Persons Living With Dementia Research Articles

Gaps in the System: Supporting People Living With Dementia and Their Caregivers

As individuals are living longer, the prevalence of older adults living with dementia and other complex health and social care needs is on the rise (Alzheimer’s Association, 2020; CIHI, 2020). Correspondingly, efforts to develop supportive programming and policies for persons living with dementia (PLWDs) are of paramount importance (CIHR, 2019). The challenges faced by PLWDs and other complex health and social needs are widely known (CIHR, 2019), however, a systematic understanding of how and if current and long-standing efforts are adequately meeting the needs of these individuals remains elusive. This research sought to understand how program administrators, decision makers, PLWD, and caregivers across five North American jurisdictions (British Columbia, Ontario, Newfoundland and Labrador, New York State, and Vermont) perceived specific dementia care programs and support services within their respective jurisdictions. We performed an inductive analysis of semi-structured interviews (N=37) and identified on-going care gaps experienced by participants. We present three main gaps: 1) disconnected and uncoordinated system infrastructure, 2) lack of comprehensive services to meet the diverse needs of PLWD and their caregivers, and 3) inconsistency in how dementia is understood; with associated perceived remedies. The results suggest that even when attempts to address the needs of PLWD and their caregivers are put in place there remains significant limitations of systems. The perspectives of decision makers, program administrators and individuals with lived experience offer unique insight into how these experiences may be improved to better support the complex needs of PLWD and their caregivers.

Exploring Dementia Care in an Acute Care Setting: Perspectives of Social Workers and Nurses

Older adults can benefit from using patient portals. Little is known whether the perceptions and use of patient portals differ among diverse older adult populations. The aim of this study was to assess the difference in perceived usability of patient portals, self-efficacy for using patient portals, and patient portal use between two adult samples aged 65 years or older. One sample was recruited from a health care system, including hospitals and clinics (n = 174), and the other sample was recruited from nationwide communities (n = 126). Conducting a secondary data analysis using two survey datasets, this study performed a series of linear and ordinal logistic regression analyses. The health care system sample had a higher mean number of chronic diseases and proportion of recent hospitalization than the community sample. The health care system sample showed higher perceived usability, self-efficacy, and usage frequency of patient portals compared to the community sample. eHealth literacy was a significant predictor of perceived usability and self-efficacy. Perceived usability was another significant predictor of self-efficacy. Self-efficacy and health condition variables significantly predicted the more frequent use of patient portals. Compared to the health care system sample, the relationship between perceived usability and use of patient portals was stronger and significant in the community sample. These findings suggest that approaches for promoting patient portal use should consider personal characteristics and health conditions of diverse older adult populations. Future research needs to focus on assessing the impact of using patient portals on older adults’ health care outcomes.

Gender-specific predictors of poor sleep quality and insomnia among caregivers of persons living with dementia

Caregiving for a person living with dementia (PLwD) may influence sleep patterns. Gaps exists about whether caregiver and PLwD factors impact sleep differentially based on caregivers’ gender. The aim of this secondary data analysis was to identify predictors of sleep quality and insomnia in a sample of caregivers, stratified by gender, participating in a randomized controlled trial of a psychoeducational intervention. Outcome measures were sleep quality (Pittsburgh Sleep Quality Index, PSQI) and insomnia (Insomnia Severity Index, ISI). Participants (n=261) also completed measures about caregivers’ perceived stress, burden, depression, and self-care, and PLwD’s behaviors (i.e., apathy, sleep disorders). Linear regression modeling was used to identify the overall predictors of poor sleep quality (PSQI > 5; 52% of the sample) and insomnia (ISI > 7; 41% of the sample). Caregivers were primarily female (70.5%), White (73.6%), mean age of 64.6 (±11.2) years, and typically caring for a spouse (65.9%). For male caregivers, predictors of poor sleep quality were assisting the PLwD with instrumental activities of daily living and PLwD neuropsychiatric symptoms (F=4.45, p<.001); while caregiver self-care and PLwD neuropsychiatric symptoms predicted insomnia (F=4.49, p<.001). For female caregivers, the predictors of poor sleep quality were caregiver depressive symptoms and burden, and frequency of PLwD behavioral problems (F=4.46, p<.001); however, only perceived stress predicted insomnia (F=4.32, p<.001). Various factors related to caregiving appear to be more important than others in predicting sleep outcomes of male/female caregivers. Health care professionals should acknowledge gender differences when designing and implementing programs and interventions to improve sleep.

