Persons Living With Dementia Research Articles

Creating a measure of community level dementia‐friendliness in faith communities

AbstractBackgroundAs the prevalence of dementia rises, modifying built and social environments of persons living with dementia (PLWD) becomes increasingly essential. Although there is a call to rigorously evaluate dementia‐friendly community initiatives, no known comprehensive evaluation tools exist to assess small communities such as churches and community centers. Therefore, we developed a person‐centered Dementia‐Friendly Community Assessment tool.MethodsThis tool consists of new and validated scales to assess the level of dementia‐friendliness among churches enrolled in a dementia‐friendly congregation program based in African American communities. An initial draft of the theory‐informed survey instrument was given to stakeholder groups (church leaders, care partners, PLWD, and the Alter advisory board) with the goal of gathering feedback on domains included in the tool, as well as general wording and appropriateness. After focus group recordings were transcribed, the team made revisions and administered the survey to 10 stakeholders (church leaders, care partners, PLWD, and lay congregants) to gather feedback on the digital version of the survey, proposed changes to the tool, and thoughts on implementation aids and barriers.ResultsOverall, the tool was well received by participants, with most participants indicating the tool’s resulting scores would be useful for their community. Additionally, the tool’s content prompted many to share personal experiences of living with dementia or caregiving for PLWD, indicating that future use of this tool may provide a starting point to address stigma.ConclusionNext steps include piloting the survey with broad church membership, and our aim is to enable programs to quantify their dementia‐friendly community initiatives.

Impact on End‐of‐life Planning of a Care Coordination Program for persons living with dementia

AbstractBackgroundAlzheimer’s disease and related dementias (ADRD) afflict over five million persons in the U.S., and persons living with dementia (PLWD) have been shown to receive poor quality care and have worse health outcomes compared to those without ADRD. We developed a population‐based dementia care management program to support the care of PWLD in a large U.S. healthcare system.MethodsIn a large multi‐specialty medical group practice, we identified patients enrolled in a value‐based insurance program (Medicare Advantage) using the EPIC electronic health record (EHR), and eligible patients were invited to enroll in the CARES dementia care program. Patients were eligible if they had an ICD‐10 diagnosis of ADRD in the EHR problem list and/or past medical history, or currently taking an FDA‐approved medication for ADRD. We additionally included patients with ADRD who have a primary care provider in the affiliated academic health system. During an in‐person intake visit, a study‐assigned nurse practitioner (NP) engaged in advance care planning discussion with patients and caregivers and completed advance directives (AD) and Physician Order for Life Sustaining Treatment (POLST). We assessed the rate of completion of the AD and POLST pre‐program and post‐enrollment.ResultsWe enrolled 195 patients in the CARES dementia care program. After enrollment, participants increased completion of advanced directives from 27.7% to 30.8% (p = 0.25) and the POLST from 13.3% to 23.1% (p = 0.006). Of the POLST forms completed, 70.7% indicated that the patient was ‘do not attempt resuscitation’ (DNAR) (65.2% of those who completed the POLST pre‐program, 77.8% for those who completed after enrollment, p = 0.19). Among those who completed the POLST, 55.0% indicated selective medical interventions (63.6% pre‐program, 47.1% post‐enrollment, p = 0.15), 40.0% wanted full medical interventions (31.8% pre‐program, 52.9% post‐enrollment, p = 0.10), and 5.0% wanted comfort‐focused interventions (4.5% pre‐program, 5.9% post‐enrollment, p = 0.43). Trial period of nutritional supports was indicated by 69.2% (72.7% pre‐program, 64.7% post‐enrollment, p = 0.28), while 28.2% wanted no artificial treatment (27.2% pre‐program, 29.4% post‐enrollment, p = 0.45), and 2.6% wanted long‐term nutritional support (0% pre‐program, 5.9% post‐enrollment, p = 0.13).ConclusionA dementia care coordination program shows signs of increased completion of end‐of‐life planning, with the majority choosing ‘do not attempt resuscitation’ (DNAR).

