Dementia Experience Research Articles

Systemic family therapists and dementia: A constructivist grounded theory study

AbstractThis article presents research that explored the ways that systemic and family therapists might approach the support of families living with dementia. A constructivist grounded theory methodology was used to interpret interviews with four systemic family therapists working in the United Kingdom. All participants had professional and/or lived experience of dementia. Transcript analysis and theoretical sampling led to the development of five categories, each related to different aspects of considering systemic therapy in a dementia context. These categories were further developed into a ‘systemically informed dementia orienteering’ conceptual framework, which is presented in this paper as a learning resource. Findings are related to existing literature, and recommendations for future research are made.

Pragmatic implementation of comprehensive dementia care management: The Cedars-Sinai C.A.R.E.S. Program preliminary data.

The United States faces a growing challenge with over 6.5 million people living with dementia (PLwD). PLwD and their caregivers struggle with cognitive, functional, behavioral, and psychosocial issues. As dementia care shifts to home settings, caregivers receive inadequate support but bear increasing responsibilities, leading to higher healthcare costs. In response, the Centers for Medicare & Medicaid Services (CMS) introduced the Guiding an Improving Dementia Experience (GUIDE) Model. The study explores the real-world implementation of the Cedars-Sinai C.A.R.E.S. Program, a pragmatic dementia care model, detailing its recruitment process and initial outcomes. The Cedars-Sinai C.A.R.E.S. Program was integrated into the Epic electronic health record system and focused on proactive patient identification, engagement, interdisciplinary collaboration, care transitions, and ongoing care management. Eligible patients with a dementia diagnosis were identified through electronic health record and invited to join the program. Nurse practitioners with specialized training in dementia care performed comprehensive assessments using the CEDARS-6 tool, leading to personalized care plans developed in consultation with primary care providers. Patients benefited from a multidisciplinary team and support from care navigators. Of the 781 eligible patients identified, 431 were enrolled in the C.A.R.E.S. Enrollees were racially diverse, with lower caregiver strain and patient behavioral and psychological symptoms of dementia (BPSD) severity compared to other programs dementia care programs. Healthcare utilization, including hospitalizations, emergency department (ED) admissions, and urgent care visits showed a downward trend over time. Completion of advanced directives and Physician Order of Life-Sustaining Treatment (POLST) increased after enrollment. The Cedars-Sinai C.A.R.E.S. Program offers a promising approach to dementia care. Its real-world implementation demonstrates the feasibility of enrolling a diverse population and achieving positive outcomes for PLwD and their caregivers, supporting the goals of national dementia care initiatives.

Shared Activities as a Protective Factor Against Behavioral and Psychological Symptoms of Dementia and Caregiver Stress.

Most persons with dementia experience behavioral and psychological symptoms (BPSD). While there is evidence that structured activity programs can be beneficial for persons with dementia and their caregivers, it is not well understood how joint engagement in shared activities affects BPSD and caregiver stress. The purpose of this study was to examine the moderating effect of doing a shared activity on the BPSD and caregiver stress. This study used an intensive longitudinal observational design in which caregivers completed baseline and once-a-day diary surveys for 21 days. Caregivers were asked whether they did a pleasant noncare activity with their relative, the presence of 8 BPSD, and their stress level. A moderation model in a structural equation model examined the relationship between these variables. Our sample consisted of 453 caregivers (87.4% female, 51.4% non-Hispanic White, mean age 53 years [standard deviation {SD}: 14]) and person living with dementia whose mean age was 79 years (SD: 9). On days when the caregivers engaged in a shared activity together with person living with dementia, there was a significant decrease in the BPSD (estimate -0.038, standard error [SE] = 0.016, 95% confidence interval [CI]: -0.069, -0.007, p value = 0.018). The effects of engaging in a shared activity decreased the impact of caregiver stress by 0.052 (estimate -0.052, SE = 0.018, 95% CI: -0.087, -0.017, p value = 0.004). At the between-person level, no differences were found in BPSD across caregivers who engaged or did not engage in shared activities. The results of our study indicate that doing a shared activity is associated with reduced BPSD among persons with dementia and may buffer the impact of caregiver stress on BPSD. Shared activities should be considered a key intervention component for dementia caregivers.

