And Related Dementias Research Articles

Preserving the self with artificial intelligence using VIPCare-a virtual interaction program for dementia caregivers.

Assistive technology is increasingly used to support the physical needs of differently abled persons but has yet to make inroads on support for cognitive or psychological issues. This gap is an opportunity to address another-the lack of contribution from theoretical social science that can provide insights into problems that cannot be seen. Using Affect Control Theory (ACT), the current project seeks to close that gap with an artificially intelligent application to improve interaction and affect for people with Alzheimer's Disease and Related Dementias (ADRD). Using sociological theory, it models interactions with persons with ADRD based on self-sentiments, rather than cognitive memory, and informs a cellphone-based assistive tool called VIPCare for supporting caregivers. Staff focus groups and interviews with family members of persons with ADRD in a long-term residential care facility collected residents' daily needs and personal histories. Using ACT's evaluation, potency, and activity dimensions, researchers used these data to formulate a self-sentiment profile for each resident and programmed that profile into the VIPCare application. VIPCare used that profile to simulate affectively intelligent social interactions with each unique resident that reduce deflection from established sentiments and, thus, negative emotions. We report on the data collection to design the application, develop self-sentiment profiles for the resident, and generate assistive technology that applies a sociological theory of affect to real world management of interaction, emotion, and mental health. By reducing trial and error in learning to engage people with dementia, this tool has potential to smooth interaction and improve wellbeing for a population vulnerable to distress.

Features of the Physical and Social Neighborhood Environment and Neighborhood-Level Alzheimer's Disease and Related Dementia in South Carolina.

Studies are increasingly examining the relationship between the neighborhood environment and cognitive decline; yet, few have investigated associations between multiple neighborhood features and Alzheimer's disease and related dementias (ADRD). We investigated the relationship between neighborhood features and ADRD cumulative incidence from 2010 to 2014 in the South Carolina Alzheimer's Disease Registry (SCADR). Diagnosed ADRD cases of age were ascertained from the SCADR by ZIP code and census tract. Neighborhood features from multiple secondary sources included poverty, air pollution [particulate matter with a diameter of 2.5 micrometers or less ()], and rurality at the census-tract level and access to healthy food, recreation facilities, and diabetes screening at the county level. In addition to using Poisson generalized linear regression to estimate ADRD incident rate ratios (IRR) with 95% confidence intervals (CIs), we applied integrated nested Laplace approximations and stochastic partial differential equations (INLA-SPDE) to address disparate spatial scales. We estimated associations between neighborhood features and ADRD cumulative incidence. The average annual ADRD cumulative incidence was 690 per 100,000 people per census tract (95% CI: 660, 710). The analysis was limited to 98% of census tracts with a population old (i.e., 1,081 of 1,103). The average percent of families living below the federal poverty line per census tract was 18.8%, and of census tracts were considered rural. The average percent of households with limited access to healthy food was 6.4%. In adjusted models, every ) increase of was associated with 65% higher ADRD cumulative incidence (; 95% CI: 1.30, 2.09), where at or below is considered healthy. Compared to large urban census tracts, rural and small urban tracts had 10% (; 95% CI: 1.00, 1.23) and 5% (; 95% CI: 0.96, 1.16) higher ADRD, respectively. For every percent increase of the county population with limited access to healthy food, ADRD was 2% higher (; 95% CI: 1.01, 1.04). Neighborhood environment features, such as higher air pollution levels, were associated with higher neighborhood ADRD incidence. The INLA-SPDE method could have broad applicability to data collected across disparate spatial scales. https://doi.org/10.1289/EHP13183.

Technology-based instrumental activities of daily living in persons with Alzheimer's disease and related disorders.