Identification of Persons Living with Dementia Using the Electronic Health Record

AbstractBackgroundAlzheimer’s disease and related dementias (ADRD) are underdiagnosed in the primary care setting. Proactive screening for cognitive impairment and subsequent evaluation and diagnosis of patients who screen positive are not routinely and reliably performed. As a result, identification of persons living with dementia (PLWD) for enrollment in clinical programs, clinical trials, and research studies can be challenging. The electronic health record (EHR) represents a potentially viable tool to efficiently and accurate identify PLWD.MethodsIn a large academic health care system in the U.S., we performed an EPIC EHR search for PLWD with the intent of enrolling them in an outpatient dementia care management program. The EHR algorithm used the following criteria for dementia: (1) an ICD‐10 dementia diagnosis in the problem list or past medical history or (2) an FDA‐approved drug on their active medication list. We performed chart review for patients who were identified to have potential dementia using this algorithm to confirm dementia diagnosis is documented in clinical notes.ResultsA total of 985 patients were identified by EHR criteria as potentially having dementia. After chart review, 747 (75.8%) were confirmed to have dementia documented in their clinical history and progress notes. One hundred thirty (13.2%) did not have a confirmed dementia diagnosis, 58 (5.9%) had an incomplete dementia evaluation, and 50 (5.0%) had only mild cognitive impairment. In addition, 55 (5.6%) were deceased.ConclusionWe found that an EHR algorithm can identify patients with dementia in a health plan population. This model may be a useful tool for a focused recruitment of potential participants in clinical trials, research studies, and clinical programs.

Assessing the psychological impact of COVID‐19 on rural informal caregivers of persons living with dementia in the United States

AbstractBackgroundInformal caregivers of persons living with dementia (PLWD) in rural areas of the United States (U.S.) are a vulnerable population. During the COVID‐19 pandemic, rural communities experienced heightened disparities in social services, healthcare[1], and mortality[2], including suicides[3,4]. Yet, how the pandemic affected rural caregivers is largely unknown. We examined predictors of depression and stress, as well as self‐perceived impact of COVID‐19, among rural caregivers of PLWD.MethodAs part of the Rural Dementia Caregiver Project[5], U.S. rural informal caregivers of PLWD completed an online survey from March 1, 2021, through April 30, 2022. We conducted a mixed‐method analysis of responses to validated scales and an open‐ended question. Caregiver outcome measures include depressive symptoms[6] and stress[7]. Predictors include caregiver COVID‐19 limitations[8], loneliness[9], social isolation[10], and burden[11]. Linear regression analyses examined independent associations of predictors with outcomes, adjusting for age, sex, and caregiving hours spent per week. We completed thematic analysis of responses to the question, “How has COVID impacted your life as a caregiver?” to contextualize quantitative findings.ResultA total of 152 rural caregivers completed the survey, and of those 127 responded the open‐ended question. Most (81%) caregivers were aged 50 years and older, and 82% were female. Factors positively associated with caregiver depressive symptoms were loneliness (β = 0.72, p<0.0001) and burden (β = 3.18, p<0.01). Factors positively associated with caregiver stress were loneliness (β = 0.22, p<0.05) and burden (β = 1.28, p<0.05). COVID‐19 limitations and social isolation were not associated with depressive symptoms or stress. Qualitative results confirmed quantitative results (e.g., loneliness, increased burden) and revealed other aspects of the psychosocial context of pandemic caregivers including both negative (e.g., worry, decline in care partner health) and positive (e.g., increased time with care partner) factors (Table 1).ConclusionWe found that loneliness and care burden contributed to the psychological distress of rural caregivers of PLWD during the COVID‐19 pandemic, and identified other contextual factors of their experiences. The pandemic exacerbated existing vulnerabilities and exposed new ones. Rural caregivers should receive increased support to address the psychosocial stressors and burdens endured during the current pandemic and future catastrophic events.

