a list of nursing dissertation topics dementia patients can benefit from. We make sure to bring something new to the table by selecting research topics on Dementia that haven’t yet been given as much attention.
Before we give you the best topics for your nursing dissertation to help dementia patients, we are going to give you some open-ended ideas. These are the amazing nursing dissertation ideas dementia experts would be interested in reading. You can craft Unlimited dementia dissertation topics from each of the ideas.
Make sure to create ideas that meet your dissertation requirements and guidance as well as your interests. It will help you speed up the research process and you will enjoy writing the dissertation as well.
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If you are having trouble crafting your own custom dissertation topics, here is the list of nursing dissertation topics dementia curated for you!
Before choosing the final dissertation topic, make sure that it complies with your dissertation guidelines. If your topic doesn’t meet the approval criteria then chances of your dissertation getting rejected are very high. Make sure to keep that in mind!
Needs of nursing staff in providing palliative care for people with dementia at home. New | |
Impact of nursing homes staff education on end-of-life care in residents with advanced dementia. New | |
Relationships between depression and pain in nursing home patients at different stages of dementia. New | |
Highlighting the genetical and environmental risks for the development of dementia among the elderly in the United Kingdom | |
Studying the importance of the care policy for elderly patients with dementia in the United States of America | |
Highlighting the nurse qualification and certification required for the care of elderly dementia patients in the United Kingdom | |
Understanding the patient’s quality of life. A case study of a patient suffering from dementia | |
What are the effective methods for dementia detection in the early stages in the United Kingdom? A critical study. | |
Critically analyzing the behavioral and psychological changes in a patient after being diagnosed with dementia. | |
An analysis of the factors that intensify risks for development of dementia at a young age in the United Kingdom | |
Why obesity is an additional risk factor for dementia? A case study. | |
What is the role of physical activity in improving mobility and stamina in patients with vascular dementia? An in-depth analysis | |
The role of modern technology in looking after people with dementia. A critical study of the dementia patients in the United Kingdom |
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" Where Is Wendy Williams? " Fans of the former talk show host who are still wondering this following the February release of a two-part Lifetime documentary on Williams have some answers now.
Williams, 60, has been spotted out and about for the first time since her private legal and medical issues became public earlier this year.
A Newark, New Jersey business shared last week that the former host of the long-running "The Wendy Williams Show," who has not been active on social media since 2022, stopped by to shop at the herbal supplement and holistic health product shop.
Bolingo Balance owner Víctor Bowman posted photos with Williams and her 24-year-old son, Kevin Hunter Jr. , on Instagram and Facebook . "Wendy Williams come to my store," Bowman wrote in his Facebook caption. "Much love Queen."
View this post on Instagram A post shared by African Bio Mineral Cell Food (@store.africanbiomineral)
Williams' son responded with an emoji-filled Instagram comment that seemed to indicate his wishes for his mom's well-being: "🙏🏽📈🤞🏽🤞🏽🤞🏽."
This outing was the first time Williams has been photographed in public since her team revealed in a February press release that she had been diagnosed with primary progressive aphasia and frontotemporal dementia. A few days later, the TV personality's declining health was the subject of "Where Is Wendy Williams?"
The docuseries shows Williams struggling with her health until she is eventually admitted to a treatment facility. In it, her family opens up about her dementia diagnosis while arguing for changes to the guardianship that she was placed under in 2022.
In the doc, Hunter claimed his mother was diagnosed with "alcohol-induced" dementia: "They basically said that because she was drinking so much, it was starting to affect her headspace and her brain," he said.
According to Alzheimers.gov , frontotemporal dementia is characterized by changes "in thinking and behaviors" such as movement, language and emotions that is caused by "a group of disorders that gradually damage the brain’s frontal and temporal lobes." The cause is "not yet fully understood."
In the doc, Williams' family also repeatedly criticized the court for appointing a guardian in 2022 to oversee her finances, stating they'd prefer a family member be in the position.
In February, the identity of Williams' temporary guardian – Sabrina Morrissey, an attorney who focuses on guardianships – became public when she filed a lawsuit against A+E Network in an attempt to halt the release of "Where Is Wendy Williams?" Morrissey argued in her filing that Williams "was not, and is not, capable of consenting to the terms" of the contract for filming the documentary.
At the time of the lawsuit, Williams was "under 24-hour medical care and supervision," Morrissey's filing claimed.
Morrissey, who had seen the unreleased documentary's trailer but not the project in its entirety, alleged that "the documentary exploits (Williams') medical condition to portray her in a humiliating, degrading manner and in a false light."
In response , an attorney for A+E Networks argued Morrissey tried to shut down the documentary only after seeing the way Williams' guardianship was depicted in the trailer.
Lifetime, which is owned by A&E Networks, proceeded with airing "Where Is Wendy Williams?" on Feb. 24 and Feb. 25 after an appellate judge said blocking it from airing would be an "impermissible prior restraint on speech" in violation of the First Amendment. The case is ongoing in New York.
In fall 2021, "Wendy" experienced several production delays and employed a rotating cast of guest hosts to take over the show.
However, "Wendy" was canceled in 2022 following Williams' medical leave during a battle with the autoimmune disorder Graves' disease. Williams has since maintained a low profile.
Contributing: Brendan Morrow
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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.
Dementia is a complex condition affecting millions of individuals globally, making it an essential field of study for nurses. However, with the rising number of enhancing the quality of life for patients and their families. Our carefully curated list of dementia nursing dissertation topics encompasses numerous aspects of this challenging condition.