Sleep, Activity, and Well-Being In Persons With Dementia: Findings From the Healthy Patterns Trial

Irregular sleep-wake patterns are common in persons living with dementia (PLWD), pose a great burden to caregivers, and are the principal causes of distress and institutionalization of PLWD. A growing body of research supports the importance of activity-based interventions to reduce the frequency and intensity of sleep wake disruption, reduce neuropsychiatric symptoms, and improve quality of life. To date, there are no studies linking sleep disruption and well-being with the nature and timing of activity. This session focuses on lessons learned from the Healthy Patterns Study - a randomized trial of a home-based activity intervention in 200 dyads of PLWD and their caregivers (NCT03682185). Session 1 focuses on the main findings from the clinical trial. Session 2 focuses on the cultural adaptation of the timed activity protocol to improve quality of life (QOL), improve sleep and reduce neuropsychiatric symptoms in older Latinos Session 3 describes the community outreach efforts used over a one-year period to recruit a diverse sample of PLWD and their caregivers for the Healthy Patterns trial. Session 4 examine the relationship between caregiver mastery and neuropsychiatric symptoms in PLWD. Together these findings highlight the complex role of sleep and wake activity in promoting well-being in persons with dementia.

Implementing Dementia Friendly Initiatives in the Community: Perceptions of Stakeholders in the USA and China

To address the exclusion of persons living with dementia (PWD), Dementia Friendly Initiatives (DFI) are being launched to build a friendly and supportive environment for PWD in the U.S.A, mainland China, and Taiwan. This study aims to identify the impact of DFI, the challenges DFI encountered, and strategies used to address such challenges within the COVID-19 context in American and Chinese societies. Individual interviews via Zoom with 9 stakeholders from the U.S.A, 8 from mainland China and one from Taiwan were transcribed for analyses. DFI have shown effectiveness in raising the public’s dementia awareness and engaging PWD in the community. COVID-19 pandemic posed the challenges of serving isolated PWD due to resources and attention shifted to COVID-19 prevention. Person-centered and technology-based means were used to deliver services for PWD during the pandemic. DFI in American and Chinese societies experienced similar sustainability challenges but showed resilience during the COVID-19 pandemic.

Tailored Music Listening to Improve Sleep in Older Adults With Dementia: A Randomized Clinical Trial

Sleep disturbances in persons living with dementia (PLWD) contribute to reduced well-being. Music has shown promise to improve sleep among older adults, but there is limited evidence of music interventions improving sleep specifically in PLWD. The purpose of this wait-list RCT was to examine the i) feasibility; ii) acceptability and iii) preliminary efficacy of tailored music listening intervention in community-dwelling PLWD and their caregivers (dyads). Thirty consented dyads out of 33 (91%) completed the RCT. Tailored music for sleep was feasible based on screening (26%), enrollment (89%), and recruitment (3 dyads/month) rates. The intervention was found acceptable, as evidenced by post-intervention interviews. Compared to controls, PLWD in the intervention group reported greater global sleep quality improvement post-intervention (PSQI mean change -0.08 vs -1.65; p=0.06). The results from this feasibility RCT have informed the development of a music mobile application that will be tested in a future clinical trial.

