Interventions In Dementia Care Research Articles

Prescription of Nonpharmacologic Interventions in Memory Clinics: Data From the Clinical Pathway for Alzheimer's Disease in China (CPAD) Study

ObjectivesNonpharmacologic interventions are recommended to improve outcomes in dementia. Little is known about their prescription in practice, especially in non-Western populations. We investigated individual- and institution-level characteristics associated with nonpharmacologic interventions prescription in China. DesignA multicenter observational study. Setting and ParticipantsThis study used cross-sectional data from 889 community-dwelling outpatients living with dementia ≥45 years of age from a multicenter registry of 28 memory clinics in China. MethodsPrescription records of nonpharmacologic interventions, carer and clinic characteristics, and reasons for declining interventions were collected. Multilevel logistic regression was used to identify factors associated with the prescription. ResultsNonpharmacologic interventions were prescribed in 323 people (36.3%) with mild cognitive impairment or dementia. Cognitive activities and carer training/support were the most prescribed interventions. Multilevel logistic regression showed that 73% of the variance in prescription was attributed to institutional characteristics of the memory clinic. Greater caregiving gain (odds ratio [OR], 1.05; 95% CI, 1.02-1.09), lower burden (OR, 0.97; 95% CI, 0.95-1.00), worse carer-perceived dyad relationship (OR, 0.83; 95% CI, 0.70-0.99), and family history of dementia (OR, 2.08; 95% CI, 1.19-3.65) were individual-level factors associated with prescription. Among 440 people considered having a need but received no prescription, declined by user/carer was the main reason for not prescribing (70.7%). Skepticism about effectiveness by physicians/carers and carers being unable or lacking resources to use the interventions were the common reasons given. Conclusions and ImplicationsA relatively low prescription rate of nonpharmacologic interventions is related to both individual- and institution-level factors. Carer support and education, instrumental support, and prescription guidelines across specialties and sites are possible strategies to improve access to nonpharmacologic interventions in dementia care.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

Effectiveness of the online-based comprehensive cognitive training application, Smart Brain, for community-dwelling older adults with dementia: a randomized controlled trial.

The fourth industrial revolution has brought about developments in information and communication technologies for interventions in older adults with dementia. Currently, most interventions focus on single interventions. However, community-dwelling older adults with dementia require comprehensive cognitive interventions, and clinical studies analyzing the effects of comprehensive interventions based on randomized controlled trials are lacking. The aim of the study was to examine the effects of an information and communication technology-based comprehensive cognitive training program, Smart Brain, on multi-domain function among community-dwelling older adults with dementia. This was a two-group, randomized, controlled trial. This study was conducted at participant's home. We analyzed older adults with dementia. Participants were randomly allocated to either the intervention group (N.=30) or the control group (N.=30). Older adults with dementia in the intervention group received 8 weeks of Smart Brain comprehensive cognitive training using a tablet, whereas the control group received a similar tablet but without the training. We measured the outcomes at baseline, and at 4 and 8 weeks. Cognitive function, depression, quality of life, balance confidence, physical ability, nutrition, and caregiver burden were compared between groups. In the intervention group, cognitive function statistically increased from baseline to both week 4 (2.03; 95% CI 1.26 to 2.81) and week 8 (2.70; 95% CI 1.76 to 3.64). Depression was statistically different from week 0 to week 8 (-1.67, 95% CI -2.85 to -0.48). Physical ability statistically increased from baseline to both week 4 (-0.85; 95% CI 1.49 to -0.20) and week 8 (-1.44; 95% CI -2.29 to -0.59). Nutrition statistically increased from baseline to both week 4 (0.67; 95% CI 0.05 to 1.28) and week 8 (1.10; 95% CI 0.36 to 1.84). Smart Brain significantly improved cognitive function, reduced depression, and enhanced physical and nutritional status in older adults with dementia. This demonstrates its potential as an effective non-pharmacological intervention in community-based dementia care. Smart Brain's personalized approach, which integrates user-specific preferences and expert guidance, enhances engagement and goal achievement in dementia care. This enhances self-esteem and clinical outcomes, demonstrates the application's potential to innovate rehabilitation practices.

Sex Differences in Healthcare Utilization in Persons Living with Dementia Between 2000 and 2017: A Population-Based Study in Quebec, Canada.

