Providing Dementia Care Research Articles

The Behaviours in Dementia Toolkit: A Descriptive Study on the Reach and Early Impact of a Digital Health Resource Library About Dementia-Related Mood and Behaviour Changes.

Background: Dementia is a syndrome with a high global prevalence that includes a number of progressive diseases of the brain affecting various cognitive domains such as memory and thinking and the performance of daily activities. It manifests as symptoms which often include significant mood and behaviour changes that are highly varied. Changed moods and behaviours due to dementia may reflect distress and may be stressful for both the person living with dementia and their informal and formal carers. To provide dementia care support specific to mood and behaviour changes, the Behaviours in Dementia Toolkit website (BiDT) was developed using human-centred design principles. The BiDT houses a user-friendly, digital library of over 300 free, practical, and evidence-informed resources to help all care partners better understand and compassionately respond to behaviours in dementia so they can support people with dementia to live well. Objective: (1) To characterize the users that visited the BiDT; and (2) to understand the platform's early impact on these users. Methods: A multi-method, descriptive study was conducted in the early post-website launch period. Outcomes and measures examined included the following: (1) reach: unique visitors, region, unique visits, return visits, bounce rate; (2) engagement: engaged users, engaged sessions, session duration, pages viewed, engagement rate per webpage, search terms, resources accessed; (3) knowledge change; (4) behaviour change; and (5) website impact: relevance, feasibility, intention to use, improving access and use of dementia guidance, recommend to others. Data was collected using Google Analytics and an electronic survey of website users. Results: From 4 February to 31 March 2024, there were 76,890 unique visitors to the BiDT from 109 countries. Of 76,890 unique visitors to the BiDT during this period, 16,626 were engaged users as defined by Google Analytics (22%) from 80 countries. The highest number of unique engaged users were from Canada (n = 8124) with an engagement rate of 38%. From 5 March 2024 to 31 March 2024, 100 electronic surveys were completed by website users and included in the analysis. Website users indicated that the BiDT validated or increased their dementia care knowledge, beliefs, and activities (82%) and they reported that the website validated their current care approaches or increased their ability to provide care (78%). Further, 77% of respondents indicated that they intend to continue using the BiDT and 81.6% said that they would recommend it to others to review and adopt. Conclusions: The BiDT is a promising tool for sharing practical and evidence-informed information resources to support people experiencing dementia-related mood and behaviour changes. Early evaluation of the website has demonstrated significant reach and engagement with users in Canada and internationally. Survey data also demonstrated high ratings of website relevance, feasibility, intention to use, knowledge change, practice support, and its contribution to dementia guidance.

Training for dementia care and support in rural and remote Australia: appraisals from a nationwide workforce survey

BackgroundDementia is a growing challenge to health and aged care worldwide and is the leading cause of disease burden in older Australians. High-quality person-centred care of people with dementia and support for their family caregivers require a trained multidisciplinary health and aged care workforce. Compared with major cities in Australia, rural and remote areas encounter greater challenges in workforce recruitment and retention. Moreover, these areas have distinctive distance-related barriers to workforce training and a higher proportion of aged and First Nations people at elevated risk of developing dementia. We designed and distributed a survey to investigate the perspectives on training among rural and remote health and aged care workers providing dementia care in diverse occupations and settings.MethodsAfter piloting, the online survey was promoted to rural and remote organisations and professional networks nationwide. The instrument included multiple-choice and ordered-scale items on respondents’ dementia care self-rating and appraisal of their current workplace dementia care training, as well as items categorising their demographic characteristics, main work role, main workplace setting, and geographical site. Analysis incorporated description of respondent characteristics and estimation along with graphical presentation of response proportions for ordered-scale items, with differences among key respondent subgroups (i.e., workplace setting, remoteness, and main role) investigated using crude and multivariable robust Poisson regression models.ResultsThere were 558 respondents from residential aged care, community/primary care and hospital settings across all Australian states and territories. The majority (61.7%) were from degree-requiring health professional/management positions, and 27.4% were certificate-requiring workers (predominantly personal care assistants and enrolled nurses). A majority considered that the dementia care provided in their current workplace was inadequate overall and specifically in relation to First Nations and culturally and linguistically diverse clients. Respondents noted organisational resource limitations impeding workers’ participation in training, and insufficient opportunities for input into determining priorities for training content and delivery. Hospital/acute care-based workers had the least favourable self-ratings and represented the highest proportion of respondents reporting shortcomings of training.ConclusionsHealth and aged care workers in rural and remote Australia perceive substantial shortcomings in the dementia care training provided by their workplace.