A Dyadic Behavioral Sleep Intervention Program for Persons Living With Dementia and Their Family Caregivers: A Pilot Randomized Controlled Trial

AbstractBackgroundUntreated sleep problems in persons living with dementia (PLWD) and their caregivers impact health outcomes of both individuals and impair quality of care for caregivers. This study pilot tested preliminary effects of a dyadic sleep intervention program among this group.MethodThirty PLWD/caregiver dyads were randomized to a 5‐session treatment (n = 15 dyads) or a similarly structured information‐only control group (n = 15 dyads) via in‐person or video‐telehealth. Treatment was a manual‐based program incorporating key components of cognitive behavioral therapy for insomnia (CBTI), daily light exposure and walking, and a problem‐solving approach for dementia‐related behaviors and caregiving challenges. Sleep outcomes included actigraphy‐measured sleep efficiency (SE) and total awake time (TWT) at night for dyads, and Pittsburgh Sleep Quality Index (PSQI) for caregivers. Outcomes were measured at baseline, post‐treatment, and 3‐months follow‐up (main outcome time point). Recommendation adherence in the treatment group was computed and a 2 (group) by 3 (time) mixed model analysis of variance was used to test the treatment effects (p<0.20 as the threshold).ResultTwo dyads in treatment and one control dyad did not complete all five sessions. Of 13 dyads who completed all sessions of the treatment program, average % days that the dyads met their sleep schedules were 76% bedtime and 83% get‐up time for PLWD and 81% bedtime and 68% get‐up time for caregivers. From baseline to 3‐month follow‐up, SE increased by 3.2% more for PLWD in the treatment group (n = 9) compared to control (n = 9, p = 0.48) and by 3.7% more for caregivers in the treatment group (n = 12) compared to control (n = 9, p = 0.17). TWT also reduced by 19 minutes more for PLWD and 14 minutes more for caregivers in the treatment group compared to control at the 3‐month follow‐up although this was not statistically significant. Caregivers in treatment also showed non‐significant improvement on the PSQI (p>0.20).ConclusionA dyadic approach to sleep improvement showed evidence of benefit among PLWD and caregivers. A larger study is needed to fully evaluate these effects and compare in‐person to telehealth modalities.

A generalizable unsupervised graph‐based approach for anomalous event detection in people living with dementia

AbstractBackgroundSensor‐based remote health monitoring of persons living with dementia (PLwD) can be used to monitor the progression of their condition with minimal intrusion. This helps minimize preventable hospital admissions, while allowing researchers to improve their understanding of dementia. Existing approaches for detecting anomalies in activity and behavior in PLwD are challenged by data noise, drift, label reliance, and poor explainability and generalizability due to wide inter‐individual variability.MethodWe propose and evaluate a solution that combines graph learning with the Contextual Matrix Profile (CMP), an ultra‐fast distance‐based discord detection technique. Daily household movement data collected via passive infrared sensors are used to generate multivariate CMP. This is encoded as a set of time‐evolving graphs. A self‐supervised graph model is trained to separate graphs by distance, so discordant time blocks show up as anomalous graphs. Differences between successive graph embeddings are subject to moving average thresholding to detect anomaly. We compare our method to four state‐of‐the‐art outlier detection algorithms, and demonstrate the generalizability of a distance‐based graph model trained on one cohort, to anomaly detection in unseen individuals.ResultGraph‐enhanced CMP models outperform state‐of‐the‐art algorithms, yielding 74% recall with a 5.7% alert rate and 88% household‐level validity when evaluated on 13,426 days’ data from 42 households with 145 agitation events, collected by the UK Dementia Research Institute between August 2019 and April 2022. Similar results are obtained for a 23‐participant, 5284‐day Falls cohort: 72% recall, 5.85% alert rate and 83% household‐level validity. Pretrained models yield similarly high performance for unseen households in both cohorts. Experiments on the publicly available PAMAP dataset reveal superior top‐k alert performance. Explainability is achieved via the CMP that is the source for graphs.ConclusionWe address the need for generalizable anomaly detection models for multivariate time series sensor data in remote health monitoring. While the CMP allows the ability to denoise and detect patterns at a household level, a graph model constructed in the distance space is generalizable across households. With higher sensitivity, fewer alerts than state‐of‐the‐art methods and inherent explainability, graph‐CMP models offer a clinically meaningful unsupervised anomaly detection technique for dementia and beyond.