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia.

Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.

Soundscape augmentation for people with dementia requires accounting for disease-induced changes in auditory ccene analysis

Recently, there has been an increased interest in adapting the sonic environment to support people with cognitive difficulties, such as dementia. Research shows that incorporating “pleasant” sounds into the environment positively impacts behaviour and reduces psychological symptoms of dementia. Introducing sound into the acoustic environment creates an enhanced auditory experience, an augmented soundscape, resulting in an improved interpretation of the environment. People with dementia experience changes in their perception, which includes misperceptions, misidentifications, hallucinations, delusions, and time-shifting. Sound augmentation can support a better understanding of the environment and help in navigation time during the day. Dementia is a broad name for a degenerative disease; different types of dementia result in different syndromes and diverse auditory scene analyses. Some key auditory symptoms of different variants of the disease are auditory hallucinations, auditory disorientation, increased sound sensitivity, auditory agnosia (difficulty processing auditory input), agnosia for environmental sounds, amusia (tonal deafness) and Musicophilia. These different syndromes of auditory perception need more understanding when designing a soundscape augmentation for people with dementia. This talk aims to discuss different auditory symptoms of dementia based on a literature review and introduce ways to design an augmented soundscape to foster individual auditory needs.

Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme

ObjectivesLongitudinal evidence documenting health conditions in spousal caregivers of people with dementia and whether these influence caregivers’ outcomes is scarce. This study explores type and number of health conditions over two years in caregivers of people with dementia and subgroups based on age, sex, education, hours of care, informant-rated functional ability, neuropsychiatric symptoms, cognition of the person with dementia, and length of diagnosis in the person with dementia. It also explores whether over time the number of health conditions is associated with caregivers’ stress, positive experiences of caregiving, and social networksMethodsLongitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised spousal caregivers (n = 977) of people with dementia. Self-reported health conditions using the Charlson Comorbidity Index, stress, positive experiences of caregiving, and social network were assessed over two years. Mixed effect models were usedResultsOn average participants had 1.5 health conditions at baseline; increasing to 2.1 conditions over two years. More health conditions were reported by caregivers who were older, had no formal education, provided 10 + hours of care per day, and/or cared for a person with more neuropsychiatric symptoms at baseline. More baseline health conditions were associated with greater stress at baseline but not with stress over time. Over two years, when caregivers’ health conditions increased, their stress increased whereas their social network diminishedDiscussionFindings highlight that most caregivers have their own health problems which require management to avoid increased stress and shrinking of social networks

Moderating Role of Neighborhood Environment in the Associations Between Hearing Loss and Cognitive Challenges Among Older Adults: Evidence From US National Study.

This study examined the associations between hearing loss and cognitive challenges among community-dwelling older adults and whether neighborhood characteristics (physical disorder and low social cohesion) moderated the associations. Cross-sectional national data from Round 11 of the National Health and Aging Trends Study were adopted (N = 2,515). Multinomial logistic regressions were used to examine associations among variables and interactive analyses were conducted to examine moderating effects. Results indicated significant relationships between the experience of hearing loss and possible dementia and between severe or profound hearing loss and probable dementia. Interactive models suggested that residing in neighborhoods with physical disorder and low social cohesion were negatively associated with possible dementia among older adults with moderate and severe or profound hearing loss, respectively, compared to those without hearing loss. Findings underscore the necessity of environmental and social interventions to enhance cognitive health among older adults with varying degrees of hearing challenges.

Transforming Value-Based Dementia Care—Implications for the GUIDE Model

This Viewpoint reviews the Guiding an Improved Dementia Experience (GUIDE) Model to assess its suitability in providing equitable and cost-effective dementia care and to compare it with previously introduced specialty care payment models to identify opportunities for refining payment innovation in dementia care.