Instrumental activities of daily living (iADLs) increasingly involve technology (e.g., making payments online, texting). The current study examined the applicability and diagnostic accuracy of technology-based iADLs in those evaluated for Alzheimer's disease and related dementias (ADRD). A total of 264 care partners of persons undergoing comprehensive interdisciplinary evaluations completed the Functional Activities Questionnaire and 11 technology-based iADL items. Technology-based iADLs applied to more than 80% of patients. Average dependence on technology-based items was overall less than for traditional iADLs. The addition of technology-based items to traditional iADL items slightly improved the ability to identify individuals with dementia. When considered separately, technology-based iADL items demonstrated comparable ability to distinguish between diagnostic stages. Technology use is common in older adults with ADRD for a range of daily activities. Accounting for technology use increases the content validity of existing iADL measures for the modern context and yields comparable diagnostic accuracy. Technology use is often integral to daily activity performance for individuals with Alzheimer's disease and related dementias (ADRD).Daily technologies, such as smartphones, were used frequently by those with ADRD.Many individuals were less dependent on technology activities than traditional activities.Adding technology questions slightly increased diagnostic accuracy for detecting dementia.

Impact of dementia and socioeconomic disadvantage on days at home after traumatic brain injury among older Medicare beneficiaries: A cohort study.

Time spent at home may aid in understanding recovery following traumatic brain injury (TBI) among older adults, including those with Alzheimer's disease and related dementias (ADRD). We examined the impact of ADRD on recovery following TBI and determined whether socioeconomic disadvantages moderated the impact of ADRD. We analyzed Medicare beneficiaries aged ≥65 years diagnosed with TBI in 2010-2018. Home time was calculated by subtracting days spent in a care environment or deceased from total follow-up, and dual eligibility for Medicaid was a proxy for socioeconomic disadvantage. A total of 2463 of 20,350 participants (12.1%) had both a diagnosis of ADRD and were Medicaid dual-eligible. Beneficiaries with ADRD and Medicaid spent markedly fewer days at home following TBI compared to beneficiaries without either condition (rate ratio 0.66; 95% confidence interval [CI] 0.64, 0.69). TBI resulted in a significant loss of home time over the year following injury among older adults with ADRD, particularly for those who were economically vulnerable. Remaining at home after serious injuries such as fall-related traumatic brain injury (TBI) is an important goal for older adults. No prior research has evaluated how ADRD impacts time spent at home after TBI. Older TBI survivors with ADRD may be especially vulnerable to loss of home time if socioeconomically disadvantaged. We assessed the impact of ADRD and poverty on a novel DAH measure after TBI. ADRD-related disparities in DAH were significantly magnified among those living with socioeconomic disadvantage, suggesting a need for more tailored care approaches.

Care sequences leading to the diagnosis of Alzheimer's disease and related dementias: An analysis of electronic health records.

We examined the sequences of clinical care leading to diagnoses of Alzheimer's disease and related dementias (ADRD) using electronic health records from a large academic medical center. We included patients aged 65+ with their first ADRD diagnoses from January 1, 2014 to December 31, 2019. Using state sequence analysis, care sequences were defined by the ordering of healthcare utilizations occurred in the 2 years before ADRD diagnosis. Of 3621 patients (median age 80), nearly half followed a care sequence of having one primary care visit close to their ADRD diagnosis. Additional care sequences included periodic (n=322, 8.9%) and multiple (n=416, 11.5%) outpatient visits to primary care and having one (n=395, 10.9%), multiple (n=469, 13.0%), or highly frequent (n=357, 10.7%) outpatient visits to other specialties. Patients' sociodemographic traits contributed to the variability in care sequences. Several distinct patterns of care leading to ADRD diagnoses were identified. Integrated care models are needed to promote early identification of ADRD. Dementia patients followed distinct care pathways prior to their dementia diagnoses. Key sociodemographic traits contributed to the variation in the sequences of care. Racial differences in the sequencing of care were also found, but only in women.

