Providing Dementia Care Research Articles

Dementia Care Among United States Dialysis Providers: A Mixed Methods Study Evaluating Clinician Comfort and Knowledge

Rationale & ObjectiveGiven the high burden of dementia in dialysis patients, the dialysis workforce needs to be prepared to provide high-quality, person-centered dementia care. We explored comfort with and knowledge of dementia among U.S. dialysis care providers. Study DesignWeb-based survey Setting & ParticipantsEmails were sent to National Kidney Foundation and National Association of Nephrology Technicians/Technologists membership listservs (9/26/22-10/22/22). 1121 respondents had complete data for analysis (57% 35-49 years; 62% female; 62%/22% white/Black) [including 81 physicians, 61 advanced practice providers, 230 nurse managers, 260 nurses, 202 social workers, 195 dietitians, and 86 dialysis patient care technicians]. ExposuresProvider role, age, tenure, gender, previous dementia training, awareness of dementia guidance. OutcomesDementia Knowledge (assessed using Dementia Knowledge Assessment Scale (DKAS; score range, 0-25)]. Analytic ApproachCharacteristics of respondents, comfort with dementia care, and dementia knowledge were summarized and tabulated overall and by role. Robust regression was used to obtain coefficients confidence intervals for the associations between characteristics and DKAS scores, adjusting for role and tenure. Free-text responses to an open-ended question about treating patients with dementia or cognitive impairment were analyzed using thematic analysis. ResultsDementia knowledge among U.S. dialysis providers may be limited (overall DKAS score = 17; range, 13-21 across roles), despite most reporting knowing when patients had dementia (97%) and receiving training in dementia care (62%). Further, training may be inadequate: those who reported receiving dementia training had lower DKAS scores than those who reported not receiving training (β=-3.9, 95% CI: -4.4,-3.4). Thematic analysis of open-ended responses suggested that the impact of dementia on dialysis care and management and treatment beyond dialysis care are challenging for providers. LimitationsData were self-reported and limited information was gathered about quality, content, and timing of dementia training received. ConclusionMany U.S. dialysis care providers had suboptimal dementia knowledge, despite reporting being comfortable with providing dementia care and reporting they received prior training. Qualitative findings indicate complexity among providers regarding comfort with and knowledge of treating patients with cognitive impairment. Targeted training for the dialysis workforce in dementia knowledge and best practices for person-centered dementia care is warranted.

Capturing the perspectives of African American informal dementia caregivers: a phenomenological study

ABSTRACT Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers’ experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers’ experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

A Pilot Trial of CRESCENT in a Large Academic Healthcare System: A CaReEcoSystem Primary Care Embedded DemeNtia Treatment

ObjectiveThe prevalence of Alzheimer's Disease (AD) and related dementias is escalating, with substantial societal and economic impact. Existing dementia care is often inadequate due to underdiagnosis, delayed diagnosis, and insufficient resources, especially for caregivers. Behavioral symptoms of dementia further complicate care, contributing to negative outcomes. Collaborative care programs show promise, yet resource-intensive models can be challenging to scale. This study aimed to assess the feasibility of CRESCENT (CaReEcoSystem primary Care Embedded dementia Treatment), an adaptation of the CareEcosystem intervention, providing dementia care training to nurse care managers in a primary care setting. DesignEmbedded pilot cluster randomized controlled study. ParticipantsThe thirty nurse care managers enrolled in the trial had 393 patients with an ICD-10 diagnosis code consistent with dementia on their panels, 206 patients corresponding to the 15 intervention nurses and 187 patients corresponding to the 15 control nurses. MeasurementsPrimary outcome: Feasibility of capturing ED utilization using Medicare claims data and of implementing the intervention in a care management program. Secondary outcomes: ED use and change in caregiver distress (via survey) between baseline and 6-month follow-up using the Neuropsychiatric Inventory Questionnaire (NPI-Q) Distress scale. ResultsWe demonstrated the feasibility of collecting ED visit data through Medicare claims and of implementing the intervention in a busy care management program. In the 6-month follow-up, there were no changes in ED visits postintervention. A nonsignificant 2.7-point greater reduction in caregiver distress among caregivers of PWD in the intervention cohort was observed. ConclusionA dementia care coordination program can be integrated into a care management program. Future trials will explore the effectiveness of CRESCENT in a fully powered clinical trial, aiming to address the rising dementia epidemic and improve dementia-informed care in healthcare systems.

Effects of a dementia educational programme using virtual reality on nurses in an acute care hospital: A pre-post comparative study.

