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.

A Cross-Sectional Analysis of Factors Promoting Intergenerational Resilience in Adolescent Youth With Refugee Status.

BACKGROUND: Adolescent youth occupy a critical and complex position in refugee families who resettle in a third country. OBJECTIVES: We examined the potential impact of health- and family-related factors on the social and behavioral adjustment outcomes of refugee adolescent youth. METHODS: Situated within an explanatory sequential mixed methods study, we used unadjusted and adjusted multinomial logistic regression to identify trauma, health, and socioecological characteristics of war-affected families associated with social and behavioral adjustment in 72 Karen adolescent youth resettled in the United States. RESULTS: Factors related to the health and well-being of war-affected families, including parent mental and physical health, youth-reported family function, housing, and parent employment demonstrated important associations with youth adjustment. CONCLUSION: These findings, originating within the complex dynamics of resettled war-affected families, demonstrated the interconnectedness of adolescent and parent experiences and opportunities to advance resilience in youth navigating integration and supporting their families through those same processes.

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.

Multitasking during medication management in a nursing home: A time motion study.

BACKGROUND: Multitasking, defined as performing two or more interventions simultaneously, increases the cognitive burden of clinicians. This may, in turn, lead to higher risk of medication and procedural errors. Time motion study (TMS) data for nurses in nursing homes revealed an extensive amount of multitasking while managing medications. Further investigation of multitasked nursing interventions will provide a foundation for optimizing medication management workflows. OBJECTIVES: Using a continuous observational TMS method, this study aimed to describe pairs of multitasked nursing interventions associated with medication management interventions, including preparing and administering medications, assessing medication effects, instructing on medications, and documenting medication administration. METHODS: An external nurse observer used 57 pre-defined Omaha System nursing interventions embedded within TimeCaT (version 3.9) TMS data recording software to collect observation data in a single nursing home. A total of 120 hours of time-stamped observation data from nine nurses was downloaded from TimeCaT and analyzed using descriptive and inferential statistics. RESULTS: The majority (74%) of medication management interventions were multitasked, resulting in 2,003 pairs of multitasked interventions. Of the 57 Omaha System nursing interventions, 35 were involved in these multitasking pairs. When nurses multitasked, the average duration of medication preparation was longer (non-multitasked: 81 seconds; multitasked: 162 seconds, p<0.05), while the average duration of medication administration record documentation was shorter (non-multitasked: 93 seconds; multitasked: 66 seconds, p<0.05). CONCLUSIONS: The findings reveal the complexity of medication management in nursing homes with numerous and diverse multitasking pairs. Findings provide a platform for in-depth study of medication management multitasking in the clinical context, and inform future efforts to create clinical and informatics solutions to optimize medication management workflow. This method may be also applied to examine medication management and multitasking in other clinical settings.

Perceptions of Dementia and Dementia Care Among African Immigrants in Minnesota: Insights From Community Conversations.

OBJECTIVES: This qualitative descriptive study explored the perceptions of dementia, dementia care, and caregiving within the African immigrant community. METHODS: Six community conversations (focus groups) were held with 24 participants. Three conversations were led by project advisory board members and utilized a 12-question conversation guide. The recorded conversations were transcribed and analyzed using thematic analysis. RESULTS: Of the 24 African immigrants who participated, 52% were 55-75 years old, 67% identified as female, and 39% were married or cohabitating. Twenty percent were currently providing care to a relative with dementia and 40% had provided care to a relative with dementia in the past. Four themes were identified. These included (1) attitudes toward mental health, illnesses, and poor health, (2) community attitudes toward dementia, and dementia caregiving, (3) barriers to dementia care and caregiving, and (4) current dementia care resources in the African immigrant community. DISCUSSION: The findings show that African immigrant cultural beliefs significantly shape dementia care and caregiving attitudes, preferences, and behavioral practices. African immigrants' cultural backgrounds influence (or have the potential to influence) timely access and engagement in dementia care. And, depending on how deeply held these cultural beliefs are, they could affect dementia care and caregiving both positively and negatively. With the rapidly growing immigrant older adult population, there is a need for systemic strategies to facilitate affordable and culturally responsive dementia care for African immigrants and other minoritized older adults.

CarFreeMe™-Dementia: Potential Benefits of a Driving Retirement Intervention Supporting Persons With Dementia and Their Families.

Background and Objectives: Driving retirement can be a necessary but challenging and emotionally complex transition, especially for people living with dementia. This pilot study evaluated the utility of CarFreeMe™-Dementia (CFM™-D), a telehealth intervention providing tailored education and social support to those living with dementia and their care partners, as they prepare for or adjust to driving retirement. Delivered by empathetic health professionals, CFM™-D is a person-centric, flexible program tailored to address challenges specific to the participants' driving retirement stage and individualized contexts. Research Design and Methods: A single-arm, mixed-methods design was used to follow participants over a 6-month period. Participants received CFM™-D, a 7-8-module semistructured intervention, including education and planning support for driving retirement (impact of dementia, transportation options) and emotional adjustment (grief and loss, stress management). Surveys evaluated the perceived utility of intervention components as well as changes in well-being and readiness for driving retirement over time. An open-ended survey item and semistructured interviews provided additional feedback and a contextual understanding of the empirical data. Results: A total of 50 families enrolled (17 care partners, 16 retiring/retired drivers with memory loss, and 17 care partner-retiring/retired driver dyads). Nearly all participants would recommend the intervention. Care partners reported significantly reduced (p < .05) isolation and relationship strain, and retiring drivers reported significant reductions in depressive symptoms. Driving retirement preparedness scores improved. Driving retirement phase, enrolling as a dyad, and retiring driver cognitive/functional impairment were associated with these outcomes. Participants also engaged in more driving retirement activities outside of the intervention (e.g., talking with health professionals). Discussion and Implications: CFM™-D is a useful intervention for retiring drivers with dementia and their family members, with preliminary data suggesting it supports improved well-being and driving retirement preparedness. A randomized controlled trial is needed to determine the efficacy of the CFM™-D intervention and future translation needs.

Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities.

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

Efficacy of the residential care transition module: A telehealth intervention for dementia family caregivers of relatives living in residential long-term care settings.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months (N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Associations between Attachment and Depressive Symptoms among Older Adults Living with Early-Stage Cognitive Impairment and their Adult Children.

OBJECTIVE: This study examined the extent to which multiple relationship-specific attachment schemas (general, parent-child, romantic) are interrelated and relate to depressive symptoms among older adults living with early-stage dementia and their adult children, a context likely to activate the attachment system. METHOD: The study consisted of 150 early-stage cognitively impaired parents and one child. Both self-reported general, parent-child, and romantic attachment anxiety as well as avoidance and depressive symptoms. Parents' cognitive and functional impairment were assessed. RESULTS: Most attachment variables were interrelated for individuals, except that the child's parent-child specific avoidance was not associated with their general or romantic avoidance. The parent's worse functional, but not cognitive, impairment was associated with the child's greater parent-child specific attachment anxiety. Using Actor Partner Interdependence Models, general attachment anxiety was associated with greater depressive symptoms (actor effects). When both dyad members were high in general avoidance, depressive symptoms were greatest (actor X partner effect). A parent had the greatest depressive symptoms when they were avoidantly attached to their child (role X actor effect) and their child was high in anxiety and low in avoidance toward them (role X partner effects). A child had the greatest depressive symptoms when they were low in avoidance toward the parent (role X actor effect) and the parent was low in anxiety and high in avoidance toward the child (role X partner effects). Romantic anxiety was associated with greater depressive symptoms (actor effects). DISCUSSION: Psychosocial interventions that incorporate attachment theory as a framework may benefit parent-child dyads coping with dementia.

Qualitative Analysis of Implementation Factors of an Embedded Caregiver Support Intervention into Adult Day Services.

Background: Adult day services (ADS) are an important and often underutilized support resource for older adults. For persons living with dementia (PLWD), ADS is an optimal access point to not only receive therapeutic and rehabilitative activities, but as a vehicle for respite/relief for dementia caregivers. Yet, there is currently a lack of research on integrating caregiver interventions into home and community-based services such as ADS. Objective: This paper reports on qualitative findings from the Improving Outcomes for Family Caregivers of Older Adults with Complex Conditions: The Adult Day Plus (ADS Plus) Program Trial. Methods: Drawing from semi-structured interviews conducted with family caregivers and ADS site staff, we conducted a thematic analysis to examine the implementation process of ADS Plus. Results: Themes address the relational nature of the intervention, learning, influence of the administrative infrastructure, and receptivity of ADS Plus. Conclusions: Our analysis determined that implementation of ADS Plus was feasible and accepted by site staff and dementia caregivers but also calls for additional evaluation of embedded caregiver support interventions across different contexts (e.g., staff size, limited technology environments) to further identify and test implementation mechanisms across settings.

Activities of Daily Living Needs and Support in Adult Child-Parent Dyads.

This study examined whether changes in middle-aged children's perceptions of their parents' activities of daily living needs (ADL needs) were associated with changes in the mutuality of support in their relationship. A group of 366 middle-aged children in Waves 1 (2008) and 2 (2013) of the Family Exchanges Study self-reported providing and receiving tangible, emotional, and informational support to and from their n = 468 parents. Increased perceived parental ADL needs were associated with increased provision of tangible and informational support to parents but not with changes in support received. Increases in perceived parental ADL needs were associated with higher incongruence for all three support types (the child providing more support than they receive).

A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care.

This study sought to determine the perceived benefits of the Residential Care Transition Module (RCTM), a novel multi-component, psychoeducational/psychosocial, telehealth intervention for caregivers of cognitively impaired relatives living in residential long-term care (RLTC). Few support programs exist for these caregivers. Determining the intervention's mechanisms of benefit will provide actionable clinical and research information regarding which key features aspects RLTC and public health agencies should offer their families. We conducted semi-structured interviews with 30 purposively selected participants randomly assigned to receive the RCTM. Additionally, an open-ended survey question solicited feedback at 4 (n = 90), 8 (n = 79), and 12 months (n = 77). Available qualitative data were analyzed for thematic content. Participants endorsed 9 mechanisms of benefit. Six mechanisms were related to RCTM content: education dementia progression and dementia behavior management, personalized resource provision, strategies for communication and engagement with the care recipient (CR) and others, management of multiple roles, and relaxation exercises. Three mechanisms were related to coaching: emotional support, knowledgeability, and being a neutral third party. Common benefits attributed to RCTM included improvement in mood, caregiving confidence, and communication and interactions with CR and others. Using qualitative data and analyses, we discovered the most valued aspects of the RCTM intervention. These mechanisms of benefit have not been described in the literature. Notably, we were unable to detect mechanisms of benefit in a separate analysis utilizing quantitative data. Findings emphasize the importance of including qualitative measures in intervention research and selecting quantitative measures that reflect the intervention's real effects, if any.