Touchscreen Technology to Improve Dementia Care Management for Older Adults Living in the Community

Chronic disease management challenges for persons living with dementia (PLWD) often includes difficulties communicating how their feeling or describing symptoms to caregivers. To address this issue, an interdisciplinary team is developing a touchscreen mobile technology that will allow the assessment of clinical information about the PLWD, such as sleep quality, appetite, pain level, and mood. The mobile technology also allows caregivers to share this information with providers in real-time from their homes. In the team’s effort to incorporate a graphic measure to assess mood into the technology, a literature review revealed no such measurement tool has been established and validated for assessment with PLWD. This study focused on developing a graphic clinical assessment tool that can be used to assess mood for PLWD and establishing the face and content validity for this assessment tool. A team that included multidisciplinary clinical experts and a graphic artist designed a series of pictures of facial expressions and body language depicting a continuum of mood states (i.e., happy through depressed). The research team consulted with existing artistic depictions of sadness expression, including medical illustrations depicting depression. Multiple iterations have resulted in a series of images that represent moods from happy to very sad. The team considered a number of factors in developing the images including gender, ethnicity, and race. Consensus on the construct validity was achieved by the expert clinical panel. Details of a follow-up study to evaluate construct validity will be presented.

Bedtime Salivary Cortisol and Depressive Symptoms in Older Adults Living With Dementia

The dysregulation of cortisol has been associated with depressive symptoms in older adults. To date, no prospective longitudinal studies have examined whether salivary cortisol is a risk factor for depressive symptoms in persons living with dementia (PLWD). With a sample of 123 PLWD, baseline salivary cortisol was collected at awaking, 30 minutes after awaking, and bedtime. Depressive symptoms were assessed at baseline and the four-week follow-up. Cortisol indicator were centered. Baseline bedtime cortisol level was significantly associated with depressive symptoms in a curvature style while controlling age, gender, and baseline depressive symptoms (β=3.76 for linear term and β=-1.57 for quadratic term, both ps<0.04). No other baseline cortisol measures were significant prospective predictors. Our results suggest the bedtime cortisol was a significant risk factor for depressive symptoms in PLWD. These findings suggest that bedtime cortisol may play a role in the etiology of depressive symptoms in PLWD.

An Interdisciplinary Home-Based Medical Care Program to Reach Homebound Adults Living With Dementia

The COVID pandemic has impacted access to care, particularly for older, homebound persons living with dementia (PwD). At the beginning of the pandemic, our interdisciplinary team introduced a home-based medical care program (HBMC) to address chronically ill and homebound PwD and caregivers’ needs to promote aging in place. The purpose of this presentation is to describe PwD and caregiver service use and experiences with Virginia at Home (VaH) HBMC during the pandemic. All PwD participating in VaH program are offered home telehealth access with necessary devices. We will discuss telehealth access and use and dyad-care provider communication across up to 20 dyads to facilitate continuity of care. These data are supplemented by qualitative interviews with dyads presenting needs, preferences, and experiences accessing and using services across the first six months of program launch. We will conclude with a discussion of participant-informed program alterations to facilitate optimal overall care and outcomes.

Chronobiological Factors Related to Sleep and Neuropsychiatric Symptoms in Persons Living With Dementia

Circadian rhythm disturbances (CRD) are commonly seen in people living with dementia. A clear understanding of the role of CRD in dementia etiology will be beneficial by exploring the exogenous factors (externally influence the duration of sleep hours, such as light/dark cycles) and endogenous factors (internal biological rhythm, such as diurnal cortisol pattern). This symposium will apply a chronobiological approach to study exogenous and endogenous factors that influence circadian rhythm and their effects on sleep and neuropsychiatric symptoms in persons living with dementia (PLWD). Four paper presentations will use secondary data analysis of data from the Healthy Patterns Clinical Trial (NCT03682185), a randomized controlled trial of a home-based activity intervention designed to improve circadian rhythm disorders in PLWD. We will first describe the circadian rhythm pattern reflected by endogenous factors (salivary cortisol), then examine salivary cortisol (endogenous) and white light intensity (exogenous) and on subjective sleep and neuropsychiatric symptoms (including depression) in PLWD, respectively. In session 1, we will present cortisol diurnal rhythm pattern in PLWD using a cross-sectional design. In session 2, we will discuss the relationship between salivary cortisol indicators and depressive symptoms. In session 3, we focus on the association between diurnal cortisol slope and neuropsychiatric symptoms using the baseline data. In session 4, we describe the association between evening white light exposure and subjective sleep. The discussant will describe how these findings build on our understanding the nature of circadian rhythm disturbance in dementia and inform future research and treatment approaches.

