Usability, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology-Supported Mental Health Intervention for Family Caregivers of People With Dementia: Field Usability Study.

BACKGROUND: Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of health care systems but face an increased risk of emotional distress and negative physical and mental health outcomes. OBJECTIVE: The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, the Caregiver Remote Education and Support (CARES) smartphone or tablet app. METHODS: A total of 9 adult family caregivers of people with dementia received the CARES intervention, and 3 former family caregivers of people with dementia were trained to deliver it. Quantitative data were collected at baseline and at the end of the 2-week field usability study. Qualitative data were also collected at the end of the 2-week field usability study. RESULTS: The field usability study demonstrated that a 2-week peer-delivered and technology-supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers of people with dementia as acceptable. Current family caregivers rated CARES as above average in usability, whereas the caregiver peer supporters rated CARES as marginally usable. CARES was associated with non-statistically significant improvements in burden, stress, and strain levels. CONCLUSIONS: This field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current family caregivers of people with dementia. Future studies would benefit from a longer trial; a larger sample size; a randomized controlled design; and a control of covariables such as stages of dementia, years providing care, and severity of dementia symptoms.

Insights into designing educational materials for persons living with dementia: a focus group study.

BACKGROUND: Persons living with dementia (PLWD) may experience communication difficulties that impact their ability to process written and pictorial information. Patient-facing education may help promote discontinuation of potentially inappropriate medications for older adults without dementia, but it is unclear how to adapt this approach for PLWD. Our objective was to solicit feedback from PLWD and their care partners to gain insights into the design of PLWD-facing deprescribing intervention materials and PLWD-facing education material more broadly. METHODS: We conducted 3 successive focus groups with PLWD aged ≥ 50 (n = 12) and their care partners (n = 10) between December 2022 and February 2023. Focus groups were recorded and transcripts were analyzed for overarching themes. RESULTS: We identified 5 key themes: [1] Use images and language consistent with how PLWD perceive themselves; [2] Avoid content that might heighten fear or anxiety; [3] Use straightforward delivery with simple language and images; [4] Direct recipients to additional information; make the next step easy; and [5] Deliver material directly to the PLWD. CONCLUSION: PLWD-facing educational material should be addressed directly to PLWD, using plain, non-threatening and accessible language with clean, straightforward formatting.

Barriers to and Facilitators of Family Caregiving of Patients With COVID-19 Early in the Pandemic.

BACKGROUND: In 2020, many family members were thrust into the role of caregiving for a relative with COVID-19 with little preparation, training, or understanding of the disease and its symptoms. OBJECTIVES: To explore the barriers to and facilitators of caregiving experienced by family caregivers of patients with COVID-19 who had been in intensive care in the pandemic's earliest months. METHODS: In-depth qualitative interviews were conducted by web conference with 16 adults recovering at home after intubation for COVID-19 in an intensive care unit at a major academic medical center and their primary caregivers from March to August 2020 (N = 32). Thematic qualitative analysis was done using Watkins' rigorous and accelerated data reduction technique with MAXQDA software. RESULTS: Seven themes emerged regarding factors that facilitated or posed barriers to care: other health conditions that increased complexity of care, interactions and experiences in the health care system, COVID-19's proliferation into other areas of life, the psychological well-being of the patient-caregiver dyad, experience of support from the dyad's network, the role of caregiving in the dyad, and contextual circumstances of the dyad. The themes often included both barriers and facilitators, depending on the experience of the dyad (eg, feeling encouraged vs fatigued by their support network). CONCLUSIONS: Understanding how patients with COVID-19 and their caregivers experience illness management across the recovery journey can help clarify the COVID-19 care-giving process and identify intervention targets to improve overall health and well-being of the care dyad.

Functional Decline Over Time and Change in Family and Other Unpaid Care Provided to Community-Dwelling Older Adults Living With and Without Dementia.

