Well-being In Dementia Research Articles

A new model to understand the complexity of inequalities in dementia

Many people living with dementia and unpaid carers experience inequalities in care related to challenges in receiving a correct diagnosis, care and support. Whilst complexities of the evidence are well recognised including barriers in receiving a diagnosis or post-diagnostic care, no coherent model has captured the far-reaching types and levels of inequalities to date. Building on the established Dahlgren & Whitehead Rainbow model of health determinants, this paper introduces the new Dementia Inequalities model. The Dementia Inequalities model, similar to the original general rainbow model, categorises determinants of health and well-being in dementia into three layers: (1) Individual; (2) Social and community networks; and (3) Society and infrastructure. Each layer comprises of general determinants, which have been identified in the original model but also may be different in dementia, such as age (specifically referring to young- versus late-onset dementia) and ethnicity, as well as new dementia-specific determinants, such as rare dementia subtype, having an unpaid carer, and knowledge about dementia in the health and social care workforce. Each layer and its individual determinants are discussed referring to existing research and evidence syntheses in the field, arguing for the need of this new model. A total of 48 people with lived, caring, and professional experiences of dementia have been consulted in the process of the development of this model. The Dementia Inequalities model provides a coherent, evidence-based overview of inequalities in dementia diagnosis and care and can be used in health and social care, as well as in commissioning of care services, to support people living with dementia and their unpaid carers better and try and create more equity in diagnosis and care.

Happiness, positive emotions, and subjective well-being in dementia.

Research on non-cognitive features of dementia traditionally focusses on neuropsychiatric symptoms and challenging behavior and thus on negative aspects of the disease. Despite the clinical observation that many patients frequently report subjective well-being and often express positive emotions there is only little research on the definition, measurement and determinants of subjective well-being and happiness in people living with dementia. Furthermore, the few studies there are, examined happiness using retrospective questionnaires and the accounts of relatives or caregivers. However, in dementia, the experiencing self becomes more significant since past and future thinking are fading into the background. Here, we review the relative scarce literature in this field, discuss different psychological constructs and their applicability for dementia research, and suggest methods for measuring the addressed constructs in people with dementia. In particular, we propose methodology to study happiness and positive emotions in the experienced moment of the participants using ecological momentary assessments (EMA). We believe that adequate measures of momentary subjective well-being might become an important outcome parameter in clinical dementia trials beyond the currently used quality of life measures.

Measuring self-compassion in people living with dementia: investigating the validity of the Self-Compassion Scale-Short form (SCS-SF)

Objectives Self-compassion may be a psychological resource for living well with dementia, but research is limited by the lack of a validated self-compassion measure for people with dementia. This study aimed to explore the SCS-SF’s psychometric properties as well as correlates of self-compassion for people with dementia. Method A total of 207 people with dementia were recruited to a cross-sectional survey involving the SCS-SF and measures of well-being, self-esteem, and depression. Data analyses (n = 193) included internal consistency reliability, correlational analyses, Exploratory Factor Analysis (EFA), plus ANOVAs and t-tests. Results Self-compassion significantly correlated positively with well-being and self-esteem, and negatively with depression. Reliability and preliminary construct validity of the SCS-SF was supported. EFA suggested two underlying factors formed by positive and negative components of self-compassion. The negative factor explained more variance and showed stronger correlations with total self-compassion, well-being, self-esteem, and depression compared to the positive factor. Self-compassion significantly differed based on age but not gender, dementia subtype or time since diagnosis. Conclusion The SCS-SF shows potential as a valid and reliable measure of self-compassion for people with dementia, but further research is needed. The SCS-SF may measure two distinct constructs, which possibly play different roles in relation to well-being in dementia: self-compassion and self-criticism. Clinicians and researchers may wish to interpret these factors separately.

Bio-Experiential Technology to Support Persons With Dementia and Care Partners at Home (TEND): Protocol for an Intervention Development Study.

