A Delphi Approach to Define Lucid Episodes in People Living With Dementia.

PURPOSE: Lucid episodes (LEs: unexpected episodes of spontaneous, meaningful, and relevant communication or behavior) in Alzheimer disease and related dementias are a new area of scientific inquiry that lacks clinical consensus and require more conceptual attention. METHODS: We aimed to measure consensus from an expert group on: (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical context to LEs; and (3) interpretation of LEs. PATIENTS: We convened 13 experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) to identify elements of LEs. RESULTS: Experts provided a range of opinions on medical and clinical explanations and questions to understand LEs. Consensus on LEs when presented with clinical vignettes was not reached. Panelists highlighted key medical and contextual factors needed to make a definitive judgement about LEs. CONCLUSION: There is variability in how LEs are interpreted by clinical experts, which complicates the identification of LEs in Alzheimer disease and related dementias.

Tailored videoconferencing counselling program to support family carers of people living with dementia during the transition to permanent residential care: a pilot and feasibility randomised trial.

BACKGROUND: Decisions surrounding the permanent residential care placement of people living with dementia can be stressful and distressing; however, providing access to targeted information and support prior to placement may help carers better cope. This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care. METHODS: A total of 18 family carers were randomly allocated to receive either the counselling intervention (six sessions delivered over 12 weeks) or a check-in call, delivered by a trained Transition Counsellor. Both groups received help-sheets about residential care, coping with placement, and managing feelings. Carers completed online surveys about stress, guilt, anxiety, depression, grief, and support for caring at baseline and four months post-baseline. Carers were also invited to participate in semi-structured exit interviews, conducted after follow-up surveys were completed. Process data relating to recruitment, retention, intervention dose and delivery were collected via logs. Quantitative data were analysed using descriptive statistics and repeated measures ANOVA. Qualitative data, relating to feasibility, acceptability, and perceived benefits of the program, were analysed using the 'framework' approach developed by the Medical Research Council to inform the process evaluation of complex interventions. RESULTS: Qualitative findings indicated that delivery of the counselling program during the transition period was deemed by participants to be feasible and acceptable. Delivery via videoconferencing was deemed convenient and acceptable, with few technical issues. The skills and knowledge of the Transition Counsellor were perceived to be important mechanisms of impact. Though not statistically significant, promising quantitative findings were identified in terms of reduced carer stress and guilt and improved support for caring. CONCLUSIONS: Delivery of a tailored counselling program via videoconferencing to family carers of people living with dementia during the transition to residential care was feasible and acceptable. The program has the potential to improve transitional support to family carers. TRIAL REGISTRATION: This study was registered in the Australian New Zealand Clinical Trials Registry: ACTRN12621001462875.

Positive affect expression during a play interaction and psychological health among older adults living with cognitive impairment and their adult children.

OBJECTIVES: We examined the extent to which positive affect expression in play interactions between adult children and their parents living with cognitive impairment was associated with lower depressive symptoms and mental health difficulties for both dyad members. Gender differences in positive affect expression were also examined. METHOD: Dyads (N = 126) self-reported their depressive symptoms and mental health difficulties. Dyad members later engaged in a video-recorded play interaction together, and their positive affect expression was observationally coded by trained coders in terms of 'enjoyment', 'laughter', and 'positive affect towards partner'. RESULTS: Findings from mixed models using the Actor Partner Interdependence Model showed that one's partner's positive affect was associated with one's own lower depressive symptoms. There were no significant actor effects or effects of role (parent vs. child). Results also revealed that women expressed more positive affect and had greater mental health difficulties, but not depressive symptoms. We found that one's partner's positive affect expressions were more associated with women's mental health than men's mental health. CONCLUSION: Positive affect expression may be a useful indicator of psychological health in parent-child relationships in which the parent has cognitive impairment. Positive affect may be useful to target in supportive, dyadic, psychosocial interventions.

Developing and describing a typology of lucid episodes among people with Alzheimer's disease and related dementias.