Managing Your Own Wellness (MYOW): Intervention for improving wellness through dementia care partner’s self‐care

AbstractBackgroundCaring for a person living with dementia (PLWD) can be a stressful and straining experience for family/friend care partners (CP), often leading to an increased risk for adverse psychosocial and health outcomes (e.g., depression, anxiety, mortality). Engaging in self‐care can reduce these risks and improve health. Yet, comprehensive tools that measure self‐care as a dynamic concept in the context of dementia caregiving do not exist. “Managing Your Own Wellness” [MYOW] checklist was created and validated to capture dementia CP self‐care behaviors and to inform the development of a brief, tailored person‐centered intervention. The study’s objective was to pilot test this intervention, with the ultimate goal of informing a new generation of CP interventions that address the complex and wide range of self‐care needs.MethodNineteen primary dementia CPs completed the study and participated in the baseline visit to establish a self‐care goal, three weekly check‐in coaching visits with the interventionist, and a final exit interview at week four. Measures at baseline, week four, and week 12 included MYOW, well‐being scale, single item tool for perceived strain and stress, and screening tools for depression and anxiety. Participants completed daily tracking forms to report their engagement and perception of progress in their selected self‐care activity. All interviews were transcribed and coded using thematic content analysis. Study measures were evaluated using correlation analyses.ResultsCP’s increased engagement in self‐care activities and improved sense of well‐being were captured by quantitative measures. Qualitative analysis revealed themes involving a change in relationship dynamics, evolution of the sense of self, shift in internal personal perspective (acceptance) and its effects on CP behaviors (increased patience, less frustration), and perception of PLWD interactions (more cooperative).ConclusionMYOW intervention had high acceptability and demonstrated high potential for broad dissemination. CP engaged in developing and following through on personalized self‐care goals and in tracking their progress. The impact of self‐care is dynamic and multi‐faceted. Focusing on brief daily wellness‐related activities has mutual benefits for CP and PLWD. Future research should be focused on further simplifying intervention protocols and measures and evaluating the intervention with a larger diverse sample of CP.

When One Call Isn’t Enough: A Comparison of Alzheimer’s Association Helpline Callers

AbstractBackgroundFamily care partners of persons living with dementia (PLWD) have limited support and resources and experience high levels of stress and burden. Prior research has demonstrated that one call to the Alzheimer’s Association’s Helpline benefitted 80% of callers following a single call. However, some care partners need more support than a single call.MethodThe aim of this study was to evaluate the efficacy of offering up to two callbacks after an initial call to the Helpline. Study participants were Helpline callers who were asked if they sought additional calls due no progress towards implementing recommended action steps after a single Helpline call. Outcomes were compared at 2, 4 and 6 weeks after baseline and included PROMIS measures of self‐efficacy.ResultOf 2504 participants, 79.92% were female, 73% were white, age = 60.31 years (± 12.59), 85.06% bachelor’s degree+, 64.42% lived with PLWD. No statistical difference were noted in demographics between single vs. +1 callers. However, +1 callers scored lower on two PROMIS items: upset (p < 0.0171) and ability to bounce back (p < 0.017). After one call, those with +1 call improved on the total PROMIS (p < 0.0001), as well as the following items: negative feelings < 0.001), stress (p < 0.0009), upset (p < 0.0145), discouragement (p < 0.006), and distress (p < 0.0001). From the first call to the second call, callers improved on the total score (p < 0.0065), upset (p < 0.0349) and ability to relax (p < 0.0213) items. Following second call, participants improved on the overall survey score (p < 0.004), as well as the following items: stress (p < 0.016), upset (p < 0.03), discouragement (p < 0.04), distress (p < 0.0066), and ability to relax (p < 0.02).ConclusionFurther research is indicated to understand the support needs of care partners that can benefit from more than one call to a tele support program.