Alzheimer disease and related dementias are debilitating and incurable diseases. Persons with dementia and their informal caregivers (ie, dyads) experience high rates of emotional distress and negative health outcomes. Several barriers prevent dyads from engaging in psychosocial care including cost, transportation, and a lack of treatments that target later stages of dementia and target the dyad together. Technologically informed treatment and serious gaming have been shown to be feasible and effective among persons living with dementia and their care partners. To increase access, there is a need for technologically informed psychosocial interventions which target the dyad, together in the home. This study aims to develop the toolkit for experiential well-being in dementia, a dyadic, "bio-experiential" intervention for persons with dementia and their caregivers. Per our conceptual model, the toolkit for experiential well-being in dementia platform aims to target sustained attention, positive emotions, and active engagement among dyads. In this paper, we outline the protocol and conceptual model for intervention development and partnership with design and development experts. We followed the National Institutes of Health (NIH) stage model (stage 1A) and supplemented the model with principles of user-centered design. The first step includes understanding user needs, goals, and strengths. We met this step by engaging in methodology and definition synthesis and conducting focus groups with dementia care providers (N=10) and persons with dementia and caregivers (N=11). Step 2 includes developing and refining the prototype. We will meet this step by engaging dyads in up to 20 iterations of platform β testing workshops. Step 3 includes observing user interactions with the prototype. We will meet this step by releasing the platform for feasibility testing. Key takeaways from the focus groups include balancing individualization and the dyadic relationship and avoiding confusing stimuli. As of September 2023, we have completed focus groups with providers, persons with dementia, and their caregivers. Additionally, we have conducted 4 iterations of β testing workshops with dyads. Feedback from focus groups informed the β testing workshops; data have not yet been formally analyzed and will be reported in future publications. Technological interventions, particularly "bio-experiential" technology, can be used in dementia care to support emotional health among persons with a diagnosis and caregivers. Here, we outline a collaborative intervention development process of bio-experiential technology through a research, design, and development partnership. Next, we are planning to test the platform's feasibility as well as its impact on clinical outcomes and mechanisms of action. DERR1-10.2196/52799.

Psychological well-being in persons with dementia: The role of caregiver expressed emotion.

Dementia is a growing health concern. Persons with dementia experience higher levels of anxiety and depression, which correlates with poorer quality of life, disability and hospitalization. This is one of the few studies to use a longitudinal design to assess the impact of expressed emotion (EE) on well-being in dementia over time. Sixty-one people with dementia and their main informal caregiver were recruited from memory services. Caregiver EE was coded from a Camberwell Family Interview conducted at time one. Person with dementia's outcome measures (quality of life, depression and anxiety) were collected at time one and at 6-months follow-up. Caregiver high EE was associated with higher levels of depression in people with dementia and greater anxiety at follow-up. Emotional over involvement predicted greater anxiety and critical comments predicted greater depression. Low EE appeared to have a protective effect on well-being in people with dementia. People with dementia with low EE caregivers experienced a small reduction in depression and anxiety over time, whereas those with high-EE caregivers maintained baseline levels of depression and anxiety. Caregiver high EE is associated with poorer psychological outcomes for people with dementia over time. Psychological therapies, such as cognitive behavioural therapy informed family interventions should be used to reduce high EE within carer and person with dementia relationships.

GENDER DIFFERENCES IN INTERACTIONS AND WELL-BEING AMONG HOSPITALIZED PATIENTS LIVING WITH DEMENTIA

Abstract While the incidence of dementia is generally higher in women compared to men, gender differences in interactions and well-being in dementia is still unclear. This study examined gender differences in interactions and well-being among hospitalized patients living with dementia. A total of 140 hospitalized patients (53% female and 47% male) were included in the analysis. On average, the participants were 81.43 years old (SD= 8.29), had positive interactions with staff based on higher scores on Quality of Interaction Schedule, QUIS (5.81, SD= 1.36), and fair emotional well-being based on lower scores on Cornell Scale for Depression in Dementia, CSDD (7.79, SD= 5.59). Although men seemed to have more positive interactions (male=6.07, SD=1.13; female=5.59, SD=1.51) and greater wellbeing (male=7.52, SD=4.77; female=8.03, SD=6.25) than women, there were no statistically significant gender differences observed in linear models with appropriate covariates. Future work should continue to explore gender differences in interactions and well-being.

What is intended by the term "participation" and what does it mean to people living with dementia? A conceptual overview and directions for future research.

Policy continues to emphasise the importance of wellbeing in dementia. However, there is a vital need for psychosocial interventions that can promote positive outcomes to enhance “living well with dementia”. Our developing understanding of what people living with dementia report as being important to them, has resulted in new interpretations of what constitutes wellbeing including constructs such as “growth”, “purpose” and “participation”. These exciting and important constructs are not currently captured by outcome measures within dementia research. This limits our understanding of the value of psychosocial interventions. This paper explores the concept of participation and how continued participation in social life can make a difference to the rights of people living with dementia as citizens. We will firstly consider why participation is important for how we might measure outcomes in dementia research and care. Secondly, we will explore how we might measure participation. Finally, we will consider the value of participation as a psychosocial outcome in future research.

An intervention to promote self-management, independence and self-efficacy in people with early-stage dementia: the Journeying through Dementia RCT.