OBJECTIVES: To provide a longitudinal analysis of how functional decline over time among older adults affects provision of family and unpaid care, overall and stratified by dementia status. METHODS: Longitudinal cohorts of community-dwelling adults ≥65 years between 2015 and 2017 from the National Health and Aging Trends Study (NHATS; n = 5,103) and their caregivers from the National Study of Caregiving (n = 862 caregivers for 595 NHATS care recipients). A panel data fixed-effects model was used to examine how increases in mobility, self-care, and household activity-related impairment between 2015 and 2017 affected family and unpaid care (care recipient reported: total number of family and unpaid caregivers, total hours of care received; caregiver reported: hours of care provided, caregiving-related emotional, and physical difficulties). RESULTS: Among community-dwelling older adults overall, impairment in 1 additional self-care activity led to 0.12 more caregivers and 19 additional total monthly hours of care. Among those with dementia, impairment in 1 additional self-care activity led to 0.14 more caregivers and 28 additional total monthly hours of care; among those without dementia, this was 0.11 caregivers and 15 total monthly hours of care. For dementia caregivers, impairment in 1 additional self-care activity among their care recipients led to 8% higher probability of caregiving-related emotional difficulty. DISCUSSION: There is a mismatch between the large additional hours of care received by older adults who experience functional decline (particularly self-care activities) and the relatively small accompanying increase in family and unpaid caregivers. Targeted functional supports, particularly for self-care activities, may benefit both older adults and their caregivers.

Gatekeepers: The Association of Caregiving Network Characteristics With Emergency Department Use by Persons Living With Dementia.

OBJECTIVES: Caregivers are typically enmeshed in networks of family and friends who assist with care, yet this network is largely neglected in research. In light of the fact that caregivers are key medical decision makers and play a critical role in how persons living with dementia (PLwDs) interface with the health care system, this study explores how features of the caregiver network relate to PLwD emergency department (ED) use. METHODS: Using 2015 National Health and Aging Trends Study data linked with fee-for-service Medicare claims, we examine ED use in a nationally representative sample of community-dwelling persons aged 65 and older with dementia and at least 1 caregiver. We consider aspects of the caregiver network including membership (e.g., daughter in network), network size, hours of care received, and the presence of generalists and specialists (i.e., broad vs narrow functional assistance) as predictors of ED encounters among PLwD. RESULTS: PLwDs were 81.5 years old on average, 50% were female, and 33% were non-White. Care networks including nonimmediate family members involved in task sharing for mobility and self-care difficulties and those with more generalists had significantly higher odds of an ED visit. Networks that only consisted of specialist caregivers had significantly lower odds of an ED visit. DISCUSSION: Greater complexity of care networks increases risk of presenting to the ED for care. Better understanding how caregiving networks help PLwD interact with the health care system can inform intervention design and targeting in order to help care networks improve care coordination, management, and shared decision making.

Validation of a Measure of Role Overload and Gains for End-of-Life Dementia Caregivers.

OBJECTIVES: Caregiving stress process models suggest that heterogeneous contexts differentially contribute to caregivers' experiences of role overload and gains. End-of-life (EOL) caregivers, especially EOL dementia caregivers, facing unique challenges and care tasks, may experience role overload and gains in different ways than other caregivers. This study evaluates measurement invariance of role overload and gains between EOL caregivers and non-EOL caregivers and between EOL dementia and EOL non-dementia caregivers. METHODS: We utilized role gains and overload data from 1,859 family caregivers who participated in Round 7 of the National Study of Caregiving. We ran confirmatory factor analyses to investigate the factorial structure across all caregivers and then examined the structure's configural, metric, and scalar invariance between (a) EOL caregivers and non-EOL caregivers and (b) EOL dementia and EOL non-dementia caregivers. RESULTS: Across the entire sample, the two-factor overload and gains model had good fit (χ 2(19) = 121.37, p < .0001; RMSEA = .053, 90% CI = [.044, .062]; CFI = .954; TLI = .932). Tests of invariance comparing EOL caregivers to non-EOL caregivers and EOL dementia caregivers to EOL non-dementia caregivers maintained configural, metric, and partial scalar invariance. Latent mean comparisons revealed that EOL caregivers had higher role overload (p = .0002), but no different role gains (p = .45), than non-EOL caregivers. Likewise, EOL dementia caregivers had higher role overload (p = .05), but no different role gains (p = .42), than EOL non-dementia caregivers. DISCUSSION: Results offer both a deeper theoretical understanding of end-of-life dementia caregivers' experiences of role overload and gains, and a practical tool to measure those experiences.