Objectives: Describe sex differences in healthcare utilization and mortality in persons with new dementia in Quebec, Canada. Methods: We conducted a repeated cohort study from 2000 to 2017 using health administrative databases. Community-dwelling persons aged 65+ with a new diagnosis of dementia were included. We measured 23 indicators of healthcare use across five care settings: ambulatory care, pharmacological care, acute hospital care, long-term care, and mortality. Clinically meaningful sex differences in age-standardized rates were determined graphically through expert consultations. Results: Women with dementia had higher rates of ambulatory care and pharmacological care, while men with dementia had higher acute hospital care, admission to long-term care, and mortality. There was no meaningful difference in visits to cognition specialists, antipsychotic prescriptions, and hospital death. Discussion: Men and women with dementia demonstrate differences in healthcare utilization and mortality. Addressing these differences will inform decision-makers, care providers and researchers and guide more equitable policy and interventions in dementia care.

Self-report instruments measuring aspects of self for people living with dementia: A systematic literature review of psychosocial interventions.

A positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in evaluating psychosocial interventions for people living with dementia and to explore the effectiveness of these interventions in terms of positive outcomes related to aspects of self. A systematic search of the literature using five electronic databases and one register (CENTRAL) was conducted. A narrative synthesis and methodological quality assessment was completed for the included studies. A total of 24 studies were included in the review. Seven aspects of self were measured using a range of self-report instruments, many of which have not been validated for dementia. Aspects of self were; self-esteem, self-efficacy, self-compassion, self-growth, self-acceptance, self-management, and self-identity. Studies included a variety of interventions; however, the effectiveness of these interventions for these aspects of self was mixed. There is some evidence that psychosocial interventions improve specific aspects of self in dementia but further research to improve this evidence base is needed. Future research should also investigate and confirm the validity and reliability of existing self-report instruments that aim to measure aspects of self in dementia. Limitations and implications of the review are discussed.

Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review.

The review aimed to identify and describe dementia care interventions and programs that are culturally tailored to support racial and ethnic minority informal caregivers of community-dwelling people living with dementia (PLWD) to identify gaps in need. Culturally targeted interventions to support vulnerable minority informal caregivers are important in addressing the care needs of PLWD and eliminating racial and ethnic dementia disparities. Nevertheless, little is known about the existing interventions and programs that are culturally tailored to support racial and ethnic minority groups, in particular, African-American caregivers in the care of their family members. We conducted a Scoping review, searching eight databases including MEDLINE, EMBASE, APA PsycINFO, CINAHL, PUBMED, Scopus, and Web of Science between January 2012 and June 2022. Our search identified 2669 records, of which 17 articles were included in the analysis. The review addressed how these interventions have been developed to meet the needs and preferences of minority caregivers, particularly, African-American caregivers in culturally responsive ways. Findings show that culturally tailored interventions have the potential to improve the caregiving ability of informal caregivers. Supporting informal caregivers appears to be an effective strategy often improving the well-being of PLWD and reducing caregiver burden. The review demonstrates the paucity and diversity of research on culturally tailored dementia interventions to reduce racial and ethnic disparities. This scoping review identified gaps in the existing literature and aims for future work to develop and investigate cultural tailoring of interventions.

Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial

BackgroundApproximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136–46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers.MethodsWe will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being.DiscussionTesting the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices.Trial registrationThis trial was registered with ClinicalTrials.gov NCT05849259 in May 2023.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

Facilitators and barriers to implementing a specialized care unit for persons with cognitive impairment in an acute geriatric hospital: a process evaluation

BackgroundImplementing dementia care interventions in an acute hospital poses multiple challenges. To understand factors influencing the implementation, in-depth knowledge about specific facilitators and barriers is necessary. The aim of this study was to identify facilitators and barriers to implementing an interprofessional, multicomponent intervention of a specialized unit for persons with cognitive impairment in an acute geriatric hospital.MethodsWe conducted a process evaluation as part of a participatory action research study. For data collection, semi-structured individual interviews with fifteen professionals involved in the implementation of the specialized unit. We further conducted two focus groups with twelve professionals working on other units of the geriatric hospital. We performed a qualitative content analysis following Kuckartz’s content-structuring analysis scheme.ResultsWe identified the following barriers to implementing the specialized unit: uncontrollable contextual changes (e.g., COVID-19 pandemic), staff turnover in key functions, high fluctuation in the nursing team, traditional work culture, entrenched structures, inflexible and efficiency-oriented processes, monoprofessional attitude, neglect of project-related communication, and fragmentation of interprofessional cooperation. An established culture of interprofessionalism, an interprofessionally composed project group, cooperation with a research partner, as well as the project groups’ motivation and competence of managing change facilitated the implementation.ConclusionsThe implementation faced numerous barriers that can be described using the key constructs of the i-PARIHS framework: context, recipients, innovation, and facilitation. Overcoming these barriers requires an organizational development approach, extended project duration and increased process orientation. Furthermore, strategically planned, precise and ongoing communication towards all persons involved seems crucial. Differences between the work cultures of the professions involved deserve particular attention with regard to project-related roles and processes.