Diagnosis of Behavioral Symptoms of Dementia and CNS-Active Drug Use Among Diverse Persons Living With Dementia

Approximately 90% of persons living with dementia (PLWD) experience behavioral and psychological symptoms of dementia (BPSD). Studies demonstrated high use of central nervous system (CNS) active drugs in nursing homes; one recent study documented high use among community-dwelling PLWD. Racial/ethnic disparities in BPSD diagnosis and CNS-active drug use, however, are unknown. We quantified disparities in BPSD diagnoses and CNS-active drug use using 100% Medicare Part A and B claims, 2017-2019, and Part D, 2018-2019. Beneficiaries were ages 65 and older in 2017, community-dwelling, and had a dementia diagnosis (n=801,597). We estimated models of CNS-active drug use to quantify racial/ethnic differences adjusting for confounders. Among PLWD, 66% had a BPSD diagnosis and 65% were taking a CNS-acting drug. Asians/Pacific Islanders were less likely to have a BPSD diagnosis (55%) than other groups, particularly affective diagnoses (40%). Whites were most likely to have any diagnosis (67%). Blacks were most likely to have hyperactivity diagnoses (7%). Antidepressants were most commonly used drug class (44%). Thirteen percent used an antipsychotic. Models adjusted for age, sex, comorbid conditions, dual-eligibility and BPSD diagnoses, showed non-Whites were less likely to use any CNS-active drug than Whites, but Blacks and Hispanics were slightly more likely to use antipsychotics. We found racial/ethnic differences in BPSD diagnoses and CNS-active drug use. Whether these disparities are due to differences in BPSD symptoms, health-care access or care-seeking remains an important question. Further study of disparity in outcomes associated with use will inform risk and benefit of CNS-active drugs use among PLWD.

Technology Innovations in Dementia Care: Improvements in Functional Assessments Through Background Sensing

Technological innovations are becoming commonplace in research among persons living with dementia (PLWD) and their caregivers. However, few studies attempt to validate technology’s ability to appropriately monitor functional assessment in dementia care research. Bringing together industry, academia, and health care, we demonstrate the feasibility of using a novel in-situ sensor system to continuously and accurately assess daily functions for PWLDs in home or assisted care settings. Phase1 revealed a high accuracy (~85%) of detecting and classifying ADLs between sensors and human loggers across 26 defined activities. Phase 2, which will target 140 PLWDs, has already demonstrated the value of such sensors in detecting safety concerns (e.g., no heat). Technology-driven research for PLWD and their caregivers have practical applications for assessing diverse forms of functional assessment and environmental conditions which can improve measurement precision over time and space and the ability to better tailor care plans for PLWDs and their caregivers.

Collection of Data on Persons Living With Dementia Who Go Missing: First Responder Perspectives

While it is commonly cited that 60% of persons living with dementia (PLWD) wander, it is unclear whether this number reflects global contexts. Population aging has created a pressing need for the development of programs to mitigate the risks of PLWD from getting lost and going missing. Such programs would require a national strategy for the collection and integration of data on missing incidents involving this population. This study is a first step to inform such a strategy. The purposes were to: 1) identify approaches to data collection on missing persons incidents involving PLWD among Canadian police and search and rescue (SAR) organizations; 2) describe the foreseeable challenges associated with developing a national data collection strategy. We used generic qualitative description to generate data with fifteen key informants. Virtual semi-structured interviews were completed and transcribed verbatim. Content analysis and trustworthiness strategies guided analysis and rigor. Our findings indicate that police and SAR organizations collect a multitude of data pertaining to missing incidents involving PLWD. However, there is a lack of standardization in data collection, entry and analysis. Privacy legislation, limited resources, and incompatible data management systems pose challenges to data sharing and interoperability. Underreporting of missing incidents to police results in an underestimation of missing incidents. An intersectoral, uniform approach to data collection would enable the storage, analysis and comparison of national data. Accurate data on critical wandering can inform prevention, search strategies, resource allocation and effectiveness of programs.