INTRODUCTION: This study examined lucid episodes among people living with late-stage Alzheimer's disease and related dementias (PLWD) and then developed a typology of these episodes to help characterize them. METHODS: Family caregivers of PLWD provided information about witnessed episodes, including proximity to death, cognitive status, duration, communication quality, and circumstances prior to lucid episodes on up to two episodes (caregiver N = 151; episode N = 279). Latent class analysis was used to classify and characterize empirically distinct clusters of lucid episodes. RESULTS: Four lucid episode types were identified. The most common type occurred during visits with family and among PLWD who lived > 6 months after the episode. The least common type coincided with family visits and occurred within 7 days of the PLWD's death. DISCUSSION: Findings suggest that multiple types of lucid episodes exist; not all signal impending death; and some, but not all, are precipitated by external stimuli.

The intersection of social determinants of health and family care of people living with Alzheimer's disease and related dementias: A public health opportunity.

In this Perspective article, we highlight current research to illustrate the intersection of social determinants of health (SDOHs) and Alzheimer's disease and related dementia (ADRD) caregiving. We then outline how public health can support ADRD family caregivers in the United States. Emerging research suggests that family care for persons with ADRD is influenced by SDOHs. Public health actions that address these intersections such as improved surveillance and identification of ADRD caregivers; building and enhancing community partnerships; advancing dementia-capable health care and related payment incentives; and reducing the stigma of dementia and ADRD caregiving can potentially enhance the health and well-being of dementia caregivers. By engaging in one or all of these actions, public health practitioners could more effectively address the myriad of challenges facing ADRD caregivers most at risk for emotional, social, financial, psychological, and health disruption.

Cost effectiveness of non-drug interventions that reduce nursing home admissions for people living with dementia.

INTRODUCTION: Six million Americans live with Alzheimer's disease and Alzheimer's disease and related dementias (AD/ADRD), a major health-care cost driver. We evaluated the cost effectiveness of non-pharmacologic interventions that reduce nursing home admissions for people living with AD/ADRD. METHODS: We used a person-level microsimulation to model the hazard ratios (HR) on nursing home admission for four evidence-based interventions compared to usual care: Maximizing Independence at Home (MIND), NYU Caregiver (NYU); Alzheimer's and Dementia Care (ADC); and Adult Day Service Plus (ADS Plus). We evaluated societal costs, quality-adjusted life years and incremental cost-effectiveness ratios. RESULTS: All four interventions cost less and are more effective (i.e., cost savings) than usual care from a societal perspective. Results did not materially change in 1-way, 2-way, structural, and probabilistic sensitivity analyses. CONCLUSION: Dementia-care interventions that reduce nursing home admissions save societal costs compared to usual care. Policies should incentivize providers and health systems to implement non-pharmacologic interventions.

Connecting Dementia Caregivers to Recommended Services: Care to Plan.

The current mixed methods, embedded study evaluated the use of an online tool (Care to Plan [CtP]) that generates tailored service and support recommendations for dementia caregivers as well as information that can connect dementia caregiver users to recommended resources. Forty-three dementia caregivers identified in a health care system were randomly assigned to receive either CtP or usual care. The embedded, mixed methods design resulted in no quantitative, direct evidence for CtP's efficacy. Qualitative data revealed important insights into facilitators of and barriers to CtP use. Qualitative data also demonstrated that CtP helped caregivers obtain a better awareness of their needs and experiences. Clinicians may find CtP useful as an initial tool to spur memory care/case management and facilitate conversations about caregivers' needs and resources to meet individualized challenges. [Journal of Gerontological Nursing, 49(10), 5-11.].

The Impact of Parent Torture and Family Functioning on Youth Adjustment in War-Affected Families: A Path Analysis Describing Intergenerational Trauma and the Family System.

The direct exposure to physical or psychological trauma from torture or war leads to well-documented individual health consequences. Less understood are the inclusive and intergenerational effects of war trauma on family systems and youth adjustment. The purpose was to examine mechanisms in war-affected families that explained the significant emotional and behavioral consequences of intergenerational trauma in youth through the use of multiple methods. Quantitative assessments of maternal and paternal caregivers and youth characterized associations between parent torture, parent mental health distress, parent physical health problems, family functioning, and youth adjustment. Narrative statements further contextualized processes through which the trauma of a parent impacted youth and family systems. The research was conducted in partnership with local, refugee-serving community-based organizations. The study sample included parents and youth in 96 Karen families, originating from Burma in Southeast Asia, who had been resettled to the United States through the U.S. Refugee Admissions Program. Path analysis results indicated that parent torture (ß = -0.173) had statistically significant negative direct effects on youth adjustment. Parent torture had a negative indirect effect on youth adjustment through the mental health (ß = -0.345) and physical health problems of parents (ß = -0.305), and youth gender (ß = 0.126) and trauma exposure of youth (ß = -0.048). Family functioning type demonstrated a positive direct effect on youth adjustment (ß = 0.449). Family type had an indirect effect on youth adjustment through youth gender (ß = 0.142), youth trauma exposure (ß = -0.165), parent physical health problems (ß = -0.202), and parent mental health (ß = 0.509). The current study developed and tested the first model of intergenerational trauma's effects on the adjustment of Karen refugee youth. Results emphasize that individual recovery from torture must be accompanied by adjunct interventions focused on family systems and youth adjustment, to holistically address intergenerational sequala of trauma.