Factors Related to Dementia Attitudes Among Dementia Care Providers: A Systematic Review and Meta-Analysis

Purpose: This study aimed to identify variables associated with dementia attitudes among Korean dementia caregivers and to determine the effect size of the association between these variables and dementia attitudes. Methods: A meta-analysis was conducted by analysing 29 master's and doctoral theses and journal articles published in Korea. Results: Four distinct groups were identified among the variables: those related to practice, personality, psychological aspects of the job, and knowledge. The largest effect size was found for practice (effect size, ESr=.51), personality (ESr=.38), job-related psychological (ESr=.24), and knowledge (ESr=.17). Conclusion: The results of this study can be useful in developing management and education programs to improve dementia attitudes in caregivers, taking into account variables related to dementia attitudes.

Administrators in Chinese Faith-Based Nursing Homes Providing Dementia Care: Ascertaining Their Primary Stressors and Coping Strategies

ABSTRACT The Chinese population of older adults is the largest in the world and growing rapidly. Faith-based nursing homes are key players in the provision of care to the most vulnerable aging groups, including adults with dementia. Yet, little is known about the challenges administrators of these facilities encounter. The present study addresses this knowledge gap by identifying the primary stressors administrators of faith-based nursing home experience and the strategies they deploy to cope with the challenges. Semi-structured interviews were conducted with 21 administrators located in 14 Chinese provinces. The findings indicate the two most prominent stressors are: managing residents with dementia, and procuring sufficient staff, followed by financial pressures, dealing with governmental regulations, and interacting with difficult family members. The most common coping strategy was operationalizing spiritual practices (e.g. prayer), followed by addressing the cited stressors (e.g. recruiting staff continuously) and using personalized strategies (e.g. walking in nature). The mean level of salience assigned to spiritual coping was 9.43 (SD = 1.40) on the 0–10 scale, indicating spirituality was a critical resource for most respondents. The findings underscore the importance of supporting administrators’ spirituality to help mitigate burnout and maintain a high level of functioning in the face of significant challenges.

Temporal trends in sex differences in dementia care—results from the Swedish registry for cognitive/dementia disorders, SveDem

The Swedish Registry for Cognitive/Dementia Disorders (SveDem) follows the quality and equity of dementia care across Sweden. In this study, we investigated temporal trends in sex-based differences in the provision of dementia care. Outcomes were diagnostic work-up, assessments performed by health care professionals, medication use, and social support (defined as initiating contact with a social worker and/or support to relatives). Revisions in dementia diagnosis between baseline and follow-up were evaluated as a marker of diagnostic stability. We included 100,534 individuals diagnosed with dementia between 2008 and 2021 (median age 80 years, 58% women). Dementia registrations rose from 2008 to 2014, then declined after 2015. Alzheimer’s dementia was more frequent in women than men (35% versus 17%), while vascular dementia was less frequent (17% versus 21%). Small differences were observed in dementia care outcomes between sexes. Where differences reached statistical significance, effect sizes were minimal. Dementia diagnosis was revised in 5% of men and 4% of women over a median period of 11 months between baseline and first follow-up. Our results revealed negligible temporal trends in sex-based differences in dementia care among individuals included in the SveDem. However, as SveDem covers only about one third of Sweden’s dementia population, findings may not fully represent national trends.