Using Life Story Techniques with Diverse Communities: Lessons Learned from a Focus Group Study

Providing high quality, cost-effective dementia care remains a major health challenge. Life story work, used in residential care settings, helps engage persons living with dementia (PWD) at a low cost with minimal staff burden. LifeBio, one such intervention, is designed to elicit life history data and care preference information through comprehensive life story interviews. LifeBio Memory, an adaptation of LifeBio, utilizes novel speech-to-text technology to process life story data more efficiently. Seven focus groups were conducted to evaluate the acceptability and feasibility of LifeBio Memory. Three types of focus groups were held (n=35) and audio recorded: 1) One group of early-stage PWDs (n=5); 2) Two groups of current and former users of original LifeBio (n = 12); and 3) Four groups of residential care staff and directors (n=18). Sessions were transcribed and thematic analyses were conducted. Findings indicated high levels of acceptability and feasibility of LifeBio Memory. Further, a secondary theme emerged signaling the need to prioritize the emotional safety of PWDs participating in life story work. This poster will discuss: 1) the life story interview process, 2) identifying PWDs who would most benefit from a life story program, 3) involving family and staff care partners to identify sensitive topics, 4) interview question design, selection and order, and 5) expanding life story work across diverse communities. Discussion will highlight the importance of protecting the emotional well-being of marginalized communities by identifying potential underlying traumas that could impact the safe delivery of otherwise effective life story interventions.

Virtual Interdisciplinary Collaboration in Statewide Implementation of the MIND at Home Dementia Care Program

MIND at Home, a well-researched holistic, family-centered dementia care coordination program, provides collaborative support to community-dwelling persons living with dementia (PLWD) and their informal care partners (CP). Through comprehensive home-based assessment of 13 memory-care domains covering PLWD and CPs, individualized care plans are created, implemented, monitored, and revised over the course of the illness. Non-clinical Memory Care Coordinators (MCCs) working with an interdisciplinary team provide education and coaching to PLWD and their identified CP, and serve as a critical liaison and resource and between families, medical professional, and formal and informal community resources. This paper will describe a statewide pilot implementation of the program within a health plan across diverse sites in Texas and will present qualitative and quantitative descriptions of a key component of the program's effective translation to practice, the virtual collaborative case-based learning sessions. Health plan teams completed online interactive training modules and an intensive in-person case-based training with the Johns Hopkins team prior to program launch, and then engaged in weekly, hour-long virtual collaborative sessions that included health plan teams (site-based field teams, health plan clinical supervisory and specialty personnel [RNs, pharmacists, a geriatric psychiatrist, behavioral health specialists] and Johns Hopkins MIND program experts and geriatric psychiatrists. To date, the program has enrolled 350 health plan members, conducted 65 virtual collaborative sessions, and provided 423 CME/CEU units to team members. We will provide an overview of virtual collaborative session structure, participant contributions and discussion topics, case complexity, as well as didactic learning topics covered.

Falling Between the Cracks: Experiences of Black Dementia Caregivers Navigating U.S. Health Systems

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers’ experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States (U.S.) to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were developed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is “broken.” Gaps in the health system can lead to people [as one caregiver passionately expressed] “falling between the cracks,” in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a “person of color” contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black patients with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.