Poor awareness of dementia care by healthcare professionals affects the quality of care for people living with dementia in acute care settings. This study examined the effectiveness of a virtual reality-based educational programme for dementia for nurses working in acute care hospitals in Japan. A dementia education programme for nurses was designed. The programme comprised short movies, virtual reality videos based on the short movies, a lecture, discussions and role-playing based on the experimental learning model. Virtual reality video content was created to promote empathy for people living with dementia through a first-person experience of dementia. The educational programme involved nurses working in an acute care hospital in the Tokyo Metropolitan area. Before and after the programme, we employed structured questionnaires using validated instruments to assess participants' attitudes towards people living with dementia, their intentions of helping behaviour and their confidence in providing dementia care. Seventy-six nurses participated in and completed the pre- and post-tests. The mean age was 34.9 ± 9.2 years, and 90.8% of the participants were female. A paired t-test showed significant before-after improvement in the participants' attitudes towards people living with dementia (41.9 ± 5.1 vs. 44.5 ± 4.8), intentions of helping behaviour towards people living with dementia (10.8 ± 2.5 vs. 12.8 ± 2.1) and confidence in providing dementia care (25.9 ± 6.7 vs. 29.2 ± 6.0). The programme effectively improved nurses' attitudes towards people living with dementia and confidence in providing dementia care in acute care settings. Future research is important to explore the long-term effects of this programme and its effects on actual dementia care. The dementia education programme may promote person-centred care in acute hospitals. Future studies should consider the provision of more flexible programs so that nurses can more easily participate in them.

The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.

2024 Alzheimer's disease facts and figures.

This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non-physician health care professionals. An estimated 6.9 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060, barring the development of medical breakthroughs to prevent or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers' increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community-based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, includingthe absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community-based workers to provide dementia care. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2024 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non-physician health care professionals play in facilitating clinical care and access to community-based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.

The Impact of Dementia on the Psychosocial Well-Being of Informal Caregivers in Asia: A Scoping Review Comparing High-Income and Low–Middle-Income Countries

The need for informal caregiving has become a crucial topic for researchers and policymakers. This review explores the psychosocial impact on caregivers providing dementia care in high-income and low–middle-income Asian countries. A scoping review was undertaken following the Joanna Briggs Institute (JBI) protocol. A systematic search of four databases (PubMed, ProQuest, Medline, and Medline Complete) was conducted. Articles were screened following the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines. Fourteen articles (11 cross-sectional, 1 longitudinal, 1 case-control, and 1 descriptive phenomenological study) were selected for the final analysis. The most frequently reported findings from low–middle-income countries were dementia caregivers working longer hours and experiencing financial issues, poor physical health, and lower life satisfaction, which progressively and collectively affected caregivers’ psychosocial well-being and quality of life. However, the impact was less significant in high-income Asian countries, particularly those where efforts are being made to identify the burdens associated with caring for people with dementia and providing appropriate support. This review demonstrates clear evidence that caring for people with dementia may affect informal caregivers’ quality of life, particularly in low–middle-income Asian countries. Systematic reviews and meta-analyses may be needed to confirm these findings.

Towards inclusiveness in dementia services for black and minoritised communities in the UK

Purpose The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion of black and minoritised groups. The paper will go on to identify the implications for the dementia wellness pathway and make recommendations regarding how services can be more inclusive. Design/methodology/approach This paper examines the policy/practice landscape around dementia care provision and observes if lessons can be learnt to improve health outcomes for people living with dementia from black and minoritised communities. Findings A review of dementia policy demonstrates how opportunities to improve the awareness, diagnosis and post-diagnostic support for minoritised communities are being missed. The outcomes of this mean that individuals are denied vital treatment and support, which could enhance quality of life and delay the progression of dementia. Practical implications The authors’ premise is that not meeting the dementia support needs of less-heard communities has negative financial as well as social and health-related outcomes and has wider resonance and implications for all stages of the dementia wellness pathway. Moreover, there is a legal responsibility for public services to provide culturally sensitive, responsive, appropriate and available care, to all people, without discrimination. Originality/value This paper offers a valuable review of policy and practice around dementia care in the UK and makes recommendations to improve health outcomes for people living with dementia from black and minoritised communities.