Depressive Symptoms in Older African Immigrants with Mobility Limitations: A Descriptive Study.

OBJECTIVES: Before, during, and after their immigration to the United States, immigrants face stressful life circumstances that may render them at risk for depressive symptoms. However, there is a dearth of research on the mental health of African immigrants. We performed secondary data analyses of two studies in the Baltimore-Washington area to describe and identify correlates of depressive symptoms in older African immigrants. METHODS: Chi square tests, one-way ANOVAs, and linear regressions were used to describe and examine associations between depressive symptoms and immigrant-related risk factors. RESULTS: This sample included 148 participants who had a mean age of 62 (SD ± 8.2). Clinical depressive symptoms were present in 8.1% of participants, and trouble falling asleep for more than half of the days was the most prevalent symptom (20%). Levels of education, income, and migration reasons differed significantly from clinical depressive symptoms, but these were not significantly associated with more depressive symptoms after controlling for covariates. CONCLUSIONS: Longitudinal designs may further elucidate incidence, correlates, and long-term effects of depressive symptoms within this population. CLINICAL IMPLICATIONS: Knowledge of depressive symptom burden and risk factors can inform timely assessment, referral, and treatment of depressive symptoms and other mental health outcomes in older African immigrants.

Adult Day Services, Health Equity for Older Adults With Complex Needs, and the COVID-19 Pandemic.

Morbidity and mortality from COVID-19 have unduly affected older adults from racial and ethnic minority groups. In this article, we highlight the experiences and vulnerabilities of diverse older adults with complex health and social needs when their access to vital, but overlooked, community-based adult day service centers (ADSCs) was abruptly cut off during a pandemic. Pandemic-related ADSC closures left vulnerable older adults and their care partners without essential daily support and services, such as health monitoring and socialization. However, the magnitude of the impact of ADSC closures on well-being, particularly among members of racial/ethnic minority groups, has yet to be measured with any form of "big data" because large-scale, nationally representative data sets consisting of participant-level information and outcomes associated with ADSC participation do not yet exist. Unmet needs of older adults resulting from pandemic-related ADSC closures are underrecognized because of a lack of systematic data collection, undermining efforts to achieve health equity. We call on ADSCs to link rigorous collection of racial and ethnic data to quality measures of access to equitable "age-friendly" care as a means of better supporting diverse community-dwelling older adults beyond the COVID-19 pandemic. (Am J Public Health. 2022;112(10):1421-1428. https://doi.org/10.2105/AJPH.2022.306968).

Exploring Memory Care Clinics in Minnesota: A Qualitative Analysis.

OBJECTIVES: We explored memory clinic care provision in Minnesota, examining diversity and similarities of services provided and challenges faced. We also considered how well their services and care philosophies aligned with national dementia care practice recommendations. METHODS: We created a 53-question interview guide and interviewed 11 memory clinics across Minnesota in late 2019. Interview transcripts were analyzed using Braun and Clarke's thematic analyses in NVivo 12. RESULTS: We identified 6 themes regarding financial issues, staffing, appointment logistics, care provision during and after the memory evaluation as well as features of an ideal clinic. CONCLUSIONS: Memory evaluation and care provision were very different across clinics, primarily due to team make-up, particularly team size and specialty. However, memory care providers shared a passion for providing patient-centered memory care, emphasizing family and patient education and partnership. Their care was largely aligned with national memory care recommendations. Common challenges, including maintaining financial stability and clinic efficiency, exerted significant influence on clinic functioning and survival.