‘Something is dropped out of the journey of life’: perceived spaces of opportunity among people with dementia

Dementia brings forth different kinds of challenges to manage everyday life. Comprehension of the multidimensional nature of the challenges, varying from spatiotemporal disorientation to fears or lack of services gives us tools with which living as a good life as possible with dementia can be supported. The time-geography offers a useful approach to delve into the experiences of people by focusing on what individuals try/want to do in their environment and how they try to manage with growing difficulties. The time-geographic approach acknowledges individually perceived spaces of opportunities as being assembled of several human and non-human elements. This relational approach enhances understanding how the multiple interconnections among elements of disparate dimensions of time–space transform the lives of people with dementia illustrating the possible constraints and incentives they encounter in their activities. In this article, we examine the possible challenges people with dementia experience in their lives by using the time-geographical approach. In doing so, we demonstrate topics such as social relations and spatiotemporal shrinkage affecting the well-being of the participants. Moreover, we stress the need to conceptualize indirect constraints in the time-geographic approach.

Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.

Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minoritiesand partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing contentand promote the website within their communities. Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviewsand development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.

Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial

IntroductionMany people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives’ sleep disturbance...

L’expérience de transitions de conjoints-aidants d’une personne vivant avec un trouble neurocognitif à début précoce

Introduction : Les personnes vivant avec un trouble neurocognitif à début précoce (TNC-DP) éprouvent de nombreuses difficultés, tant dans leur vie professionnelle, personnelle, que familiale et conjugale, et le diagnostic prend souvent de nombreuses années à être posé. Pendant cette attente, peu de services adaptés sont disponibles. Des études ont décrit les changements qu’entraîne cette situation pour les conjoints, mais peu d’écrits se sont intéressés aux transitions qui jalonnent leur cheminement. Objectif : Explorer, chez des conjoints-aidants de personnes vivant avec un TNC-DP diagnostiqué depuis plus de 2 ans, les perceptions des transitions auxquelles ils font face, les conditions qui ont un impact sur la réussite des transitions, et les patrons de réponses qu’ils utilisent. Méthode : S’appuyant sur la théorie des transitions de Meleis et al. (2000), cette étude pilote a été réalisée au moyen d’entrevues semi-dirigées menées auprès de 3 conjoints-aidants. Le verbatim des entrevues transcrites a été analysé selon la méthode proposée par Paillé et Mucchielli (2021). Résultats : Les thèmes ayant émergé de l’analyse sont : 1) un long parcours de proche aidance jalonné de multiples transitions; 2) des conditions personnelles et communautaires qui influencent le succès des multiples transitions et 3) une variété de stratégies pour composer avec le rôle de conjoint-aidant. Discussion et conclusion : Les résultats de l’étude offrent un éclairage sur la réalité de certains conjoints-aidants. Ils peuvent inspirer la poursuite d’études avec un échantillon élargi et intégrant, par exemple, des méthodes mixtes, pour explorer davantage le vécu de ces aidants. Ils offrent aussi certaines pistes pour guider les professionnels de la santé dans l’évaluation de leurs besoins et suggèrent l’importance de développer des interventions et de services pour faciliter leurs diverses transitions.

Rural general practitioner confidence in diagnosing and managing dementia: A two-stage, mixed methods study of dementia-specific training.