Knowledge, attitudes and self-confidence with skills required for providing dementia care in physicians at primary healthcare settings in Vietnam

BackgroundDementia is a global public health priority. The World Health Organization adopted a Global Action Plan on Dementia, with dementia awareness a priority. This study examined the knowledge, attitudes, and self-confidence with skills required for providing dementia care among primary health care providers in Vietnam.MethodsA cross-sectional study was conducted with 405 primary health care providers who worked at commune health stations and district health centers in eight provinces across Vietnam.ResultsThe results showed that primary health care providers had poor knowledge and little confidence but more positive attitudes toward dementia care and management.ConclusionsThe results suggest the training needs for building capacity amongst primary health care providers, which will be critical as Vietnam’s population ages.

Life story templates in dementia care: Ambiguous direction and purpose.

The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template. Using a constructionist approach, this study will (1) chart what versions of a person's life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions. The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient with dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use. Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use.

Development of the Dardashna Checklist for Identifying Triggers of Behavioral Change in Individuals With Dementia: A Qualitative Study.

The purpose of the current qualitative study was to describe the development of the Dardashna Checklist to clinically identify behavior change triggers in individuals with dementia. Semi-structured, in-depth, face-to-face interviews were conducted with four physicians and four experienced caregivers involved in the care of individuals with dementia. From analysis of participants' interviews, themes extracted included Triggers of Behavioral Change in Individuals With Dementia and Types of Behavioral Changes, using the checklist structure as a guide. The information gathered by this checklist conveys important messages to experienced physicians or caregivers who want to help less experienced caregivers or individuals with dementia. In this case, physicians' prescriptions and the responses of other experienced caregivers will be more targeted and useful. This checklist will help facilitate clinical care decisions, improve quality of life, reduce expenses and side effects of medications, and improve communication among persons with dementia, their caregivers, and health care providers. [Journal of Gerontological Nursing, 50(1), 37-46.].

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.

NURSING HOME WORKFORCE EDUCATION: DOES ONE SIZE FIT ALL? EVIDENCE FROM THE CHATO NATIONAL TRIAL

Abstract Educating the nursing home workforce to provide quality dementia care is a national priority. Staff education is usually provided to all staff in communities that vary in size, location, ownership, and resources with little consideration for diversity. To evaluate suitability for diverse staff, we compared learning outcomes for White, non-Hispanic staff and staff of diverse races and ethnicities who completed CHATO in year one. White non-Hispanic staff (N=402) scored higher on knowledge assessments than staff self-reporting other races and ethnicities (N=201) at baseline (mean=57.1% vs. 49.1%, p<.001). Both groups improved on post-assessment (by 19.0 and 23.1 percentage points, respectively, p<.001), Communication ratings indicated that at baseline White, non-Hispanic staff were more knowledgeable about effective (p<.001), appropriate (p=.008), and person-centered communication (p<.001) than diverse staff; while the latter recognized elderspeak better (p=.002). Both groups improved their communication ratings post-CHATO (p from .001 to <.001). While confidence in providing dementia care was similar between groups at baseline (p=.754), it improved only for White, non-Hispanic staff (p<.001). Intention to use learned skills in practice was higher for staff in the diverse group (p<.001). Diverse staff rated their satisfaction with the intervention lower (p <.001), suggesting that it was not tailored to their needs. These findings support the value of CHATO in increasing communication knowledge among diverse NH staff. However, lower satisfaction suggests the need to adapt CHATO to be more inclusive and culturally appropriate. Tailoring education may increase impact on outcomes and overcome disparities in dementia care common in NHs serving diverse populations.

ENHANCED SUPPORT FOR CHINESE AND KOREAN AMERICAN DEMENTIA CAREGIVERS: INSIGHT FROM SERVICE PROVIDERS

Abstract As members of two large Asian immigrant populations in the U.S., Korean and Chinese American family caregivers of persons with dementia (PWD) have unique challenges impacted by their cultural background. Many of them prefer to and are relying on social services providers who speak the same language as they do for support and assistance. As part of the project to inform the cultural adaptation of NYU Caregiver Intervention-Enhanced Support (NYUCI-ES) program for Chinese and Korean American caregivers with multiple chronic conditions, we explored the perspectives of 13 Chinese and 12 Korean services providers (physicians and social service staff). During focus group discussions, services providers shared their perspectives on care challenges facing these populations, including challenges in initiating advanced care planning, family conflict in decision making and caregiving, insufficient community resources, staffing shortage associated with the pandemic and some care aides’ stigmatic beliefs about providing dementia care. We identified nuances in the following aspects: utilization of home health aides’ help, attitudes towards diagnosis and education, approaches to selfcare, preferences for engagement settings, trust-building, and family involvement. For instance, Korean services providers highlighted Korean caregivers’ strong preference for home health aides of the same gender as PWD and having individual rather than group session to learn about dementia. What we found from services providers largely echoed our findings from family caregivers but also provided unique insights from their work experiences. These findings will inform cultural adaptation of the content of the NYUCI to improve its applicability to Chinese and Korean American caregivers.