A national profile of sandwich generation caregivers providing care to both older adults and children.

BACKGROUND: Many U.S. caregivers provide care to the generation above and below simultaneously, described as "sandwich" generation caregivers. We seek to provide the first national estimates characterizing sandwich generation caregivers and the older adults for whom they care. METHODS: We used the 2015 National Study of Caregiving (NSOC) and National Health and Aging Trends Study (NHATS) to compare individual (demographic, socio-economic, health, and caregiving characteristics) and caregiving-related experience (financial and emotional difficulties, caregiver role overload and gains, supportive services, employment and participation restrictions) between sandwich and non-sandwich generation caregivers. The analysis included adult child caregivers with or without any minor child under 18 years (n = 194 and 912 NSOC respondents, respectively) providing care to n = 436 and 1217 older adult NHATS respondents. RESULTS: Of all adult child caregivers, 24.3% also cared for a minor child (i.e., sandwich generation caregivers), representing 2.5 million individuals. Sandwich generation caregivers provided similar care hours to older care recipients as non-sandwich caregivers (77.4 vs. 71.6 h a month, p = 0.60), though more of them worked for pay (69.4% vs. 53.9%, p = 0.002). Both sandwich generation caregivers (21.0% vs. 11.1%, p = 0.005) and their care recipients (30.1% vs. 20.9%, p = 0.006) were more likely to be Medicaid enrollees than their non-sandwich caregiving counterparts. More sandwich generation caregivers reported substantial financial (23.5% vs. 12.2%, p < 0.001) and emotional difficulties (44.1% vs. 32.2%, p = 0.02) than non-sandwich caregivers; they also reported higher caregiver role overload (score: 2.9 vs. 2.4, p = 0.04). Their supportive services use was similarly low as non-sandwich caregivers except for seeking financial help (24.8% vs. 14.7%, p = 0.008). CONCLUSIONS: Besides caring for minor child(ren), sandwich generation caregivers provided similarly intense care to care recipients as non-sandwich caregivers and had higher labor force participation; they experienced more caregiving-related financial and emotional difficulties and role overload. Policymakers may consider supportive services that address their unique needs and roles.

Caregiving in the COVID-19 pandemic: Family adaptations following an intensive care unit hospitalisation.

AIM AND OBJECTIVE: To identify how family caregivers adapt to the caregiving role following a relative's COVID-19-related intensive care unit (ICU) hospitalisation. BACKGROUND: Family caregiving is often associated with poor health amongst caregivers which may limit their capacity to effectively support patients. Though severe COVID-19 infection has necessitated increasing numbers of persons who require caregiver support, little is known about these caregivers, the persons they are caring for, or the strategies used to effectively adjust to the caregiving role. DESIGN: A qualitative descriptive study design was adopted, and findings are reported using COREQ. METHODS: A secondary analysis of transcripts from semi-structured interviews conducted with recently discharged ICU patients who had COVID-19 (n = 16) and their family caregivers (n = 16) was completed using thematic analysis. MAXQDA 2020 and Miro were used to organise data and complete coding. Analysis involved a structured process of open and closed coding to identify and confirm themes that elucidated adaptation to family caregiving. RESULTS: Six themes highlight how family caregivers adapt to the caregiving role following an ICU COVID-19-related hospitalisation including (1) engaging the support of family and friends, (2) increased responsibilities to accommodate caregiving, (3) managing emotions, (4) managing infection control, (5) addressing patient independence and (6) engaging support services. These themes were found to be congruent with the Roy adaptation model. CONCLUSIONS: Family caregiving is a stressful transition following a patient's acute hospitalisation. Effective adaptation requires flexibility and sufficient support, beginning with the care team who can adequately prepare the family for the anticipated challenges of recovery. RELEVANCE TO CLINICAL PRACTICE: Clinical teams may improve post-hospitalisation care outcomes of patients by preparing families to effectively adjust to the caregiver role-particularly in identifying sufficient support resources. PATIENT OR PUBLIC CONTRIBUTION: Participation of patients/caregivers in this study was limited to the data provided through participant interviews.