Dementia care management in primary care practices: a descriptive study among nurse practitioners

BackgroundMore than 55 million people worldwide have dementia, and every year, 10 million new cases are diagnosed. In the United States (U.S.) alone, 6.9 million Americans ages 65 and older have dementia. Health systems are searching for innovative solutions to expand the primary care system’s capacity to care for these patients. Advanced practice nurses such as nurse practitioners (NPs) are vital to increasing primary care capacity to meet the need, yet primary care NPs often face structural, organizational, and workforce challenges. More specifically, little is known about NPs who care for dementia patients in primary care settings. This study explored the practice structural capabilities, organizational context, and job outcomes (i.e., burnout, job dissatisfaction, and intent to leave the practice) among NPs providing care for patients with dementia in U.S. primary care practices.MethodsWe conducted a national cross-sectional survey of NPs using modified Dillman methods. Between 2021 and 2023, NPs working in primary care practices who cared for patients with dementia received a mail and online survey. Additional survey mailings, emails, postcard reminders, and phone calls encouraged non-respondents to participate. In total, 968 NPs responded across 847 practices. We estimated a response rate of 16.4-36.4%.ResultsNPs reported that the quality of dementia care in their practices is poorer than the overall care provided. About 45% of NPs indicated that dementia care in their practices is less than “very good,” while only 17% reported that the overall care delivered falls below that standard. Additionally, NPs reported significant deficits in practice structural capabilities for dementia care and challenges with administration within their organization. The findings show that over a third of NPs report burnout.ConclusionsGiven the projected growth in the number of patients with dementia and the growing workforce of NPs worldwide, policy and practice efforts should be directed toward strengthening primary care practices to provide quality care for dementia patients. Bolstering NP workforce capacity and supporting NP roles in dementia care could improve organizational capacity to provide dementia care. However, widespread burnout among NPs found in our study could undermine their contribution to the dementia care workforce.

Power, class, and gender in dementia care: Stories of carer precariousness from culturally and linguistically diverse female family carers in Australia.

Dementia care provision is a global challenge. However, dynamics to provide care to a family member living with dementia in their home are far more complex. Evidence suggests that dementia care among culturally and linguistically diverse (CALD) communities is largely offered by family members within communities. But at a family level, care happens at the intersection of unequal gender relations, complex cultural constructions of dementia, and longstanding family values and traditions. While these dynamics show the intersection of power, class, and gender, these aspects have not gained widespread currency in dementia policy plans. Yet they shape the identities and social positioning of carers and consequently carer precariousness. This article reveals that the role of caring for family members living with dementia is embedded in complex power structures that stigmatise the identities of carers and those cared for, reproduces gendered social hierarchies, exacerbate economic uncertainties, and diminish the merits of filial piety - a valued cultural practice. By centering the voices of female carers from a CALD background, the authors highlight the need for policymakers to devote particular attention to how the intersection of the diverse cultural environments with dementia care at a family level induce carer insecurities and vulnerabilities - precariousness. This calls for an emancipatory dementia policy agenda that values the lived experiences of female carers' cumulative disadvantage over the course of providing care.

Workforce Dementia Training Needs and Preferences for Residential Aged Care.

Workforce Dementia Training Needs and Preferences for Residential Aged Care.

Nurses' experiences of providing dementia care in acute hospital settings.

Increasing numbers of older people admitted to acute hospitals have dementia. For nurses, providing dementia care in acute settings involves unique challenges such as ensuring staff and patient safety and managing the stress caused by insufficient resources. To explore nurses' experiences and challenges when caring for patients with dementia in an acute general hospital setting. This study used a qualitative approach and semi-structured interviews to explore participants' experiences of caring for patients with dementia. All permanent nurses working in three acute medical wards in one NHS trust ( n =120) received an email inviting them to take part. Eight nurses volunteered to be interviewed. Three main themes were extrapolated from the thematic analysis of interview data: attributes of dementia care; planning care effectively; and staff education and training needs. Participants emphasised the importance of person-centred care and the challenges involved in providing such care due to staff shortages, which could result in frustration, exhaustion and stress for both staff and patients. Nurses in acute care settings need additional education and training to improve their knowledge and skills in relation to dementia care. The involvement of families is important for the optimal care of patients with dementia on acute hospital wards.