Blood pressure variability supersedes heart rate variability as a real-world measure of dementia risk

Blood pressure variability (BPV) and heart rate variability (HRV) have been associated with Alzheimer’s Disease and Related Dementias (ADRD) in rigorously controlled studies. However, the extent to which BPV and HRV may offer predictive information in real-world, routine clinical care is unclear. In a retrospective cohort study of 48,204 adults (age 54.9 ± 17.5 years, 60% female) receiving continuous care at a single center, we derived BPV and HRV from routinely collected clinical data. We use multivariable Cox models to evaluate the association of BPV and HRV, separately and in combination, with incident ADRD. Over a median 3 [2.4, 3.0] years, there were 443 cases of new-onset ADRD. We found that clinically derived measures of BPV, but not HRV, were consistently associated with incident ADRD. In combined analyses, only patients in both the highest quartile of BPV and lowest quartile of HRV had increased ADRD risk (HR 2.34, 95% CI 1.44–3.81). These results indicate that clinically derived BPV, rather than HRV, offers a consistent and readily available metric for ADRD risk assessment in a real-world patient care setting. Thus, implementation of BPV as a widely accessible tool could allow clinical providers to efficiently identify patients most likely to benefit from comprehensive ADRD screening.

A Duty to Care: Male Perspectives on the Caregiver Role for Persons With Alzheimer's or Dementia.

The population of family caregivers (FCGs) of persons with Alzheimer's disease and related dementias (ADRD) is growing, as is the proportion of males taking on this traditionally female role. Caregiving research has centered around women due to historic roles, resulting in a knowledge gap regarding male caregiving experiences. The purpose of this qualitative descriptive study was to explore the experiences of male FCGs of people with ADRD. Eleven male caregivers were recruited and interviewed by telephone or Zoom/videoconferencing. Data were analyzed using thematic analysis. Four major themes emerged highlighting males' struggles with the unfamiliar caregiving role and changing identity; their acknowledgment of personal growth and discovery through caregiving; their challenges in finding the "right" kind of support; and their perceived reshaping of masculinity through the caregiving role. Male caregivers expressed unique experiences as FCGs. Findings indicate the need for researchers and clinicians to develop tailored support to address their needs.

Estimating dementia risk in an African American population using the DCTclock.

The prevalence of Alzheimer's disease (AD) and related dementias (ADRD) is increasing. African Americans are twice as likely to develop dementia than other ethnic populations. Traditional cognitive screening solutions lack the sensitivity to independently identify individuals at risk for cognitive decline. The DCTclock is a 3-min AI-enabled adaptation of the well-established clock drawing test. The DCTclock can estimate dementia risk for both general cognitive impairment and the presence of AD pathology. Here we performed a retrospective analysis to assess the performance of the DCTclock to estimate future conversion to ADRD in African American participants from the Rush Alzheimer's Disease Research Center Minority Aging Research Study (MARS) and African American Clinical Core (AACORE). We assessed baseline DCTclock scores in 646 participants (baseline median age = 78.0 ± 6.4, median years of education = 14.0 ± 3.2, 78% female) and found significantly lower baseline DCTclock scores in those who received a dementia diagnosis within 3 years. We also found that 16.4% of participants with a baseline DCTclock score less than 60 were significantly more likely to develop dementia in 5 years vs. those with the highest DCTclock scores (75-100). This research demonstrates the DCTclock's ability to estimate the 5-year risk of developing dementia in an African American population. Early detection of elevated dementia risk using the DCTclock could provide patients, caregivers, and clinicians opportunities to plan and intervene early to improve cognitive health trajectories. Early detection of dementia risk can also enhance participant selection in clinical trials while reducing screening costs.

Alcohol and stress exposure across the lifespan are key risk factors for Alzheimer's Disease and cognitive decline

Alzheimer's Disease and related dementias (ADRD) are an increasing threat to global health initiatives. Efforts to prevent the development of ADRD require understanding behaviors that increase and decrease risk of neurodegeneration and cognitive decline, in addition to uncovering the underlying biological mechanisms behind these effects. Stress exposure and alcohol consumption have both been associated with increased risk for ADRD in human populations. However, our ability to understand causal mechanisms of ADRD requires substantial preclinical research. In this review, we summarize existing human and animal research investigating the connections between lifetime stress and alcohol exposures and ADRD.

Blood Markers in Relation to a History of Traumatic Brain Injury Across Stages of Cognitive Impairment in a Diverse Cohort.