Using the RE‐AIM framework to help implement an educational intervention for improving the care of persons with behavioral and psychological symptoms of dementia in primary care

AbstractApproximately 90% of persons living with dementia (PLWD) experience behavioral and psychological symptoms of dementia (BPSD) over the course of their illness, including aggression, psychosis, and depression. With a growing lack of access to specialty geriatric care, most people with BPSD will receive care from their primary care providers. Many primary care practices lack knowledge, self‐efficacy, and established pathways to expert advice for managing these complex behaviors. We have developed a comprehensive educational intervention for primary care providers and clinical staff to help them better address BPSD. The educational intervention combines two complementary approaches: the academic detailing model and the DICE ApproachTM (DICE). In a recent pilot with two primary‐care integrated memory clinic teams, we noted improvements in provider knowledge and clinical staff self‐efficacy and comfort in BPSD and dementia care after 6‐months of participation in academic detailing and DICE training. In our current study, we use the RE‐AIM framework to guide the implementation planning for our educational intervention for primary care providers and clinical staff to help them better address BPSD. The RE‐AIM framework is a widely used tool for evaluating the implementation of health interventions to ensure they are both effective and sustainable. Twenty semi‐structured interviews will be completed among providers practicing in one of two primary care integrated memory clinics who participated in the pilot program (champions) and among their generalist primary care colleagues with no to minimal program experiences (novices), in one urban and one rural healthcare system. The RE‐AIM framework informed the design of our semi‐structured interviews and will help to frame content analysis for identifying potential barriers to implementation, for scale‐up to generalist primary care teams. Five interviews have been completed to date. Qualitative analyses are also underway, and results will be presented. Findings from this study will be used to develop an implementation plan for a future randomized controlled trial to measure the effectiveness of this intervention on health outcomes in PLWD and BPSD.

Factors Associated With Dementia‐Related Behaviors Among Caregivers Experiencing Poor Sleep

AbstractBackgroundNeuropsychiatric symptoms of dementia are common and have the potential to negatively impact the physical and mental health of family caregivers, hindering their ability to provide care. Such impact may be worse among caregivers experiencing poor sleep. This study aimed to explore factors associated with the frequency of and caregivers’ distress to dementia‐related problematic behaviors.MethodThis was a cross‐sectional study, using data from a clinical trial of dyadic sleep intervention for persons living with dementia (PLWD) and their family caregivers. Dementia‐related behaviors were measured using a 24‐item, Revised Memory and Behavioral Problems Checklist (RMBPC): total scores of frequencies and caregivers’ distress; scores for three subscales (memory‐related, depression, and disruptive behaviors). Caregiver‐related variables included demographic background, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving (PAC), Pittsburgh Sleep Quality Index (PSQI), and Center for Epidemiological Studies of Depression (CESD). Patient‐related variables included activities of daily living (ADLs), instrumental ADLs (IADLs), and Mini‐Mental State Examination (MMSE) scores. A total of 47 dyads were included in the analysis (caregivers: n = 29 spouses, n = 17 non‐spouses; 40% Whites). Pearson correlation analyses were conducted.ResultHigher ZBI and CESD scores were significantly associated with higher RMBPC frequency total (r = 0.41, r = 0.48, respectively; p<0.01) and caregiver distress total scores (r = 0.58, r = 0.43, respectively; p<0.01). Lower PAC (r = ‐0.31, p = 0.04) and higher MMSE scores (r = 0.37, p = 0.03) were also associated with higher caregiver distress total scores. ZBI and CESD scores were associated with RMBPC‐depression subscale scores (frequency/caregiver distress). There were positive associations between CESD and MMSE with RMBPC‐disruptive behaviors (frequency), and ZBI and PAC scores with RMBPC‐disruptive behaviors (caregiver distress). No patient or caregiver‐related factors were associated with RMBPC‐memory subscale scores. There was no significant association between PSQI scores and RMBPC total/subscale scores. Patient factors were not significantly associated with RMBPC frequency total or caregiver distress total scores.ConclusionDementia‐related problems, particularly depressive symptoms and disruptive behaviors of PLWD are associated with both positive and negative aspects of caregiving. Future studies will need to further examine how each RMBPC subscale of behavior contributes to caregiver burden or perceived caregiving experiences among family caregivers.