Perspectives of general practice nurses, people living with dementia and carers on the delivery of dementia care in the primary care setting: potential models for optimal care.

Background The increasing prevalence of dementia requires a change in the organisation and delivery of primary care to improve the accessibility of best-practice care for people living with dementia and their carer(s). The aim of this study is to describe potential models of dementia care in the primary care setting whereby the nurse plays a central role, from the perspectives of nurses working in general practice, people living with dementia and carer(s). Methods Data from two qualitative semi-structured interview studies were pooled to explore the views of nurses working in general practice, people living with dementia and carer(s) on potential models for the provision of nurse-delivered dementia care. Data were thematically analysed. Six carers, five people living with dementia and 13 nurses working in general practice took part in the study. The data used in this study have not been previously reported. Results Three themes describing nurse-delivered models of care to meet the healthcare needs of people living with dementia and their carer(s) were identified: nurse-led care, dementia care nurse specialist outreach and nurse-enhanced post-diagnostic care. Conclusions This study describes three potential models of dementia care delivery by the nurse in general practice. These findings can be used to guide the implementation of new models of care that integrate the provision of dementia care by nurses within interdisciplinary primary care teams, to better meet the healthcare needs of people living with dementia and their carer(s).

What happens behind closed doors? Investigating care practices in nursing home and assisted living memory care units

In the United States, long-term care providers, such as nursing homes and assisted living communities, are meeting consumer demand through housing and care options designed to support the growing population of people living with dementia. One approach to providing dementia care is the development of “memory care units” within existing nursing homes and assisted living communities. Memory care units provide a setting more tailored to the cognitive and functional abilities of these individuals. There is emerging evidence about the optimum strategies for memory care environments; however, little is known about the implementation, prevalence, and quality of practice—and environment-based strategies—in memory care units. This article provides insight into the prevalence of memory care unit practices using data from Ohio. The analysis points to policy and practice opportunities to address the quality of life and care for people living with dementia.

2768 Needs of people with dementia in the perioperative environment from the perspective of healthcare professionals

Abstract Introduction The incidence of dementia among patients in perioperative settings is on the rise, presenting significant challenges for healthcare professionals in delivering adequate and appropriate care to this patient population. In order to gain a deeper understanding of the perioperative care needs of patients with dementia, thirty healthcare professionals were interviewed. The focus was on their experiences and perspectives regarding the fulfilment of these needs. Key factors influencing perioperative care were identified and categorised into three main themes: patient-related factors, healthcare professional-related factors, and healthcare environment-related factors. Methods Thirty interviews were conducted with a diverse group of healthcare professionals, including anaesthetists, surgeons, nurses, and other perioperative staff. Thematic analysis was employed to process and interpret the data, identifying recurring themes and sub-themes that reflect the complexities of perioperative care for patients with dementia. Results The analysis revealed three primary themes: 1) Factors related to the patient with dementia: Cognitive impairment and comorbidities uniquely challenge perioperative care. The unfamiliar hospital environment often exacerbates cognitive symptoms, and adherence to postoperative protocols can be problematic. Family involvement is crucial in supporting these patients. 2) Healthcare Professional Factors: Perceptions of dementia, communication issues, pain assessment, and the need for personalised care were highlighted. Training and education deficits among healthcare professionals were evident, impacting the quality of care. 3) Institutional Factors: Organisational policies and resource allocation significantly affect the provision of dementia care. Support for healthcare professionals through ongoing education and the development of dementia-specific guidelines were identified as essential needs. Conclusion Effective perioperative care for patients with dementia requires addressing multifaceted challenges. Improving communication, enhancing education and training for healthcare professionals, involving family members, and ensuring institutional support are critical steps. A comprehensive, empathetic approach can lead to better outcomes and experiences for patients with dementia in the perioperative setting.