HIDDEN BARRIERS TO ENGAGING HOME- AND COMMUNITY-BASED SERVICES IN DEMENTIA CARE RESEARCH

Abstract The high prevalence of dementia in the United States has resulted in a reliance on home-and community-based services (HCBS) to assist in the provision of care for community-dwelling persons living with dementia. Partnering with HCBS organizations, like Adult Day Services (ADS), is beneficial to disseminating evidence-based dementia care interventions as it is an existing service that can be leveraged to foster relationships between research staff and clients. While benefits exist, challenges in identifying community-partner organization, ethical approval, and community-partner staffing can be unintended barriers. Using the ADS Plus Program as a case-study, this presentation will detail hidden barriers in engaging HCBS partnerships into dementia care research. Specifically, we will discuss barriers to 1) developing relationships to implement a multi-site national-trial, 2) high touch points necessary to engage sites from underrepresented populations, 3) institutional review board requirements (e.g. CiTi training, Federal Wide Assurance Forms), and 4) staff readiness to participate in research. We also offer recommendations based on lessons learned from the ADS Plus Program to enhance the pipeline from engagement with HCBS to participate in research to implementing an evidence-based interventions. Lessons learned from the ADS Plus Program demonstrates that changes are needed to improve the efficiency of the pipeline from community-based participation into dementia care research and implementation of evidence-based interventions.

The Effectiveness of Reminiscence Therapy in Improving Cognitive Functions And Psychological Wellbeing in Older Adults With Early Dementia ‐ The Randomized Control Trial

AbstractBackgroundReminiscence therapy (RT) is a trending type of non‐pharmacological intervention in dementia care. RT is using life histories recalling and re‐experiencing the life events in older people in order to improve their psychological well‐being through the volitional or non‐volitional process of recollecting memories from their past.MethodParticipants' selection inclusion criteria are: (a) aged 65 or above, (b) early stage of dementia that was screened by the Montreal Cognitive Assessment (MoCA) with scoring of 17‐19, and (c) can read written instruction and consent. Participants were randomly assigned by block randomization with randomized block procedure. The participants attended eight group sessions, with each session lasting for 60 minutes. Sessions were administered two times a week over a 4‐week period. Participants' depressive symptoms were evaluated by Geriatric Depression Scale (GDS), Subjective well‐being (the cognitive components) was measured by Satisfaction With Life Scale (SWLS), mood change as measured by Visual Analogue Mood Scale (VAMS). All these evaluation were conducted baseline, mid‐way evaluation and post‐evaluation by a registered Occupational Therapist.ResultForty older people (29 male and 11 female) were eligible for the study. There was significant difference on depressive symptoms (p = .02, t = ‐2.38), mood change (p = .03, t = ‐3.38), but marginally significant in subjective well‐being (p = .05, t = ‐1.03) between intervention and control group. Further analyses were conducted whether depressive symptoms and mood change effect individuals' subjective well‐being. A two‐way ANOVA revealed that there was not a statistically significant interaction between the effects of depressive symptoms and mood change (F(3, 16) = 1.242, p = .311). Simple main effects analysis showed that depressive symptoms did not have a statistically significant effect on subjective well‐being (p = .975). Simple main effects analysis showed that mood change did have a statistically significant effect on subjective well‐being (p &lt; .000).ConclusionThe findings of this study affirmed the benefit of RT to older people with early stage of dementia through improving depressive symptoms, mood and marginally on their subjective well‐being. The research data available support the inclusion of a structured RT as a part of the routine care given to older people. There are some limitations of our study.

