Characteristics and Correlates of Perceived Physical and Psychological Health Among Family Caregivers Living With Persons With Advanced Dementia.

BACKGROUND: Various factors drive a care setting shift from institutional to home settings for dementia care until the latest stage of the disease, suggesting the critical role of family caregivers living with persons with dementia. OBJECTIVES: This study explored the characteristics and correlates of self-reported overall physical and psychological (ie, depressive symptoms and stress) health among family caregivers living with persons with dementia in Sweden. METHODS: This cross-sectional, descriptive study used baseline data from an existing music-based intervention study of persons with dementia and their family caregivers (N = 76). Multivariable linear regression analyses were performed. RESULTS: On average, caregivers (n = 38; mean age: 74.8 years) were slightly younger than persons with dementia (n = 38; mean age: 78.6 years). Most caregivers were female (n = 24; 63.2%) and spouses or partners of persons with dementia (n = 37; 97.4%). Caregivers' perceived relationship with their family members with dementia was the only factor associated with caregivers' self-reported overall physical health (b = -0.655, p = .046). This suggests caregivers' more frequent feeling of a good relationship with the persons with dementia was linked to better self-rated physical health among family caregivers living with persons with dementia. CONCLUSIONS: This study highlights the importance of family caregivers' perceived relationship with persons with dementia in the context of caregivers' self-reported physical health. Future research is needed to explore the perceived relationship from the perspectives of persons with dementia and the determinants of caregiving dyads' (persons with dementia and family caregivers) perceived relationship with each other.

Care Partners' Engagement in Preventing Falls for Community-Dwelling Older People With Dementia.

BACKGROUND AND OBJECTIVES: Little is known about how to prevent falls in community-dwelling older people with dementia. Although their care partners adopt various behaviors to prevent their falls, it is unclear if these behaviors reduce falls for those with different levels of fall risk. RESEARCH DESIGN AND METHODS: Linking the 2015 and 2016 National Health and Aging Trends Study and the 2015 National Study of Caregiving (NSOC), we identified 390 community-dwelling older people with dementia with 607 care partners. We selected 26 NSOC items representing fall risk management (FRM) behaviors. We examined the prevalence and dimensionality of these behaviors and investigated associations between care partners' behaviors in 2015 (T1) and older people's falls in 2016 (T2) stratified by their fall incidence at T1, adjusting for covariates. RESULTS: Five domains of FRM were identified: mobility and safety assistance, medical service coordination, health management, social service coordination, and accommodation. For those who did not fall at T1, mobility and safety assistance and social service coordination were each associated with an increased risk of falling at T2 (adjusted incidence rate ratio [aIRR] = 1.39, 95% confidence interval [CI] = 1.06-1.83, p = .019, aIRR = 1.25, 95% CI = 1.01-1.55, p = .043). For those who had fallen at T1, social service coordination was associated with a decreased risk of falling at T2 (aIRR = 0.83, 95% CI = 0.73-0.94, p = .004). DISCUSSION AND IMPLICATIONS: The different impacts of dementia care partners' FRM behaviors emphasize the need to address specific behaviors when involving care partners in preventing falls for older people with dementia at varying levels of fall risk.

How do care partners overcome the challenges associated with falls of community-dwelling older people with dementia? A qualitative study.

BACKGROUND AND OBJECTIVES: Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded. METHODS: We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States. FINDINGS: Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment. DISCUSSIONS AND IMPLICATIONS: Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are "second clients" and "competent collaborators." As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.

Six domains of health: a practical approach to identifying priorities in dementia care.

Background: High-quality healthcare for people living with dementia encompasses both patients and care partners (CPs). A framework populated with simple assessment tools is needed to deconstruct this complexity into actionable domains that inform assessment and care planning for individuals and dyads, help differentiate care team roles, and can more fully estimate true population burden in health and social care systems. Design: Researchers used a cross-sectional mixed-methods descriptive study to illustrate the use of an inductive Six Domain framework and simple assessment tools in a sample of dyads selected for complexity. Setting: Data was collected from three university-affiliated hospitals with a shared electronic medical record (EMR). Participants: Eighty-eight CPs for people living with dementia (care recipients) newly discharged home after an acute medical hospitalization participated. Measures: Care recipients' outpatient and inpatient diagnoses, medications, and care were extracted from the EMR. CPs completed an in-home semi-structured interview and study measures. Data were sorted into six domains: three care recipient-focused domains (cognition, emotion/behavior, general and functional health); a single CP-focused domain (mood, cognition, stress, and self-rated health); a health-related social needs domain (enrollment of persons with dementia in low-income insurance, CP-reported financial strain); and a care delivery domain (CP-reported engagement with clinicians in care recipients' care planning, and match between CP-reported knowledge of care recipients' medical care needs and medical records). Results: As expected, all people living with dementia had significant cognitive, neurobehavioral, and medical complexity requiring extensive oversight and management at home. Over a third of CPs reported high stress, depression, or anxiety. A fifth screened positive for one or more indicators of poor health, cognitive impairment, and/or health-related social needs. CP reports and care recipients' medical records were discordant for chronic conditions in 68% of cases and for prescribed medications in 44%. In 85% of cases, there were gaps in indicators of CP-clinician collaboration in care management. Conclusion and relevance: The Six Domains of Health framework captures a broad array of challenges that are relevant to providing comprehensive dyadic care and setting individualized health and social care priorities. With further study, it could provide conceptual scaffolding for comparative population research and more equitable, fully integrated pathways for care.