Family carers and the provision of person-centred dementia care for activities of daily living

Care provided by family members is not always consistent with the principles of person-centred dementia care (PCDC) and interventions to improve the quality of care are needed. A good foundation for the development of such interventions is provided by an understanding of how good and poor care practices are manifested in everyday care, and of the challenges to providing good quality care. Thirty people providing care to a spouse or partner with dementia were interviewed, and asked to describe examples of the care they provided for activities of daily living and the challenges to providing good quality care. Framework analysis was used to guide and interpret the interviews. Interpretation was guided by the VIPS conceptualisation of PCDC which incorporates the principles of Valuing, Individual, Perspective, and Social. The quality of care varied, and examples of good and poor care practices are described. The principles of PCDC were sometimes in conflict with one another and with other considerations, such as personal safety and the wellbeing of the carer. Participants were often faced with challenging decisions in which they had to weigh up these different issues. To be credible, guidance for carers need to reflect the complexity of the issues they face.

AN EXAMINATION OF STAFF SELF-EFFICACY MEASUREMENT IN THE PALLIATIVE CARE EDUCATION IN ASSISTED LIVING INTERVENTION

Abstract Advance care planning (ACP) is a necessary first step to meeting care preferences at the end of life and an important aspect of palliative care provision. ACP in assisted living (AL) is lacking for older adults living with dementia. A palliative care educational intervention found that only 12% of residents in AL living with dementia at baseline had documentation of (ACP) in their charts. Increased staff self-efficacy to have ACP discussions could potentially improve outcomes in ACP documentation. The current study is an NIH Stage 1b intervention using a sample of 23 nurses and administrators in 10 ALs to test if staff self-efficacy mediates the effects of increased documentation of ACP discussions. We estimated mediation models to examine whether staff self-efficacy (using a two-item scaled measure) mediates the relationship between the Palliative Care Education in Assisted Living intervention and ACP discussion rate. The PCEAL intervention had a positive impact on both staff self-efficacy and ACP discussion rate but the mediation results were not significant. In addition, an analysis of treatment fidelity ACP discussion checklists data showed the scores overall were lower than average (3.5 out of 7). We will discuss the differential scores between the self-reported increases from baseline to one-month (post-intervention) and lower than average observed treatment fidelity checklist scores of ACP Discussions by treatment staff and ways to improve the measurement of staff self-efficacy in future intervention research with staff who provide dementia care in assisted living settings.

PERCEIVED BURDEN ON OTHERS, LONELINESS, AND SUICIDE RISK IN CAREGIVERS

Abstract Caregiving can foster increased purpose and mastery, but also anxiety, depression, and suicide ideation. Mechanisms whereby caregiving impacts suicide risk in dementia caregivers are not well characterized. The Interpersonal Theory of Suicide posits that stressors such as caregiving increase suicide risk by producing feelings of not belong to valued relationships/groups (low belonging, loneliness) and like one is a burden on others (perceived burden). Given that caregivers by definition are caring for others, they may be protected against perceived burden. This presentation will examine the relevance of the Interpersonal Theory of Suicide to understanding mechanisms whereby caregiving may increase suicide risk, with a particular focus on perceived burden on others. Data come from 106 caregivers who reported both significant loneliness and caregiving stress (i.e., required inclusion characteristics for studies funded by Rochester Roybal Center for Social Ties & Aging Research). Subjects completed semi-structured interviews (Columbia Suicide Severity Rating Scale) and self-report measures of social disconnection (Interpersonal Needs Questionnaire), depressive symptoms, caregiving burden, and neuropsychiatric symptoms. Results indicate that 10% reported suicide ideation (past month) and 14% reported feeling like a burden on others (past month). Caregivers who reported perceived burden were 3.5 times more likely to report suicide ideation. Findings suggest that perceived burden is as least as common as suicide ideation, supporting relevance of the Interpersonal Theory. Additional analyses will examine characteristics of those who reported perceived burden to explore potential contributors to developing perceptions of burden despite providing dementia care.