Dementias a prevalent chronic healthcare condition affecting 46 million people worldwide and projected to grow in the coming years. Australians living in rural and regional areas often lack access to specialist dementia care, despite greater prevalence relative to metropolitan areas. This study aimed to explore general practitioners (GP) understanding, confidence and attitudes towards dementia management in the rural context, and design and pilot a dementia-specific training program. A two-stage, mixed methods design, using qualitative and quantitative methods. Sixteen regional GPs from across Victoria participated in scoping semi-structured interviews. Fourteen separate GPs in the St Anthony Family Medical Practice group in the regional Loddon-Mallee area of Victoria completed the pilot training intervention. Pre- and post-training surveys (n = 10), as well as post-training interviews (n = 10), assessed attitude and knowledge changes. Analysis of semi-structured scoping interviews indicated three themes regarding experience of dementia management, including: (1) attitudes to and experiences of dementia; (2) supporting people living with dementia; and (3) knowledge, education and training of dementia. The pilot dementia-specific training was found to improve attitudes (agreement across 24 best-practice indicators improved from 30% to 79%), knowledge (median increase of 2.5/10) and confidence in managing dementia and disclosing dementia diagnoses (median increase 3/10 and 2.75/10, respectively). General practitioners in this study lacked initial confidence in detecting and managing dementia in a rural primary care setting. A targeted training program showed improvements in these areas. Accessible, locally delivered, dementia education has the potential to improve confidence in early detection and management of people with dementia and thereby may address gaps in access to care for people living with dementia in rural settings.

Talk with Ted: an embodied conversational agent for caregivers

ABSTRACT Communication is key to the success of any relationship. When it comes to caregivers, having a conversation with a person living with some form of cognitive impairment, such as dementia, can be a struggle. Most people living with dementia experience some form of communication impairment that reduces their ability to express their needs. In this case study, we present the design of an embodied conversation agent (ECA), Ted, designed to educate caregivers about the importance of good communication principles when engaging with people living with dementia. This training tool was trialed and compared to an online training tool, with 23 caregivers divided into two cohorts (12 in the ECA condition, and 11 in the online training tool condition), over a period of 8 weeks using a mixed evaluation approach. Our findings suggest that (a) caregivers developed an emotional connection with the ECA and retained the learning from their interactions with Ted even after 8 weeks had elapsed, (b) caregivers implemented the learnings in their practice, and (c) the changes in care practice were well received by people living with dementia.

“We're still alive, much to everyone's surprise”: The experience of trans older adults living with dementia in an ageist, cisgenderist, and cogniticist society

Trans and non-binary older adults living with dementia experience forms of marginalization, pathologization, and discrimination embedded in epistemic violence that leads them to be mistreated and dismissed as knowledgeable subjects. Based on empirical findings from a Canadian study examining the experiences of trans and non-binary people living with dementia and their carers, we combat this epistemic violence by focusing on the first-hand narratives of this population and their carers. Narrative interviews were conducted with six participants (N = 6): four carers of trans and non-binary adults living with dementia and two trans (binary) people living with dementia. Through a thematic analysis, we examine the unique aspects of living with dementia as a trans or non-binary person. First, the findings show how cogniticism impacts the experience of gender identity and cisgenderism, for example through blocked surgeries, excessive gatekeeping, and not being taken seriously by practitioners. Second, the findings discuss how dementia impacts gender identity and cisgenderism, for example, by increasing the need for formal care that can in turn increase vulnerability to structural violence. Third, the findings illustrate how cisgenderism and gender identity impact the experience of dementia and cogniticism, for example by limiting care options and the ability to advocate for oneself. Fourth, the findings highlight the silo mentality among practitioners, since most of them do not work with an intersectional lens. The article concludes by offering recommendations.

Comorbid health conditions and their impact on social isolation, loneliness, quality of life, and well-being in people with dementia: longitudinal findings from the IDEAL programme