There are few effective interventions for dementia. To determine the clinical effectiveness and cost-effectiveness of an intervention to promote self-management, independence and self-efficacy in people with early-stage dementia. To undertake a randomised controlled trial of the Journeying through Dementia intervention compared with usual care, conduct an internal pilot testing feasibility, assess intervention delivery fidelity and undertake a qualitative exploration of participants' experiences. A pragmatic two-arm individually randomised trial analysed by intention to treat. A total of 480 people diagnosed with mild dementia, with capacity to make informed decisions, living in the community and not participating in other studies, and 350 supporters whom they identified, from 13 locations in England, took part. Those randomised to the Journeying through Dementia intervention (n = 241) were invited to take part in 12 weekly facilitated groups and four one-to-one sessions delivered in the community by secondary care staff, in addition to their usual care. The control group (n = 239) received usual care. Usual care included drug treatment, needs assessment and referral to appropriate services. Usual care at each site was recorded. The primary outcome was Dementia-Related Quality of Life score at 8 months post randomisation, with higher scores representing higher quality of life. Secondary outcomes included resource use, psychological well-being, self-management, instrumental activities of daily living and health-related quality of life. Participants were randomised in a 1 : 1 ratio. Staff conducting outcome assessments were blinded. Outcome measures were administered in participants' homes at baseline and at 8 and 12 months post randomisation. Interviews were conducted with participants, participating carers and interventionalists. The mean Dementia-Related Quality of Life score at 8 months was 93.3 (standard deviation 13.0) in the intervention arm (n = 191) and 91.9 (standard deviation 14.6) in the control arm (n = 197), with a difference in means of 0.9 (95% confidence interval -1.2 to 3.0; p = 0.380) after adjustment for covariates. This effect size (0.9) was less than the 4 points defined as clinically meaningful. For other outcomes, a difference was found only for Diener's Flourishing Scale (adjusted mean difference 1.2, 95% confidence interval 0.1 to 2.3), in favour of the intervention (i.e. in a positive direction). The Journeying through Dementia intervention cost £608 more than usual care (95% confidence interval £105 to £1179) and had negligible difference in quality-adjusted life-years (-0.003, 95% confidence interval -0.044 to 0.038). Therefore, the Journeying through Dementia intervention had a mean incremental cost per quality-adjusted life-year of -£202,857 (95% confidence interval -£534,733 to £483,739); however, there is considerable uncertainty around this. Assessed fidelity was good. Interviewed participants described receiving some benefit and a minority benefited greatly. However, negative aspects were also raised by a minority. Seventeen per cent of participants in the intervention arm and 15% of participants in the control arm experienced at least one serious adverse event. None of the serious adverse events were classified as related to the intervention. Study limitations include recruitment of an active population, delivery challenges and limitations of existing outcome measures. The Journeying through Dementia programme is not clinically effective, is unlikely to be cost-effective and cannot be recommended in its existing format. Research should focus on the creation of new outcome measures to assess well-being in dementia and on using elements of the intervention, such as enabling enactment in the community. This trial is registered as ISRCTN17993825. This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 24. See the NIHR Journals Library website for further project information.

Exploring the Effects of a Golf Program on Psychological and Social Wellbeing for People With Dementia, Carers, and Staff.

There is a paucity of evidence regarding the effects of sport and physical activity on wellbeing in dementia. The present study is the first known study to involve golf with this population. People with dementia (n = 10) and carers (n = 5) participated in a 6-week golf program, facilitated by golf center staff (n = 3). Multiple avenues of data collection were utilized and were subject to thematic analysis. Five central themes were identified: emotion, respite, losing the "dementia" label, friendship/camaraderie, and improving relationships. Underlying subthemes were also identified, while potential links between themes were highlighted. Themes were also considered in terms of which participants (person with dementia, carer, and staff) provided evidence for each theme. This study presents preliminary support for the role of golf to enhance the psychological and social wellbeing of people with early stages of dementia, carers, and staff. Potential mechanisms and future research are discussed.

Dementia wellbeing and COVID-19: Review and expert consensus on current research and knowledge gaps.

ObjectivesIn response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research.MethodsWe supplemented a rapid literature search (including unpublished, non‐peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID‐19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature.ResultsThemes emerged from 141 studies within the six domains of the NHS England COVID‐19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population‐representative longitudinal studies to monitor longer‐term impacts, and the importance of reporting dementia‐related findings within broader health and care studies.ConclusionsThe COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence‐based measures to improve the quality of life of people affected by dementia.

Emotion regulation and decision-making in persons with dementia: A scoping review.