ADVANCING CULTURALLY INCLUSIVE RESEARCH AND TOOLS IN ALZHEIMER’S DISEASE AND RELATED DEMENTIAS (ADRD)

Abstract Background and Significance Existing research underscores cultural norms’ influence on healthcare decisions but lacks depth in exploring their impact on dementia care transitions, critical for improving ADRD care outcomes. Research Aims include (1) Analyze interviews with dementia care providers and staff to better understand how cultural norms influence the decision-making processes for care transitions. (2) Explore methods used to facilitate inclusive and engaging discussions regarding care transitions. Methods Nested in the NIA-funded Decision Making in Alzheimer’s Research (DMAR) study, we examined interviews with 18 providers and staff on dementia care transitions. Prioritizing inclusivity, we leveraged the Alzheimer’s Disease Research Center (ADRC) registry and community partnerships coupled with tailored methods including diversifying the team and targeted outreach efforts. We’re employing a novel framework to analyze dementia care transitions, integrating societal and cultural aspects for nuanced understanding. This approach accounts for intergenerational culture, cognition perception, and care expectations, evolving to capture cultural nuances. Qualitative findings will be enriched with quantitative sentiment analysis, validated manually for accuracy. Key findings Novel framework will allow us to identify and analyze cultural norms affecting care transitions, as perceived by ADRD providers. Implications The study’s findings advocate for inclusive decision-making tools in ADRD care to accommodate diverse patient preferences. Future steps involve applying this framework to patients and caregivers and integrating findings into diverse settings involved in care decision-making. Funding statement: Funded in part by NIA grant #R01 AG066957 and the NLM T15 training grant #5T155LM007442-22. Content responsibility lies with authors, not representing NIH views.

ADVANCING CULTURALLY INCLUSIVE RESEARCH AND TOOLS IN ALZHEIMER’S DISEASE AND RELATED DEMENTIAS (ADRD)

Abstract Background and Significance Existing research underscores cultural norms’ influence on healthcare decisions but lacks depth in exploring their impact on dementia care transitions, critical for improving ADRD care outcomes. Research Aims include (1) Analyze interviews with dementia care providers and staff to better understand how cultural norms influence the decision-making processes for care transitions. (2) Explore methods used to facilitate inclusive and engaging discussions regarding care transitions. Methods Nested in the NIA-funded Decision Making in Alzheimer’s Research (DMAR) study, we examined interviews with 18 providers and staff on dementia care transitions. Prioritizing inclusivity, we leveraged the Alzheimer’s Disease Research Center (ADRC) registry and community partnerships coupled with tailored methods including diversifying the team and targeted outreach efforts. We’re employing a novel framework to analyze dementia care transitions, integrating societal and cultural aspects for nuanced understanding. This approach accounts for intergenerational culture, cognition perception, and care expectations, evolving to capture cultural nuances. Qualitative findings will be enriched with quantitative sentiment analysis, validated manually for accuracy. Key findings Novel framework will allow us to identify and analyze cultural norms affecting care transitions, as perceived by ADRD providers. Implications: The study’s findings advocate for inclusive decision-making tools in ADRD care to accommodate diverse patient preferences. Future steps involve applying this framework to patients and caregivers and integrating findings into diverse settings involved in care decision-making. Funding statement: Funded in part by NIA grant #R01 AG066957 and the NLM T15 training grant #5T155LM007442-22. Content responsibility lies with authors, not representing NIH views.