Pragmatic trials in long-term care: Research challenges and potential solutions in relation to key areas of care.

As a method of research, pragmatic trials are recommended so as to generate results that are applicable to real-world care. This intent is especially important for the millions of older adults who receive long-term care in thousands of nursing homes and assisted living communities across the country-and many millions more around the globe. This article presents key points raised by experts participating in a conference funded by the National Institute of Aging held at the 2021 conference of the Society for Post-Acute and Long-term Care Medicine. The purpose of the conference was to convene leading clinicians, researchers, and industry partners to address special considerations of pragmatic trials in long-term care. Cross-cutting and unique challenges and solutions to conducting pragmatic trials were discussed focusing on 3 areas of clinical relevance to long-term care: (1) functional care and outcomes, (2) psychosocial care and quality of life, and (3) medical care and outcomes, with a special focus on persons with dementia. Challenges and innovative solutions were organized across the 9 domains of the revised Pragmatic-Explanatory Continuum Indicator Summary (PRECIS) Tool, and future research recommendations for pragmatic trials in long-term care were identified.

Pragmatic trials in long-term care: Challenges, opportunities, recommendations.

Randomized controlled trials are considered the most rigorous research design in efficacy and effectiveness research; however, such trials present numerous challenges that limit their applicability in real-world settings. As a consequence, pragmatic trials are increasingly viewed as a research design that overcomes some of these barriers with the potential to produce data that are more reproducible. Although pragmatic methodology in long-term care is receiving increasing attention as an approach to improve successful dissemination and implementation, pragmatic trials present complexities of their own. To address these complexities and related issues, experts with experience conducting pragmatic trials, developing nursing home policy, participating in advocacy efforts, and providing clinical care in long-term care settings participated in a virtual consensus conference funded by the National Institute on Aging in Spring 2021. Participants recommended 4 cross-cutting principles key to dissemination and implementation of pragmatic trial interventions: (1) engage stakeholders, (2) ensure diversity and inclusion, (3) assess organizational strain and readiness, and (4) learn from adaptations. Specifically related to implementation, participants provided 2 recommendations: (1) integrate interventions into existing workflows and (2) maintain agility and responsiveness. Finally, participants had 3 recommendations specific to dissemination: (1) package the message for the audience, (2) engage diverse audiences, and (3) apply dissemination and diffusion tools. Participants emphasized that implementation processes must be grounded in the perspectives of the people who will ultimately be responsible for implementing the intervention once it is proven to be effective. In addition, messaging must speak to long-term care staff and all others who have a stake in its outcomes. Although our understanding of dissemination and implementation strategies remains underdeveloped, this article is designed to guide long-term care researchers and community providers who are increasingly aware of the need for pragmatism in disseminating and implementing evidence-based care interventions.

Pilot Study of the Residential Care Transition Module to Support Australian Spouses of People with Dementia.

OBJECTIVES: Spouses are at risk of poor psychosocial outcomes following placement of their partner with dementia into long-term care. The Residential Care Transition Module (RCTM) is a psychosocial intervention developed in the United States to support carers post-placement. This study aimed to test the RCTM delivered by telephone to Australian spousal carers. METHODS: A small-scale RCT [N = 21] was conducted to test feasibility of recruitment, retention, acceptability, and preliminary effects on measures of stress, grief, depression, guilt, quality-of-life, and satisfaction with care, compared to a group receiving printed information. RESULTS: The Transition Counselor and study participants considered the intervention delivery, dose, and content as acceptable. Retention was high (91%). At follow-up, significant time effects were found for stress, depression and "nursing home hassles." A significant interaction effect was found for quality-of-life in favor of the comparison group. No effects were found for guilt or overall grief, however a promising result regarding the sub-scale of "acceptance of loss" was found in favor of the RCTM. CONCLUSIONS: The delivery of the RCTM to Australian spousal carers was feasible and acceptable. CLINICAL IMPLICATIONS: The RCTM shows potential for improving support to spouses of people with dementia following long-term care placement.

Profiles of Caregiving Arrangements of Community-dwelling People Living with Probable Dementia.