Impact of Care-Recipient Relationship Type on Quality of Life in Community-Dwelling Older Adults With Dementia Over Time.

Maintaining quality of life (QoL) has been identified as the primary goal of care services for person living with dementia (PLWD). A secondary analysis was conducted on five rounds of the National Health and Aging Trends Study (NHATS) over 4years. A generalized estimating equation (GEE) was used to examine the prediction of relationship type on older adults' QoL through four domains: mental health, general health, functional limitations, and pain. older adults cared for by an adult-child or multiple caregivers predicted increased risk for functional limitations after adjustment for their socio-demographic and dementia status (IRR = 1.53, CI [1.26, 1.86]; IRR = 1.36, CI [1.14, 1.61], respectively). The interaction between the relationship type and education was significant. Older adults with a high school education or below, who were cared for by an adult child, had a significantly higher risk of increasing functional limitations over 4years compared to those cared for by a spouse/partner (contrast = .50, P = .01, 95% CI [.07, .93]; contrast=.52, P = .03, 95% CI [.03, 1.02]; respectively). Similarly, older adults with a high school education, who were cared for by multiple caregivers, also experienced a significantly higher risk of increasing functional limitations than those cared for by a spouse/partner (contrast = .44, P = .03, 95% CI [.02, .85]). Our findings provide evidence of the significant contribution of relationship type on PLWD's QoL changes over time. They also help to prioritize resource allocation while addressing PLWD's demands by socio-demographics such as education level.

District nurses’ experiences with involuntary treatment in dementia care at home: a qualitative descriptive study

BackgroundResearch shows that half of person(s) living with dementia (PLWD) receive care which they resist and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in providing this care. Knowledge about how district nurses experience involuntary treatment is lacking. Therefore, the aim of this study was to describe the experiences of district nurses who used involuntary treatment for PLWD at home.MethodsA qualitative descriptive design using semi-structured interviews. Sixteen district nurses with experience in involuntary treatment for PLWD were recruited through purposive sampling. Data were analysed using the Qualitative Analysis Guide of Leuven.ResultsDistrict nurses’ experiences with involuntary treatment were influenced by their involvement in the decision-making process. When they were involved, they considered involuntary treatment use to be appropriate care. However, at the moment that involuntary treatment use was started, district nurses were worried that its use was unjust since they wished to respect the wishes of the PLWD. Eventually, district nurses found, from a professional perspective, that involuntary treatment use was necessary, and that safety outweighed the autonomy of the PLWD. District nurses experienced dealing with this dilemma as stressful, due to conflicting values. If district nurses were not involved in the decision-making process regarding the use of involuntary treatment, family caregivers generally decided on its use. Often, district nurses perceived this request as inappropriate dementia care and they first tried to create a dialogue with the family caregivers to reach a compromise. However, in most cases, family caregivers stood by their request and the district nurse still provided involuntary treatment and found this difficult to tolerate.ConclusionsOur results show that district nurses experience involuntary treatment use as stressful due to dealing with obverse values of safety versus autonomy. To prevent involuntary treatment use and obverse values, we need to increase their ethical awareness, communication skills, knowledge and skills with person-centred care so they can deal with situations that can evolve into involuntary treatment use in a person-centred manner.

Latest Canadian Consensus Conference on the Diagnosis and Treatment of Dementia: What's in It for Primary Care?