CO-CREATING RESOURCES TO RAISE AWARENESS OF RISKS OF GOING MISSING AMONG PERSONS WITH DEMENTIA

Abstract Persons living with dementia are at risk of getting lost and going missing due to wayfinding challenges. Yet, there are few accessible resources available that raise awareness of the risks of going missing and strategies to manage these risks. The purpose of this project was to develop engaging and informative learning resources for first responders, search and rescue personnel, persons living with dementia, care partners, and health and social care providers. Co-design and co-production approaches guided the development of these resources and were informed by reviews of the academic and grey literature, dialogue with persons with lived experiences, and content analysis of missing person cases. We produced three sets of resources: 1) nine dementia-friendly first responder videos for police and search and rescue personnel to enhance their awareness of dementia and risks of going missing; 2) a toolkit of strategies and resources for persons living with dementia and care partners to reduce the risks associated with getting lost and going missing; 3) eight personas and scenarios that depict contextual factors within missing events that can be utilized by service providers and the public in their interactions with persons living with dementia and care partners. All resources were reviewed by participants through interviews, focus groups, and written feedback to identify essential content and ensure accuracy, relevance, and comprehensibility. These sets of learning resources can elevate awareness and offer practical strategies to support persons living with dementia, care partners, first responders, and service providers.

CO-CREATING RESOURCES TO RAISE AWARENESS OF RISKS OF GOING MISSING AMONG PERSONS WITH DEMENTIA

Abstract Persons living with dementia are at risk of getting lost and going missing due to wayfinding challenges. Yet, there are few accessible resources available that raise awareness of the risks of going missing and strategies to manage these risks. The purpose of this project was to develop engaging and informative learning resources for first responders, search and rescue personnel, persons living with dementia, care partners, and health and social care providers. Co-design and co-production approaches guided the development of these resources and were informed by reviews of the academic and grey literature, dialogue with persons with lived experiences, and content analysis of missing person cases. We produced three sets of resources: 1) nine dementia-friendly first responder videos for police and search and rescue personnel to enhance their awareness of dementia and risks of going missing; 2) a toolkit of strategies and resources for persons living with dementia and care partners to reduce the risks associated with getting lost and going missing; 3) eight personas and scenarios that depict contextual factors within missing events that can be utilized by service providers and the public in their interactions with persons living with dementia and care partners. All resources were reviewed by participants through interviews, focus groups, and written feedback to identify essential content and ensure accuracy, relevance, and comprehensibility. These sets of learning resources can elevate awareness and offer practical strategies to support persons living with dementia, care partners, first responders, and service providers.

ADVANCING DATA COLLECTION AND SHARING FOR PERSON-CENTERED DEMENTIA CARE IN LOW-RESOURCE LONG-TERM CARE SETTINGS

Abstract Person-centered care (PCC) is essential to support people living with dementia and is a guiding principle in care services. Inequities in PCC and dementia care access persist in long-term care (LTC) settings, including poorer urban and rural communities, which have fewer healthcare resources. While growing evidence has demonstrated the consequences of LTC inequities, research is limited in understanding strategies to improve dementia care in low-resource settings. This symposium features four presentations from the Advancing Person-Centered Dementia Care in Low-Resource Contexts Project emphasizing unique challenges and opportunities for providing PCC in low-resource LTC settings from the perspectives of administrators, direct care staff, residents with dementia and their families. The first presentation reports results from a community-based, participatory research study in four LTC settings in federally designated medically underserved areas highlighting what matters when providing quality dementia care from the perspectives of LTC leaders, staff, residents and their families. The second presentation shares PCC strategies used by direct care workers stratified by length of tenure in the workforce. The third presentation examines factors related to measuring PCC quality with a specific focus on measurement in low-resource settings. The fourth presentation summarizes results from a series of design thinking workshops with family members, staff, and leaders in low-resource LTC settings to co-create processes for supporting high-quality PCC. This symposium reveals innovative strategies to provide dementia care and generates future directions for addressing inequities in low-resource LTC settings. Common Data Elements for International Research in Residential Long-term Care Interest Group Sponsored Symposium