BackgroundMost people with dementia have multiple health conditions. This study explores (1) number and type of health condition(s) in people with dementia overall and in relation to age, sex, dementia type, and cognition; (2) change in number of health conditions over two years; and (3) whether over time the number of health conditions at baseline is related to social isolation, loneliness, quality of life, and/or well-being.MethodsLongitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised people with dementia (n = 1490) living in the community (at baseline) in Great Britain. Health conditions using the Charlson Comorbidity Index, cognition, social isolation, loneliness, quality of life, and well-being were assessed over two years. Mixed effects modelling was used.ResultsOn average participants had 1.8 health conditions at baseline, excluding dementia; increasing to 2.5 conditions over two years. Those with vascular dementia or mixed (Alzheimer’s and vascular) dementia had more health conditions than those with Alzheimer’s disease. People aged ≥ 80 had more health conditions than those aged < 65 years. At baseline having more health conditions was associated with increased loneliness, poorer quality of life, and poorer well-being, but was either minimally or not associated with cognition, sex, and social isolation. Number of health conditions had either minimal or no influence on these variables over time.ConclusionsPeople with dementia in IDEAL generally had multiple health conditions and those with more health conditions were lonelier, had poorer quality of life, and poorer well-being.

Survival analysis of older adults with dementia: predicting factors after unplanned hospitalization in Maharaj Nakorn Chiang Mai Hospital

BackgroundHospitalization in individuals with dementia can be associated with negative and unintended outcomes. Research indicates that people with dementia experience more hospital admissions in comparison to individuals without dementia. This study aims to assess the survival time of individuals with dementia who experience unplanned hospitalization and examine the factors that are associated with mortality in this population.MethodsThis retrospective cohort study was conducted using data from older adults with dementia who survived unplanned hospitalizations at Maharaj Nakorn Chiang Mai Hospital between January 1, 2009, and December 31, 2016. The association between factors and mortality were analyzed using a multivariable Cox proportional hazards model.ResultsOne hundred and eighty-one cases were included. The mean age of the study population was 80.07 (SD 7.49) years, and the majority were female (56.91%). The median survival time of the studied cohort was 3.06 years (95% CI 3.14–3.60). The multivariable analysis revealed that older age (aHR = 1.02, 95% CI 1.00-1.05), a diagnosis of mixed-type dementia (aHR = 3.45, 95% CI 1.17–10.14), higher Charlson comorbidity index score (aHR = 1.19, 95% CI 1.04–1.36), higher serum creatinine level (aHR = 1.35, 95% CI 1.10–1.66), insertion of endotracheal tube (aHR = 1.95, 95% CI 1.07–3.54), and readmission within 30 days (aHR = 1.88, 95% CI 1.18–2.98) were associated with an increased risk of mortality.ConclusionsWe identified several notable predictors of mortality. Healthcare providers can use the findings of this study to identify patients who may be at higher risk of mortality and develop targeted interventions which may improve patient outcomes.

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Changes in Nursing Students Image of Dementia after a Virtual Reality Dementia Experience A Text Mining Analysis

Changes in Nursing Students Image of Dementia after a Virtual Reality Dementia Experience A Text Mining Analysis

Applicability of the Self-Evaluation Scale of nursing practices for improving sleep quality among patients with dementia taking sleeping pills to general nurses.

Many patients with dementia experience sleep-related problems. However, there is a lack of clarity regarding nursing practices that can address these issues. Thus, we developed a self-assessment scale for nursing practices to improve sleep quality among patients with dementia taking sleep medication and confirmed its validity and reliability. This study aimed to test the validity and reliability of this scale for adaptability to general nurses and test its applicability. The survey included basic attributes and questionnaire items related to nursing practices to improve sleep quality in patients with dementia taking sleeping pills. Data from 477 participants with no missing values in the survey items were used in the analysis. The self-evaluation scale of nursing practices for improving sleep quality among patients with dementia taking sleeping pills was based on a three-factor model, and confirmatory factor analysis was performed using structural equation modeling. Goodness-of-fit indices were satisfactory, supporting the construct validity of the scale. Cronbach's α coefficients for the total score and the three factors of the self-evaluation scale of nursing practices for improving sleep quality among patients with dementia taking sleeping pills exceeded 0.7. The development of this scale can improve the quality of nursing practice for patients with dementia who take sleeping pills. Moreover, it can serve as evidence for general nurses to participate in drug treatment and can be considered as basic research for appropriate drug treatment in nursing practice.