In 2020, the fifth Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD5) published up-to-date recommendations for the clinical management of persons living with dementia (PLWD) and their caregivers. During the CCCDTD5 meetings, a list of recommendations for dementia care was compiled. With the aid of family physicians and the Canadian Consortium on Neurodegeneration in Aging, we selected the most relevant CCCDTD5 recommendations for primary care and tailored and summarized them in the present manuscript to facilitate their reference and use. These recommendations focus on (a) risk reduction, (b) screening and diagnosis, (c) deprescription of dementia medications, and (d) non-pharmacological interventions. The development of recommendations for the ongoing management of dementia is an iterative process as new evidence on interventions for dementia is published. These recommendations are important in the primary care setting as the entry point for PLWD into the health system.

Time out weekly smile: A pilot test of a virtual respite program

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Perceptions of Acute Care Telemedicine Among Caregivers for Persons Living with Dementia: A Qualitative Study.

Persons living with dementia (PLWD) have high emergency department (ED) utilization. Little is known about using telemedicine with PLWD and caregivers as an alternative to ED visits for minor acute health problems. This qualitative interview-based study elicited caregivers' perspectives about the acceptability of telemedicine for acute complaints. We performed telephone interviews with 28 caregivers of PLWD from two academic EDs, one in the Northeast and another in the South. Using a combined deductive-inductive approach, we coded interview transcripts and elucidated common themes by consensus. All caregivers reported they would need to participate in the telemedicine visit to help overcome communication and digital literacy challenges. People from racial/ethnic minority groups reported lower comfort with the virtual format. In both sites, participants expressed uncertainty about illness severity that could preclude using telemedicine for acute complaints. Overall, respondents deemed acute care telemedicine acceptable, but caregivers describe specific roles as crucial intermediaries to facilitate virtual care.

The needs of family caregivers of persons living with dementia cared for in primary care practices.

The informal caregivers who provide unpaid support for persons living with dementia (PLWD) are often unprepared to appropriately manage symptoms and navigate health services to support themselves or the PLWD. To understand informal caregivers' perceived capabilities of handling dementia symptomology and perceived support from providers. We identified and surveyed caregivers of primary care patients in the Mass General Brigham health system. We included a self-efficacy questionnaire to assess caregivers' ability and confidence in access to dementia care, symptom management, and provider support. Respondents indicated that although their provider had knowledge of dementia and memory care, they were least likely to agree (39.2%) that their provider helped them with these challenging symptoms. Those who live with the care recipient were least likely to receive advice about common symptoms (43.6%) and to access community services (63.8%), and in general felt moderately knowledgeable about the progression of the disease (47.9%). The findings imply that caregivers are aware of disease progression, dementia symptoms, and do not feel supported by their providers in managing care or accessing support services. There is opportunity to support informal caregivers in a primary care setting by appropriately uptraining providers in dementia care.

Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage.

Persons living with dementia (PLWD) experience high rates of hospitalization and rehospitalization, exposing them to added risk for adverse outcomes including delirium, hastened cognitive decline, and death. Hospitalizations can also increase family caregiver strain. Despite disparities in care quality surrounding hospitalizations for PLWD, and evidence suggesting that exposure to neighborhood-level disadvantage increases these inequities, experiences with hospitalization among PLWD and family caregivers exposed to greater levels of neighborhood disadvantage are poorly understood. This study examined family caregiver perspectives and experiences of hospitalizations among PLWD in the context of high neighborhood-level disadvantage. We analyzed data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) study, an in-depth, multisite qualitative study examining hospitalization and rehospitalization of PLWD in the context of high neighborhood disadvantage, to identify caregiver perspectives and experiences of in-hospital care. Data were analyzed using rapid identification of themes; duplicate transcript review was used to enhance rigor. Data from N = 54 individuals (47 individual interviews, 2 focus groups with 7 individuals) were analyzed. Sixty-three percent of participants identified as Black/African American, 35% as non-Hispanic White, and 2% declined to report. Caregivers' experiences were largely characterized by PLWD receiving suboptimal care that caregivers viewed as influenced by system pressures and inadequate workforce competencies, leading to communication breakdowns and strain. Caregivers described poor collaboration between clinicians and caregivers with regard to in-hospital care delivery, including transitional care. Caregivers also highlighted the lack of person-focused care and the exclusion of the PLWD from care. Caregiver perspectives highlight opportunities for improving hospital care for PLWD in the context of neighborhood disadvantage and recognition of broader issues in care structure that limit their capacity to be actively involved in care. Further work should examine and develop strategies to improve caregiver integration during hospitalizations across diverse contexts.