Traumatic brain injury (TBI) has been linked to multiple pathophysiological processes that could increase risk for Alzheimer's disease and related dementias (ADRD). However, the impact of prior TBI on blood biomarkers for ADRD remains unknown. Using cross-sectional data, we assessed whether a history of TBI influences serum biomarkers in a diverse cohort (approximately 50% Hispanic) with normal cognition, mild cognitive impairment, or dementia. Levels of glial fibrillary acidic protein (GFAP), neurofilament light (NFL), total tau (T-tau), and ubiquitin carboxy-terminal hydrolase-L1 (UCHL1) were measured for participants across the cognitive spectrum. Participants were categorized based on presence and absence of a history of TBI with loss of consciousness, and study samples were derived through case-control matching. Multivariable general linear models compared concentrations of biomarkers in relation to a history of TBI and smoothing splines modelled biomarkers non-linearly in the cognitively impaired groups as a function of time since symptom onset. Each biomarker was higher across stages of cognitive impairment, characterized by clinical diagnosis and Mini-Mental State Examination performance, but these associations were not influenced by a history of TBI. However, modelling biomarkers in relation to duration of cognitive symptoms for ADRD showed differences by history of TBI, with only GFAP and UCHL1 being elevated. Serum GFAP, NFL, T-tau, and UCHL1 were higher across stages of cognitive impairment in this diverse clinical cohort, regardless of TBI history, though longitudinal investigation of the timing, order, and trajectory of the biomarkers in relation to prior TBI is warranted.

Preventable Emergency Department Visits of Patients with Alzheimer's Disease and Related Dementias During the COVID-19 Pandemic by Hospital-Based Health Information Exchange.

Background: This study examined the relationship between hospital-based electronic health information exchange (HIE) and the likelihood of having a preventable emergency department (ED) visit during the COVID-19 pandemic for US patients with Alzheimer's Disease and Related Dementias (ADRD). Methods: We used multi-level data from six states. The linked data sets included the 2020 State Emergency Department Databases (SEDD), the Area Health Resources File, the American Hospital Association (AHA) Annual Survey, and the AHA Information Technology Supplement to study 85,261 hospital discharges from patients with ADRD. Logistic regression models were produced to determine the odds of having a preventable ED visit among patients with ADRD. Results: Our final sample included 85,261 hospital discharges from patients with ADRD. Patients treated in hospitals that received more types of clinical information for treating patients with COVID-19 from outside providers (OR = 0.961, p < .05) and/or hospitals that received COVID-19 test results from more outside entities were significantly less likely to encounter preventable EDs (OR = 0.964, p < .05), especially among patients who also had multiple chronic conditions (MCC) (OR = 0.89, p = .001; OR = 0.856, p < .001). Conclusion: Our results suggest that electronic HIE may be useful for reducing preventable ED visits during the COVID-19 pandemic for people with ADRD and ADRD alongside MCC.

Ezetimibe Lowers Risk of Alzheimer's and Related Dementias over Sevenfold, Reducing Aggregation in Model Systems by Inhibiting 14-3-3G::Hexokinase Interaction.

Numerous factors predispose to progression of cognitive impairment to Alzheimer's disease and related dementias (ADRD), most notably age, APOE(ε4) alleles, traumatic brain injury, heart disease, hypertension, obesity/diabetes, and Down's syndrome. Protein aggregation is diagnostic for neurodegenerative diseases, and may be causal through promotion of chronic neuroinflammation. We isolated aggregates from postmortem hippocampi of ADRD patients, heart-disease patients, and age-matched controls. Aggregates, characterized by high-resolution proteomics (with or without crosslinking), were significantly elevated in heart-disease and ADRD hippocampi. Hexokinase-1 (HK1) and 14-3-3G/γ proteins, previously implicated in neuronal signaling and neurodegeneration, are especially enriched in ADRD and heart-disease aggregates vs. controls (each P<0.008), and their interaction was implied by extensive crosslinking in both disease groups. Screening the hexokinase-1::14-3-3G interface with FDA-approved drug structures predicted strong affinity for ezetimibe, a benign cholesterol-lowering medication. Diverse cultured human-cell and whole-nematode models of ADRD aggregation showed that this drug potently disrupts HK1::14-3-3G adhesion, reduces disease-associated aggregation, and activates autophagy. Mining clinical databases supports drug reduction of ADRD risk, decreasing it to 0.14 overall (P<0.0001; 95% C.I. 0.06-0.34), and <0.12 in high-risk heart-disease subjects (P<0.006). These results suggest that drug disruption of the 14-3-3G::HK1 interface blocks an early "lynchpin" adhesion, prospectively reducing aggregate accrual and progression of ADRD.

Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions.

This study aimed to understand whether older adults' longitudinal completion of assessments in an online Alzheimer's disease and related dementias (ADRD)-related registry is influenced by self-reported medical conditions. Brain Health Registry (BHR) is an online cognitive aging and ADRD-related research registry that includes longitudinal health and cognitive assessments. Using logistic regressions, we examined associations between longitudinal registry completion outcomes and self-reported (1) number of medical conditions and (2) eight defined medical condition groups (cardiovascular, metabolic, immune system, ADRD, current psychiatric, substance use/abuse, acquired, other specified conditions) in adults aged 55+ (N = 23,888). Longitudinal registry completion outcomes were assessed by the completion of the BHR initial questionnaire (first questionnaire participants see at each visit) at least twice and completion of a cognitive assessment (Cogstate Brief Battery) at least twice. Models included ethnocultural identity, education, age, and subjective memory concern as covariates. We found that the likelihood of longitudinally completing the initial questionnaire was negatively associated with reporting a diagnosis of ADRD and current psychiatric conditions but was positively associated with reporting substance use/abuse and acquired medical conditions. The likelihood of longitudinally completing the cognitive assessment task was negatively associated with number of reported medical conditions, as well as with reporting cardiovascular conditions, ADRD, and current psychiatric conditions. Previously identified associations between ethnocultural identity and longitudinal assessment completion in BHR remained after accounting for the presence of medical conditions. This post hoc analysis provides novel, initial evidence that older adults' completion of longitudinal assessments in an online registry is associated with the number and types of participant-reported medical conditions. Our findings can inform future efforts to make online studies with longitudinal health and cognitive assessments more usable for older adults with medical conditions. The results need to be interpreted with caution due to selection biases, and the under-inclusion of minoritized communities.

Developing the Healthy Actions and Lifestyles to Avoid Dementia or Hispanos y el ALTo a la Demencia program.

With Alzheimer's disease and related dementias (ADRD) representing an enormous public health challenge, there is a need to support individuals in learning about and addressing their modifiable risk factors (e.g., diet, sleep, and physical activity) to prevent or delay dementia onset. However, there is limited availability for evidence-informed tools that deliver both quality education and support for positive behavior change such as by increasing self-efficacy and personalizing goal setting. Tools that address the needs of Latino/a, at higher risk for ADRD, are even more scarce. We established a multidisciplinary team to develop the Healthy Actions and Lifestyles to Avoid Dementia or Hispanos y el ALTo a la Demencia (HALT-AD) program, a bilingual online personalized platform to educate and motivate participants to modify their risk factors for dementia. Grounded in social cognitive theory and following a cultural adaptation framework with guidance from a community advisory board, we developed HALT-AD iteratively through several cycles of rapid prototype development, user-centered evaluation through pilot testing and community feedback, and refinement. Using this iterative approach allowed for more than 100 improvements in the content, features, and design of HALT-AD to improve the program's usability and alignment with the interests and educational/behavior change support needs of its target audience. Illustrative examples of how pilot data and community feedback informed improvements are provided. Developing HALT-AD iteratively required learning through trial and error and flexibility in workflows, contrary to traditional program development methods that rely on rigid, pre-set requirements. In addition to efficacy trials, studies are needed to identify mechanisms for effective behavior change, which might be culturally specific. Flexible and personalized educational offerings are likely to be important in modifying risk trajectories in ADRD.

New directions for Alzheimer's disease research from the Jackson Laboratory Center for Alzheimer's and Dementia Research 2022 workshop.