FAMILY CAREGIVERS’ REFLECTIONS ON FAMILY SUPPORT AND PREPAREDNESS FOR END-OF-LIFE CAREGIVING

Abstract Family caregivers often report not having the knowledge or skills to provide care needed at their care receiver’s end of life (EoL), leaving them vulnerable to emotional, psychological, physical, and financial stress. These stressors may be due to increasingly complex caregiving responsibilities, difficult medical decisions, and anticipatory grief. Studies have also found a higher incidence of adverse effects among dementia caregivers. Few studies have examined how family support is associated with preparedness for EoL caregiving. Thus, the purpose of this study was to explore family caregivers’ feelings of preparedness and family-member support for EoL caregiving, comparing responses between dementia care providers with all other caregivers. A sample of family caregivers were recruited to complete an online, self-report survey. Open-ended questions were included to explore caregivers’ feelings of preparedness and family support. Of all participants, 206 family caregivers responded to the open-ended questions. Nearly 40% (n=79) of these caregivers were providing care to a family member with Alzheimer’s disease or related dementia. Qualitative methods were used to analyze data, develop a coding scheme, and identify themes. Findings suggest that most family caregivers are providing care without adequate help, support, or communication from other family members. This lack of support seems to leave dementia caregivers feeling less prepared and more frustrated than other caregivers. Our findings highlight the importance of family communication about advance care planning and caregiving responsibilities to promote family caregiver preparedness and well-being, and effective care and quality of life for an individual at the end of their life.

PRELIMINARY FEASIBILITY, UTILITY, AND ACCEPTABILITY OF THE TBI-AD/ADRD CAREGIVER SUPPORT INTERVENTION (TACSI)

Abstract Research has established that dementia care partners may encounter socio-emotional and physical health concerns as a consequence of providing dementia care. Similarly, care partners for people living with Traumatic Brain Injury (TBI) often experience a range of stressors and negative mental health outcomes due to their care demands. This study aims to support the unique subset of family care partners facing the challenge of caring for relatives who have both diseases, Alzheimer’s Disease/Alzheimer’s Disease related dementia (AD/ADRD) and a history of TBI. Phase I of this study focused on the design and subsequent refinement of the TBI-AD/ADRD Caregiver Support Intervention (TACSI). TACSI is a six-session telehealth intervention providing tailored psychosocial and psychoeducational coaching. Session topics include education on TBI and dementia, stress management, lifestyle planning, and communication skills. In partnership with the Minneapolis VA and the Mayo Clinic-Rochester, we enrolled 15 care partners for Phase I. Mixed methods data from 3-month follow-up surveys and qualitative data from post-intervention interviews established the feasibility, utility, and acceptance of TACSI. Care partners found the program valuable and would recommend it to others. They reported that TACSI helped with their stress management. Some participants shared that TACSI would provide greater benefit to newer caregivers needing more education on the diseases and/or caregiving. Phase I feedback will be applied to improve TACSI content and delivery for the Phase II randomized controlled trial evaluation. TACSI Phase I utility, acceptance, and feasibility outcomes will be highlighted as well as next steps for evaluation.

PROVIDING DEMENTIA CARE ACROSS LOW-RESOURCE COMMUNITIES

Abstract The growing number of persons living with dementia (PLWD) require ongoing care and supportive services, but dementia care access and quality are more limited in communities with fewer health resources and these limitations are exacerbated by current dementia care workforce shortages. Across low-resource communities—including poorer urban and rural settings—health resources tend to be limited and PLWD are predominantly socioeconomically disadvantaged and have few personal financial resources to contribute to care provision. Although there is growing evidence about the consequences of care inequities for PLWD, less is known about key issues and opportunities for improving dementia care in low-resource communities. This symposium features presentations that highlight unique social and economic challenges and opportunities for providing dementia care in low-resource communities. The first presenter reports results from a community-based, participatory research study in four long-term care settings in federally designated medically underserved areas (two rural, two urban) that highlights strategies used by long-term care providers to recruit and retain dementia care staff and describes their perspectives on quality dementia care. The second presenter shares findings from an innovative pilot program of case management services to address challenges of PLWD who are living alone in the community through collaboration with local paramedicine services. The third presenter provides an overview of the Person-Centered Options Counseling Certification program with a discussion on strategies for implementing person-centered dementia care initiatives in low-resource communities. This symposium reveals complexities in providing care for PLWD in diverse low-resource communities and generates directions for addressing dementia care inequities.