Salivary Cortisol Patterns in People Living With Dementia

Salivary cortisol has a well-documented circadian pattern in older adults. Yet, the pattern of salivary cortisol in persons living with dementia (PLWD) due to circadian rhythm disturbances is unknown. This study examined diurnal salivary cortisol patterns in 176 PLWD (mean age 73.6±8.8, 33.3% male, clinical dementia rating >=0.5) by collecting saliva at waking (AM1), 30 minutes after waking (AM2) and bedtime (PM) over two consecutive days. Cortisol awakening response (CAR) was calculated as the change between AM2 and AM1 cortisol levels. The mean baseline salivary cortisol levels (ug/dl) were 0.35 (SD:0.3) at AM1, 0.40 (SD:0.39) at AM2, and 0.19 (SD:0.4) at PM. On average, cortisol levels decreased from morning to evening, with 58% exhibiting a positive CAR (mean 0.05; SD:0.34). There were no significant associations between cortisol levels with age, sex, obesity, and comorbidities. The findings demonstrated that diurnal cortisol rhythms are maintained in PLWD with a flattened CAR.

Effective Recruitment Strategies for Community-Dwelling Persons Living With Dementia and Their Caregivers

Recruitment of diverse community-dwelling persons living with dementia (PLWD) and their caregivers (dyads) into randomized controlled trials (RCT) is challenging, time consuming and expensive. This presentation will describe community outreach efforts used over a one-year period to recruit dyads of PLWD and their caregivers in Healthy Patterns RCT. Community outreach yielded 296 inquiries, such that people expressed interest in joining the study. Of the 296 inquiries, almost all (95.6%) identified as African American, and 91(30.7%) consented to join the study. Presentations at senior centers yielded the highest number of inquiries (n=148), followed by staff presence at various community events such as health fairs and senior galas (n=145) and referrals (n=3). We found that community outreach was an effective recruitment strategy to generate inquiries among diverse PLWD and their caregivers to enroll in Healthy Patterns. We will discuss these strategies and provide suggestions for recruiting diverse dyads into clinical trials.

Relationships Between Salivary Cortisol Slope and Neuropsychiatric Symptoms in Persons Living With Dementia

While a flatter diurnal cortisol slope has been related to poor health outcomes in healthy populations, little is known about this relationship in persons living with dementia (PLWD). The purpose of this study was to examine the association between diurnalcortisol slope and neuropsychiatric symptoms in PLWD. Secondary data analysis was conducted using baseline data from the Healthy Patterns Study (N=168). Diurnal cortisol slope was calculated using the difference between changes in salivary cortisol from 30 minutes after awakening to bedtime. Spearman rho coefficients were used. Flatter cortisol slope was associated with the presence of symptoms of agitation (r=-0.191, p=0.013) and disinhibition (r=-0.168, p=0.03). Steeper cortisol slope was related to a more severe level of anxiety symptoms (r=0.36, p=0.009) and higher frequency of insomnia (r=0.292, p=0.011). We found that cortisol slope was associated with neuropsychiatric symptoms in PLWD. Future research is needed to examine the mechanisms underlying the relationships.

A Systematic Review of Self-Care Interventions for African American Family Caregivers

African Americans (AA) family caregivers provide the bulk of unpaid care to persons living with dementia (PLWD). This role leaves little time for the adoption of self-care behaviors—critical to the prevention and management of chronic diseases. In this systematic review, we appraise caregiver self-care interventions that include AA caregivers of PLWD. PubMed, CINAHL, PsycINFO, Cochrane, and Embase databases were searched. Terms included AA/Black, self-care, caregiving, lifestyle, intervention, psychological stress, and faith/community. We initially found 250 references and after application of exclusion criteria and removal of redundant references, 18 articles were analyzed. Most interventions focused on impacting levels of caregiver burden, depression, physical activity, anxiety, or wellbeing. Psychoeducation, physical activity, and spiritually-focused interventions were most effective in improving outcomes in caregivers. Future studies should examine the impact of interventions on the prevention and management of chronic disease in AA caregivers of PLWD.