In September 2022, The Jackson Laboratory Center for Alzheimer's and Dementia Research (JAX CADR) hosted a workshop with leading researchers in the Alzheimer's disease and related dementias (ADRD) field. During the workshop, the participants brainstormed new directions to overcome current barriers to providing patients with effective ADRD therapeutics. The participants outlined specific areas of focus. Following the workshop, each group used standard literature search methods to provide background for each topic. The team of invited experts identified four key areas that can be collectively addressed to make a significant impact in the field: (1) Prioritize the diversification of disease targets, (2) enhance factors promoting resilience, (3) de-risk clinical pipeline, and (4) centralize data management. In this report, we review these four objectives and propose innovations to expedite ADRD therapeutic pipelines.

Analyzing risk factors for post-acute recovery in older adults with Alzheimer's disease and related dementia: A new semi-parametric model for large-scale medicare claims.

Nearly 300,000 older adults experience a hip fracture every year, the majority of which occur following a fall. Unfortunately, recovery after fall-related trauma such as hip fracture is poor, where older adults diagnosed with Alzheimer's disease and related dementia (ADRD) spend a particularly long time in hospitals or rehabilitation facilities during the post-operative recuperation period. Because older adults value functional recovery and spending time at home versus facilities as key outcomes after hospitalization, identifying factors that influence days spent at home after hospitalization is imperative. While several individual-level factors have been identified, the characteristics of the treating hospital have recently been identified as contributors. However, few methodological rigorous approaches are available to help overcome potential sources of bias such as hospital-level unmeasured confounders, informative hospital size, and loss to follow-up due to death. This article develops a useful tool equipped with unsupervised learning to simultaneously handle statistical complexities that are often encountered in health services research, especially when using large administrative claims databases. The proposed estimator has a closed form, thus only requiring light computation load in a large-scale study. We further develop its asymptotic properties with stabilized inference assisted by unsupervised clustering. Extensive simulation studies demonstrate superiority of the proposed estimator compared to existing estimators.

POLYPHARMACY AND THE SYMPTOM EXPERIENCE OF OLDER ADULTS WITH AND WITHOUT ALZHEIMER’S DISEASE AND RELATED DEMENTIAS

Abstract Older adults, including those living with Alzheimer’s disease and related dementias (ADRD), experience polypharmacy (PPY) (&amp;gt;5 medications daily) due to multiple chronic conditions. High symptom burden in older adults with ADRD and multimorbidity is well known. However, there is a gap in knowledge regarding symptoms experienced by older adults with and without ADRD who experience PPY. To address this gap, we conducted a longitudinal case-control observational study utilizing Rounds 6 to 9 (2016 to 2019) of the National Health and Aging Trends Study (NHATS) datasets. PPY was categorized by the number of medications from Round 6. We categorized individuals into four groups based on presence of ADRD and/or PPY (PPY and ADRD, PPY only, ADRD only, no PPY/ADRD) (N=2052). We identified symptoms associated with PPY (hopelessness, anxiety, general pain, stomach pain, breathing problems, weight loss, balance problems, fatigue, insomnia) in each group over each time point. Among those with ADRD (11.8%), over half experienced PPY (52.3%). Older adults with PPY and ADRD experienced a mean of 4.85 symptoms over all time points compared to 3.52 (ADRD only), 2.79 (no PPY/ADRD) and 3.93 (PPY only) (p=&amp;lt;0.001). Symptom frequencies in the PPY and ADRD group remained higher than all other groups across all four time points. Understanding the impact of medications on older adult’s quality life is a goal of the 4Ms framework. Future research will examine the symptoms associated with PPY and ADRD, physical function and health outcomes to inform medication management for older adults with dementia.