Background and ObjectivesEmotion is integral to decision-making, and emotion regulation is associated with improved well-being in older age. Persons with dementia are likely to experience impairments in emotion regulation processes that can potentially contribute to differential decision-making and well-being outcomes. To promote the development of theoretical models of well-being in dementia, we review the quantitative evidence concerning the associations between emotion regulation and decision-making in dementia.MethodsScoping review.ResultsSeven studies of persons with dementia met our criteria. In persons with frontotemporal lobar degeneration, emotion regulation processes that precede the emotional experience were associated with decision-making in a moral (but not uncertainty) context. Independent of type of dementia, evidence concerning the associations between emotion regulation processes that occur after emotion is experienced and decision-making was mixed and drew on different methodologies. No studies relating to the associations between decision-making in dementia and several emotion regulation processes and strategies were found.ConclusionsIn this review, we sought to clarify the concept of everyday decision-making in dementia and map the current state of evidence concerning its associations with emotion regulation. Our findings show that emotion regulation processes are associated with decision-making in dementia, depending on type of decision-making assessment and emotional experience. We outline the gaps in the literature to set a research agenda for promoting our understanding of how emotion regulation processes can shape the various decisions that are made by persons with dementia on a daily basis.

Stress, Burden, and Well-Being in Dementia and Nondementia Caregivers: Insights From the Caregiving Transitions Study.

Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being. Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being. Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures. Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home.

Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners.

Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer's Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). In adjusted models, the PWD's well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad's relationship. The CP's well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain. Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad's relationship quality.

Nostalgia as a psychological resource for people with dementia: A systematic review and meta-analysis of evidence of effectiveness from experimental studies.

If nostalgia is to be used as a clinical intervention to boost well-being in dementia by reducing threat, then it is important to assess its therapeutic potential. Results Searches carried out in July 2014 and updated in February 2018 identified 47 eligible experimental studies comparing nostalgic reminiscence and non-nostalgic reminiscence to be included in the meta-analysis. Nostalgic reminiscence had moderate effects on positive affect (0.51 (0.37, 0.65), p= 0.001), social connectedness (0.72 (0.57, 0.87), p= 0.001), self-esteem (0.50 (0.30, 0.70), p= 0.001), meaning in life (0.77 (0.47, 1.08), p= 0.001) and optimism (0.38 (0.28, 0.47), p= 0.001) and a large effect on self-continuity (0.81 (0.55, 1.07), p= 0.001). There was, however, no difference between the effect of nostalgic reminiscence and non-nostalgic reminiscence for negative affect (-0.06 (-0.20, 0.09), p= 0.443). Conclusion This systematic review and meta-analysis provides an overview of the evidence base for nostalgia. This is an important stage in developing nostalgia as a clinical intervention for people with dementia which might be achieved, for instance, by adapting current reminiscence and life review techniques. This meta-analysis will therefore also serve as a valuable reference point for the continued exploration of nostalgia as an intervention.

Enhancing Health and Wellbeing in Dementia

This book tackles the significant challenge of achieving integrated person-centred care for people with dementia and their families.

Enhancing Health and Wellbeing in Dementia: A Person-Centred Integrated Care Approach

Enhancing Health and Wellbeing in Dementia: A Person-Centred Integrated Care Approach

Enhancing Health and Wellbeing in Dementia: A Person-Centred and Integrated Care Approach, Shibley Rahman

Enhancing Health and Wellbeing in Dementia: A Person-Centred and Integrated Care Approach, Shibley Rahman

Revealing gendered identity and agency in dementia.

As identity and agency are central to the well‐being of people with dementia, this paper explores whether their dialogue conveys a gendered sense of identity and agency. The author discusses whether they demonstrate not just a subjective sense of being but also an understanding of their relational selves. Findings are presented from a qualitative study in the North of England which examined the everyday decisions made by married couples when one partner had dementia. Ethnographic methods were used, including participant observation and interviews. While dialogical analysis usually centres on the subjective self, it was also used to examine intersubjectivity. Comparisons are made between the dialogue of women and men in order to draw conclusions about the gendered nature of identity and agency. The study found that the women and men defined themselves according to their social and gender identities. The literature had suggested that agency might be a gendered concept and the study confirmed that men were somewhat individualistic and rational in their concerns, whereas women were more relational and even spiritual. Yet, women and men demonstrated emotional reflexivity. As national and international health policy prioritises living well with dementia, more systematic attention should be given to the role of gender in influencing well‐being in dementia. Health and social care staff should recognise and facilitate the gender identity and related social roles of people with dementia (e.g. parent, carer and worker) in order to enhance their quality of life.

Initiating activities of daily living contributes to well-being in people with dementia and their carers.

Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD. Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis. Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden. Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd.

Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners.

To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver's care-related preferences, the person with dementia's care-related preferences, and the caregiver's perception of the person with dementia's preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia's well-being.