In sickness and in health: Loneliness, depression, and the role of marital quality among spouses of persons with dementia.

Older adults married to persons living with dementia (PLwD) may be at risk for loneliness and depression. We assessed the prevalence of loneliness and depressive symptoms among spouses of PLwD or cognitive impairment not dementia (CIND), and the role of marital quality in mediating these outcomes. We used a US population-based sample of 4071 couples enrolled in the Health and Retirement Study (2014 and 2016). We included older adults married to PLwD (N = 227), married to persons with CIND (N = 885), or married to persons with no cognitive impairment (NCI) (N = 2959). We determined the prevalence of loneliness (UCLA 3-item scale), depressive symptoms (CESD-8 scale), and both, using multivariable logistic regression adjusting for sociodemographic and health-related characteristics. We then tested for interaction terms between marital quality (4-item scale) and degree of spousal cognitive impairment for each outcome of loneliness and depressive symptoms. The sample was 55% women and on average 67-years-old (range: 50-97). After adjustment, spouses of persons with cognitive impairment were more likely to be lonely (NCI: 20%, CIND: 23%, PLwD: 29%; p = 0.04), depressed (NCI: 8%, CIND: 15%, PLwD: 14%; p < 0.01), and both (NCI: 4%, CIND: 9%, PLwD: 7%; p < 0.01). The association between cognition and loneliness, but not depression, differed by marital quality (interaction p-value = 0.03). Among couples with high marital quality, spousal cognitive impairment was associated with higher likelihood of loneliness (p < 0.05). In contrast, no association existed between spousal cognition and loneliness among couples with lower marital quality (p = 0.37). One in six spouses of persons with CIND or more advanced disease (PLwD) experienced depressive symptoms, and loneliness among spouses of PLwD was experienced at a twofold rate. By identifying and managing both, and facilitating interventions that promote high-quality social connection, clinical teams might improve the lives of older couples facing dementia.

The enrichment process for family caregivers of persons living with dementia: A grounded theory approach.

Many persons living with dementia (PLWD) reside in the community and are cared for by family members. The aim of this qualitative study was to gain an understanding the enrichment process for family caregivers of PLWD in Taiwan. A grounded theory approach with face-to-face semi-structured interviews was conducted with family caregivers of PLWD in Taiwan. Interview data from 30 family caregivers of PLWD recruited from dementia clinics or support groups in Taiwan were obtained from the first wave of a larger study conducted from January 2018 to September 2021. Glaser's grounded theory approach with theoretical sampling was used to understand the enrichment process of family caregivers of PLWD. Analysis indicated the core category that characterized the process of enrichment was 'holding together'. Caregivers were able to maintain their connection to the person with dementia through activities that deepened their relationship and strengthened their bond. 'Holding together' included four components: maintaining continuity, creative interactions, interacting with humour and sharing pleasurable activities. Through these components, family caregivers generated positive interactions and relationships with the person living with dementia and sustained their motivation for caregiving. Three modifying elements facilitated or impeded the process of holding together: 'previous daily interactions', 'caregiving beliefs' and 'filial piety'. Through the enrichment process of 'holding together', family caregivers used different strategies to conduct pleasurable and meaningful activities with the person living with dementia to maintain and improve their relationship and enhance their happiness in life. To facilitate the enrichment process, health care providers should encourage activities between family caregivers and PLWD that promote continuity, increase interactions, provide humour and foster pleasurable activities. This study adhered to the COREQ guideline checklist. No patient or public contribution.

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review.

Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics. We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care). We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease. In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.