ADRD: A REVIEW OF THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE’S (PCORI) RESEARCH PORTFOLIO AND PRIORITIES

Abstract Given the aging of the U.S. population, the number of individuals living with Alzheimer’s Disease and Related Dementias (ADRD) is projected to reach 13 million by 2050. There is an urgent need for research efforts to advance prevention, diagnosis, and treatment strategies for ADRD. Furthermore, caregivers of individuals with ADRD often face distinct challenges and experience significant caregiving burden that has an impact on their well-being. To address unmet needs of individuals with ADRD and their caregivers, PCORI has invested nearly $85 million in patient-centered comparative clinical effectiveness research (CER) focused on ADRD and has initiated several stakeholder convenings to identify future research priorities. PCORI’s ADRD portfolio of 15 CER studies includes interventions focused on caregiving, polypharmacy, telehealth, care models, and palliative care. Additionally, PCORI has funded engagement awards, dissemination &amp; implementation initiatives, and research infrastructure projects to help facilitate the conduct and awareness of research on persons living with ADRD and their caregivers. To support continued research in this area, PCORI plans to re-issue a $50 million funding initiative on Healthy Aging with a special area of emphasis on interventions for caregivers of older adults living with ADRD. By systematically synthesizing PCORI’s portfolio and themes from stakeholder convenings in ADRD, we can identify the strengths of current investments and understand evidence gaps to guide PCORI’s future investments. This will enable us to holistically address future real-world, decisional dilemmas most important to patients, caregivers, and other stakeholders.

SUPPORTING CARE PARTNERS OF PEOPLE LIVING WITH DEMENTIA: EXPLORING CHANGES IN POLICY AND PRACTICE

Abstract Most care and support for people living with Alzheimer’s Disease and related dementias (ADRD) is provided unpaid at home or in community settings. To better understand the caregiving-related priorities of people with lived experience as care partners (CP) of people living with ADRD, focus groups were convened with CPs who identify with historically and currently underserved communities that may have difficulty accessing culturally specific services for people living with ADRD in and near Portland, Oregon. In-depth interviews (n=20) were conducted with local, state, and national-level organizational leaders who represent or provide ADRD support services to various underserved communities including Black, Indigenous, Asian, and Latinx Americans to gather additional perspectives on ADRD care and support needs. Care partners across all populations reported a need for additional supports that could help them in carrying out their caregiving responsibilities. While the specific needs and types of supports identified varied across populations, the findings point to multiple unmet needs across all populations in terms of ADRD CP-specific supports. Changes to policy and practice are needed to improve the experience of CPs of people living with ADRD. New policies focused on promoting access to services, education and training, and financing of supports such as respite must be developed and implemented in partnership with community-based organizations and ADRD CPs from underserved communities and communities that may have difficulty accessing culturally-specific services and unique supports. The findings also point to universal needs related to caregiving across all populations that could be addressed through new policy initiatives.

LIVING ALONE WITH DEMENTIA AND NAVIGATING ESSENTIAL TRANSPORTATION NEEDS

Abstract Transportation serves a basic human need for older adults and is firmly linked to independence, quality of life, and access to essential services (e.g., medical, nutritional, social). The matter of transportation and driving reduction/cessation is especially challenging in regard to people with Alzheimer’s and related dementias (ADRD). Many individuals with ADRD rely on cohabitating caregiver(s) (e.g., spouse, partner, adult children) to arrange and execute essential transportation needs. However, little is known about how individuals with ADRD who reside alone in the community navigate required transportation. In order to address this gap in the literature, this paper combines narrative data from two ongoing National Institutes of Health (NIH)-funded interview-based protocols that focus on understanding the needs of community-dwelling older adults with ADRD and a collateral informant (N=84). Interview data underwent thematic analyses. Findings indicate four overarching themes: 1. Nuances of ridesharing apps, 2. Family/fictive kin transportation network(s), 3. Unpredictable public transportation, 4. Unmet needs exacerbated by inadequate transportation, and 5. Balancing driving autonomy and risk of harm to self/others. These thematic illations have implications to assist development of strategies for continued mobility and appropriate access to required services for those who reside alone with ADRD, despite changing needs and capabilities. Historically, the focus on transportation among those with ADRD has centered on those with a cohabitating caregiver, however, our findings provide insights into the nuances of how this understudied subpopulation with ADRD experience and navigate their mobility needs.