People living with dementia receive care from multiple caregivers, but little is known about the structure of their caregiving arrangements. This study used the Health and Retirement Study and latent class analyses to identify subgroups of caregiving arrangements based on caregiving hours received from spouses, children, other family/friends, and paid individuals among married (n = 361) and unmarried (n = 473) community-dwelling people with probable dementia. Three classes in the married sample (class 1 "low hours with shared care," class 2 "spouse-dominant care," and class 3 "children-dominant care") were identified. In class 1, spouses, children, and paid individuals provided 53%, 22%, and 26% of the caregiving hours, respectively. Three classes in the unmarried sample (class 1 "low hours with shared care," class 2 "children-dominant care," and class 3 "paid-dominant care") were identified. In unmarried class 1, children, other family/friends, and paid individuals provided 35%, 41% and 24% of the caregiving hours, respectively.

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation.

BACKGROUND: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer's disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p < .05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative's dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). METHODS: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM's effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. RESULTS: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. CONCLUSIONS: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. TRIAL REGISTRATION: ClinicalTrials.gov NCT03665909 , retrospectively registered on 11 Sept 2018.

The use of community advisory boards in pragmatic clinical trials: The case of the adult day services plus project.

Community advisory boards (CABs) have become increasingly common and important in translational research in health care including studies focusing on home and community-based services. CABs are composed of stakeholders who share interest in research projects and typically include patients/clients, practitioners, community members, policymakers, and researchers. CABs advise researchers on issues ranging from research design and recruitment to implementation and dissemination. In this article, the researchers detail their experiences with the CAB for a pragmatic clinical trail of Adult Day Services (ADS) Plus, an education and support intervention for family caregivers of older adults with dementia using adult day services. Lessons learned, guidelines, and best practices are then presented for developing and working with a CAB in healthcare research.

Dementia Caregivers' Experiences and Reactions to Remote Activity Monitoring System Alerts.

Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. We used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes. Quantitative analyses showed a modest positive association between the number of alerts during the first month and system review score. In addition, qualitative results illustrated the importance of alert context, including utility, accuracy, and type of alert delivery. These findings highlight the relevance of early alerts to engagement with and perceived benefit from the RAM system. [Journal of Gerontological Nursing, 47(1), 13-20.].

"It's about a Life Worth Living": Rosalie A. Kane, PhD, Pioneer of Quality of Life Measurement in Long-Term Care.

This contribution to the special issue celebrating Dr. Kane's legacy in the Journal of Gerontological Social Work highlights her significant scholarly achievements in the measurement of quality of life in long-term care. Following a synthesis of Dr. Kane's groundbreaking work in this area, we summarize how her study of the measurement of quality of life has served as the foundation for significant practice/policy advancements. We conclude that Dr. Kane and her ongoing legacy in the rigorous measurement of quality of life has achieved her ultimate aspiration: the elevation of quality of life as the central concern when selecting, using, delivering, and valuing long-term care.

The Effect of Physical and Cognitive Impairments on Caregiving.

BACKGROUND: Many older adults receive caregiving; however, less is known about how a change in a care recipient's functional activity limitations [instrumental activities of daily living (IADL) and basic activities of daily living (ADL)] as well as their cognitive impairment influence the amount of caregiving received. METHODS: Using the Health and Retirement Study (2002-2014) we identified community-dwelling respondents with Alzheimer disease and related dementias (ADRD; n=674), cognitive impairment no dementia (CIND; n=530), and no cognitive impairment (n=6126). We estimated a series of two-part regression models to identify the association between care recipients' level of cognitive impairment, change in total number of IADL/ADL limitations and amount of caregiving received. RESULTS: Persons with ADRD received 235.8 (SD=265.6) monthly hours of care compared with 26.0 (SD=92.6) and 6.0 (SD=40.7) for persons with CIND and no cognitive impairment, respectively. An increase in one IADL/ADL limitation resulted in persons with ADRD and CIND receiving 4.90 (95% confidence interval: 3.40-6.39) and 1.43 (95% confidence interval: 0.17-2.69) more hours of caregiving than persons with no cognitive impairment. Increases in total IADL/ADL limitations were associated with persons with ADRD, but not CIND, receiving more days of caregiving and having more caregivers than persons with no cognitive impairment. CONCLUSIONS: Compared with persons with no cognitive impairment, increases in IADL/ADL limitations disproportionally increases the caregiving received for persons with ADRD. Policies and programs must pay attention to functional impairments among those living with ADRD.