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 ...
Dementia Nursing Dissertation Topics. Published by Owen Ingram at January 3rd, 2023 , Revised On August 16, 2023 The topic of dementia nursing is still unknown to many healthcare professionals and individuals despite the availability of many new sources and databases. Despite the fact that it is one of the most fulfilling careers, dementia ...
educational foundation geared towards assessment and management of pain in the. dementia patient will serve to enhance the quality of care delivered to this population. Chronic pain effects are a great contributor to the morbidity, mortality, and. disability of millions of people (Bernhofer & Sorrell, 2012).
Alzheimer's Dementia Care: Impact on Family Caregivers. by. Rose Anne Pierre. MD, Washington University School of Health Sciences, 2018. MPH, Walden University, 2015. BA, Florida Atlantic University, 2010. Doctoral Study Submitted in Partial Fulfillment. of the Requirements for the Degree of. Doctor of Public Health.
Introduction. The number of people with dementia has been growing and is set to surpass 75 million people globally by 2030. 1 With this expected demographic change, research has increasingly focused on improving health care services, such as acute hospital care, to become more responsive to the needs of people with dementia and their caregivers. Within acute care hospitals, there is a growing ...
Nursing and Medicine Dissertation Topics for 2023. Topic 1: Impact of Coronavirus on the pharmaceutical industry. Topic 2: The role and impact of occupational safety and health in medical clinics. Topic 3: Increasing work pressure and occupational health concerns.
Theses/Dissertations from 2021. PDF. Serious Mental Illness in Nursing Homes: Quality Concerns, Dylan J. Jester. PDF. Multidimensional Well-Being Across Time Scales in Caregivers and Non-Caregivers, Victoria R. Marino. PDF. Resilience and Health Outcomes of Sexual Minority Middle-Aged and Older Adults, Christi L. Nelson. PDF.
For patients with chronic cognitive decline or a diagnosis of dementia implement the following: Therapeutic communication strategies. Strategies to reduce internal stressors. Strategies to reduce external stressors. involve the family/caregiver in the plan of care when capable, willing, and appropriate.
Read our guide to inspire your research journey with a list of nursing dissertation topics that spark curiosity and offer meaningful investigations. Skip to content +1 (917) 781-1429 [email protected ... The effectiveness of person-centered care in dementia nursing; Midwifery Dissertation Topics. The role of midwives in improving maternal ...
What is already Known About the topic. Dementia is a life-limiting illness, but the diagnosis of dying can be difficult. ... Goodman C, Forggatt K, Amador S, et al. End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliat Care 2015; 14: 42.
Dementia Dissertation Topics: Explore compelling Dementia dissertation topics, delve into Nursing dissertation topics on dementia, and unravel the multifaceted dimensions of mental health challenges.Dementia, a pervasive issue, manifests through impairments in cognitive functions, memory, attention spans, and problem-solving capacities.
1. Introduction. Dementia is an umbrella term for several diseases which affect memory, language problems, problem-solving and behavior (Alzheimer´s Association, 2020) and accounts for 11.9% of years lived with disability due to a non-communicable disease.As the incidence of dementia is estimated to double with every 5.9-year increase in age, the global costs of caring for people with ...
Dementia of Alzheimer's Type and Its Diagnostics. This paper will define Alzheimer's disease and highlight some of the warning signs of the disease. It will also note the risk factors for the disease, diagnostic criteria. Physical Assessment of the Body System. This paper is a physical assessment of the body system.
Northern Ireland in providing care for patients with dementia and suggest ways in which care might be improved. A qualitative approach was carried out involving focus groups consisting of members of multidisciplinary primary care teams in Northern Ireland. The data collected was transcribed, coded and analysed using a template analysis method.
Changes in the Brain: Types of Dementia. According to Cavanaugh and Blanchard-Fields, dementia is a "family of disorders" that involves behavioral and cognitive deficits due to permanent adverse changes to the brain structure and its functioning. Dementia: Disease Analysis and Treatment Strategies.
Aim: Review available evidence on teaching methods and learning outcomes among undergraduate nursing students regarding care for people with dementia. Background: The debilitating nature and the rapidly growing number of dementia cases will cause significant increase in the demand of healthcare services. Nurses play an essential role in improving the quality of care for people with dementia ...
3 important areas of research to highlight. 1. Steps forward in spotting the early signs. It is often said that once you've met one person with dementia, you've met one person with dementia, because the condition can affect each person differently. Researchers think this might be why we've seen many unsuccessful trials in recent years.
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Nursing Dissertation Topics Dementia - Free download as PDF File (.pdf), Text File (.txt) or read online for free. Scribd is the world's largest social reading and publishing site.
List of Dementia nursing dissertation topics. A literature review on the methods that can be applied for detecting dementia in the early stages. Studying the importance of tracking behavioural and psychological changes for diagnosing dementia in the early stages. Comparing the cognitive tests for detecting mild cognitive disorders ...
Top Nursing Dissertation Topics Dementia Patients Can be Helped With. Dementia is not just one disease but a collection of multiple symptoms and conditions. Therefore, you can find many dissertation topics on Dementia. Finding a list of nursing dissertation topics dementia patients could get help from could be very beneficial. You might be ...
According to Alzheimers.gov, frontotemporal dementia is characterized by changes "in thinking and behaviors" such as movement, language and emotions that is caused by "a group of disorders that ...