AN EDUCATIONAL PROGRAM IN ASSISTED LIVING TO INCREASE STAFF SELF-EFFICACY IN PROVISION OF DEMENTIA PALLIATIVE CARE

Abstract Advance care planning among persons with dementia, their family members and staff in assisted living (AL) communities can facilitate meeting care preferences. In a recent NIH Stage 1a feasibility cluster randomized trial in AL communities (N=118 residents with dementia, 23 staff; k=10 ALs). The Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP) intervention showed an increase in documentation of ACP discussions (e.g., completion of advance directives, having goals of care discussions with family) in the treatment group from 12% to 51% compared to control group (8% to 23%) from baseline to six-months (effect size 0.86, Cohen’s d statistic). The current study is an NIH Stage 1b pilot using the same sample to test staff self-efficacy as a mechanism and if staff self-efficacy mediates the effects of increased documentation of ACP discussions. The measure of staff self-efficacy includes two self-reported survey items at pre- and post-intervention (baseline and one-month) that asks them how much they agree with their ability to provide care for terminally ill persons and terminally ill persons with dementia (completely agree, somewhat agree, completely disagree). Descriptive results indicate a larger increase for the treatment AL staff from baseline to one month for the percentage who completely agreed with both items. For the item specific to providing care for terminally ill persons with dementia, the treatment group was 47% baseline to 84.6% one-month compared to 66% baseline and 50% control group. Results for mediation between staff-self efficacy and ACP will be discussed.

THE IMPACT OF ADS CLOSURES DURING COVID-19 ON PERSONS WITH DEMENTIA AND THEIR CAREGIVER

Abstract Due to the COVID-19 pandemic, many Adult Day Services (ADS), community-based programs that provide supervision, social support, and/or assistance with daily activities for clients, either temporarily or permanently terminated in-person services. Such closures left vulnerable older adults with dementia without vital services. To date, there is limited information exploring the nuances and impact of ADS closures on individuals with dementia and their care providers. To address this knowledge gap, data were drawn from an interview-based NIH-funded protocol that evaluated the experiences of informal and formal dementia care providers during the height of the COVID-19 pandemic. Data were filtered by the subsample (n=25) who provided care to an individual with dementia who participated in an ADS program. Analysis focused on all data coded “ADS,” which encompassed discussion pertaining to adult day programming. Content analyses indicated a range of themes including 1.accelerated cognitive and psychological decline, 2.engaging is precarious conduct, 3.increased caregiver burden (financial, physical, emotional), and 4.premature transitions to institutional care settings. Despite well intentioned efforts to shield the older adult population from harmful exposures during the height of the pandemic, ADS closures (both permanent and temporary) negatively impacted the health and welfare of an already vulnerable population and their caregivers. Findings add to the ongoing literature suggesting ADS and analogous supports should be classified as essential services and not face closure mandates during similar public health emergencies.

Challenges for the Practitioner in using Biomarkers and Genetics in Clinical Diagnosis and Treatment of Alzheimer's Disease

The underdiagnoses of cognitive impairment and dementia are well documented and when the diagnosis is made it is often late in the disease course. These facts have serious consequences highlighted by the recent approval of the monoclonal antibodies for amyloid treatment for Alzheimer’s disease. The slow uptake and even serious pushback from many stakeholders may reflect their equipoise about early and accurate detection of dementia let alone its specific etiology. The Genetic marker, Apolipoprotein ε4, good clinical acumen, and biomarkers for amyloid and tau, can provide confidence in an Alzheimer’s disease diagnosis even at the mildest stages. Low utilization of these biomarkers highlights the limited knowledge of dementia care providers around mechanisms of disease and pharmacologic action. The use of biomarkers can provide confidence in clinical assessment and diagnosis, selection of agents, and assessment of safety. Disease staging using both clinical evaluation and biomarkers may soon be required to select interventions fully. Designing trials that use recognized methods for subject selection and include a wider range of outcomes, measures of patient satisfaction, and costs may improve the utilization of approved medications. Additionally, education about targeted pathologies, molecular diagnoses, and measurement of benefits can be developed for both the provider and the patient population. The presentation will highlight challenges for the practitioner in translating the clinical trial results to real-life patient populations.