Emerging Strategies for Developing Highly Engaging Dementia Care Intervention for Paid Care Workers in Long‐Term Care (LTC) Settings

AbstractBackgroundThere is widespread agreement about the need for strengthening the dementia‐capable workforce to increase the accessibility of online dementia care training programs for paid care workers (PCW) in LTC. Through three NIH‐funded research projects, we are forming an approach to the development of digital dementia training interventions based on two main strategies: a) improving ‘engage‐ability’ by using an engagement design centering on the concepts of motivation (key needs of the user), satisfaction (positive experience with the intervention), and interactivity (connection from one session to another); and b) integrating domain‐specific employee training with a generic employee wellness program.MethodStudy 1 evaluates a self‐directed learning (SDL) digital dementia care training intervention to increase ‘engage‐ability’ by addressing PCWs’ needs for improved knowledge and competence for caregiving while maintaining a sense of control in the learning process (motivation); by enhancing the ease of use through scenario‐based audiovisual modules (satisfaction); and, by using post‐session quizzes and pre‐session reminder messages (interactivity). Study 2 developed a worksite digital health risk assessment combined with a wellness improvement program that enabled a workplace counselor to deliver health education materials to increase healthy lifestyle behaviors in preretirement adult workers aged 55 and above. Study 3 combines the SDL dementia care training with the wellness program for PCWs in LTC settings in order to achieve high ‘engage‐ability’ and acceptability of the intervention.ResultA pre‐post evaluation of the SDL program (Study 1) revealed a significant reduction in stress and improved self‐efficacy in providing dementia care among PCWs (Study 1). Formative research demonstrated moderate usability and acceptability from the pre‐retirement workers who participated in Study 2. In Study 3, focus groups with PCWs and managers from LTC organizations showed high endorsement of integrated dementia care training and wellness programs with organizational support for the delivery of the training intervention for PCWs in LTC settings.ConclusionA successful digital training program for PCWs providing dementia care in LTC systems requires an integration of dementia‐specific training and the tools for wellness critical for supporting PCWs’ overall well‐being while securing support from the LTC organizations for PCW participation in the program.

Moving Pictures India: Co‐designing a digital dementia care intervention for low and middle income countries

AbstractBackgroundDespite the rapid proliferation of smartphones in low and middle‐income countries (LMICs), few studies have explored how to harness this technology to improve dementia care. Using a case‐study from India, where 830 million people are smartphone users, we describe the co‐design of a fully digitalised dementia care intervention for family carers in a resource‐poor setting.MethodQualitative in‐depth video interviews were conducted in English, Hindi, and/or Kannada with 19 family carers and 25 health providers in Bangalore, India. Data were thematically analysed, then presented to 10 of the interview participants in a co‐design workshop, where they were asked to storyboard the data to form the basis of nine short films on dementia care.ResultWorkshop participants developed storyboards for nine films: signs of dementia and the diagnostic process; first steps and treatment; managing difficult behaviours; working with doctors and going to hospital; managing pain; eating, nutrition, and dental care; managing hygiene and incontinence; later stages and palliative care; and self‐care for carers. A proposed film on care pathways was deemed too broad and discarded. Instead, carers wanted greater specificity on routine, sleep, and pleasant activities as well as legal and ethical issues in dementia care. Overall, 11 films were proposed. Carers used the parent‐child analogy to describe their relationship with the person with dementia, utilised various surveillance technologies to keep their relative safe, and expressed differing views about institutionalised care. These cultural nuances and systemic issues associated with care will be reflected in the films. Once produced, the films will be member checked with all interview participants and community members for cultural salience and relevance before progressing to a full digital trial to evaluate its impact on reducing carer burden and improving carer’s mood and quality of life.ConclusionThe films will be available on a mobile‐optimised website, freely accessible, and bypass barriers of distance, being time‐poor, and semi‐literate. By co‐producing resources in country, this model is scalable, based on knowledge of local resources and burden of disease, and relevant to LMICs where substantive increases in dementia prevalence are anticipated to occur.

Person-centred caregiver singing for people living with dementia in South Africa: A mixed methods evaluation of acceptability, feasibility, and professional caregivers' experiences.

Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing. This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa. A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability. Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable. Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector. Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research.

Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

The Case for Conducting Pragmatic Dementia Care Trials in Medicaid Home and Community-Based Service Settings

Medicaid-funded home and community-based services (HCBSs) reach large numbers of individuals living with dementia who would otherwise reside in nursing homes with Medicaid funding. Medicaid HCBSs also often augment care provided by family and other informal caregivers to individuals living with dementia. Although Medicaid-funded HCBSs are offered in most states in lieu of nursing home care, they have been largely overlooked as health care system partners for implementation and testing of evidence-based dementia care interventions using embedded pragmatic clinical trial (ePCT) designs. In this article, we make the case for the importance of Medicaid-funded HCBSs as dementia care ePCT partners because of the volume of vulnerable clients with dementia served and the potential positive impacts that evidence-based dementia care programs can have on clients and their informal caregivers. This article first characterizes the Medicaid HCBS setting in terms of populations served and organizational arrangements across states. We then characterize strengths and potential limitations presented by Medicaid HCBSs as settings within which to implement dementia care ePCTs, using as a conceptual framework the Pragmatic-Explanatory Continuum Indicator Summary (PRECIS-2) tool and its domains. We draw on our experiences implementing the Care of Persons with Dementia in their Environments (COPE) program in a statewide Medicaid HCBS setting to highlight how these potential ePCT partners can help optimize pragmatic approaches to several PRECIS-2 domains. We found that partners are especially effective in implementing pragmatic ways to determine eligibility for evidence-based dementia care programs; assist with recruitment of eligible individuals; incorporate dementia care interventions into the range of existing HCBSs; and track outcomes relevant to persons living with dementia, caregivers, HCBS providers, and Medicaid insurance stakeholders. We conclude with recommendations for researchers, potential ePCT partners, and policymakers to help facilitate the growth of dementia care ePCTs in Medicaid HCBS settings across the United States.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing

BackgroundInterventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner.MethodsCross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction.DiscussionIn the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful.Trial registrationThe CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Preparing for pragmatic trials in dementia care: Health equity considerations for nonpharmacological interventions.

Inequities with regard to brain health, economic costs, and the evidence base for dementia care continue. Achieving health equity in dementia care requires rigorous efforts that ensure disproportionately affected populations participate fully in-and benefit from-clinical research. Embedding-proven interventions under real-world conditions and within existing healthcare systems have the potential to examine the effectiveness of an intervention, improve dementia care, and leverage the use of existing resources. Developing embedded pragmatic controlled trials (ePCT) research designs for nonpharmacological dementia care interventions involves a plethora of a priori assumptions and decisions. Although frameworks exist to determine whether interventions are "ready" for ePCT, there is no heuristic to assess health equity-readiness. We discuss health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk, and alignment. Future discussions regarding health equity considerations across other domains are needed.

Using Hybrid Effectiveness Studies to Facilitate Implementation in Community-Based Settings: Three Case Studies in Dementia Care Research

The pipeline from discovery to testing and then implementing evidence-based innovations in real-world contexts may take 2 decades or more to achieve. Implementation science innovations, such as hybrid studies that combine effectiveness and implementation research questions, may help to bridge the chasm between intervention testing and implementation in dementia care. This paper describes hybrid effectiveness studies and presents 3 examples of dementia care interventions conducted in various community-based settings. Studies that focus on outcomes and implementation processes simultaneously may result in a truncated and more efficient implementation pipeline, thereby providing older persons, their families, health care providers, and communities with the best evidence to improve quality of life and care more rapidly. We offer post-acute and long-term care researchers considerations related to study design, sampling, data collection, and analysis that they can apply to their own dementia and other chronic disease care investigations.

Intersection of multiple factors shape Korean American caregiver experience in dementia caregiving

Background and Objectives Studies have shown that cultural norms such as filial responsibility and familism operate in the Korean American caregiving context. The purpose of our study is to understand the practice of Korean American caregivers who provide care to a family member living with dementia and their dementia care support needs. Materials and Methods We conducted 2 focus groups and individual semi-structured interviews with a total of 20 Korean American caregivers. We used inductive thematic analysis to guide coding and generation of themes. Results Three themes were identified; 1) intersectionality in the Korean American caregiver experience, 2) complex family dynamics, and 3) dementia care barriers and caregiver support needs. Within the dyadic relationship and the family, cultural identity, generational, acculturational, and language factors shaped the caregiver experience. The need to navigate bicultural norms could lead to tensions but also provide opportunity for caregivers to consider self-care and use external supports to decrease the work of caregiving. Family was the unit of caregiving and caregiving was divided among family members based on acculturation and language fluency. Caregivers desired both medical information combined with knowledge that experienced lay support could provide. Support that reflects their cultural context was valued. Discussion Findings suggest the importance of understanding the diversity of response to strong elder care norms among Korean American caregivers and the intersection of multiple factors that influence their caregiving experience. Integrating acculturation and generational assessments may be useful as a way to tailor interventions to optimize engagement in dementia care interventions.