Neighborhood Characteristics and Caregiver Depressive Symptoms in the National Study of Caregiving.

Objectives: We examined the association between neighborhood characteristics and depressive symptoms in a population-based sample of dementia caregivers. Methods: Data came from the 2017 National Health and Aging Trends Study (NHATS) and National Study of Caregiving. The sample included 956 caregivers of those with dementia. Linear regression was used to examine associations between neighborhood physical disorder neighborhood social cohesion, and depressive symptoms, and to test the moderating effect of social support on these relations. Results: Results suggested that having friends and family (1) to talk to buffered the effect of high NPD and low cohesion on depressive symptoms, (2) to help with daily activities buffered the effect of low cohesion on depressive symptoms, and finally, and (3) to help with care had a protective effect on depressive symptoms if social cohesion was high. Discussion: Neighborhood contextual characteristics and social support interact to affect caregiver depressive symptoms in complex ways.

Daily sleep, well-being, and adult day services use among dementia care dyads.

OBJECTIVES: The study aimed to describe daily sleep characteristics for dementia care dyads in the context of adult day services (ADS) use and examine the associations with sleep quality and daytime functioning (fatigue, affect, and behavior problems). METHODS: Caregivers (CG; N = 173) reported daily bedtime, wake time, and sleep quality for themselves and the persons living with dementia (PLWD) across 8 consecutive days (N = 1359), where PLWD attended ADS at least 2 days of the week. On each day, caregivers also reported their own fatigue and affect and PLWD's daytime behavior problems and nighttime sleep problems. Considering the context of ADS use, we compared mean differences in bedtime, wake time, and total time in bed on nights before versus after ADS use. We estimated multilevel models to examine daily sleep-well-being associations. RESULTS: On nights before an upcoming ADS day, care dyads went to bed and woke up earlier, and spent less time in bed. Further, PLWD had better sleep quality the night before an upcoming ADS day. Using ADS during the day buffered the negative impact of PLWD's sleep problems in the previous night, reducing daytime negative affect for caregivers. For caregivers, using ADS yesterday attenuated the association between shorter than typical time in bed and daytime fatigue; it also attenuated the association between PLWD's nighttime sleep problems and lowered daytime positive affect. CONCLUSIONS: Regular ADS use may promote earlier sleep timing and protect against the adverse impact of sleep disturbances on daytime functioning for dementia care dyads.

Care Challenges Due to COVID-19 and Mental Health Among Caregivers of U.S. Adults With a Chronic or Disabling Condition.

BACKGROUND AND OBJECTIVES: The coronavirus disease 2019 (COVID-19) pandemic poses new challenges for caregivers of adults with chronic or disabling conditions. This study uses nationally representative data to examine the prevalence of pandemic care challenges and supports and their associations with caregiver mental health and interpersonal well-being. RESEARCH DESIGN AND METHODS: Participants include 311 caregivers aged 50-80 in the United States who were providing care for an adult with a chronic or disabling condition from the June 2020 National Poll on Healthy Aging. Five care challenges (e.g., confusion on public health guidelines) and 2 supports (e.g., physician offered information on care during COVID-19) are treated as predictors of caregiver mental health (care-related stress, self-reported mental health, and depressive symptoms) and interpersonal well-being (interpersonal conflicts, lack of companionship, and isolation). RESULTS: Each care challenge/support was endorsed by 13%-23% of caregivers. In adjusted models, difficulty getting needed medical care was associated with greater caregiver stress, depressive symptoms, and lower interpersonal well-being. All care challenges universally predicted greater caregiver stress. Caregiving supports were not independently associated with caregiver' mental health and interpersonal well-being. DISCUSSION AND IMPLICATIONS: Care challenges were associated with caregivers' mental health and interpersonal well-being during the early months of the pandemic. Some of these challenges may be attributed to changing public health guidelines and practices as the pandemic unfolded, whereas others are relevant to all care contexts (e.g., less support from family). Tools and supports for caregivers must consider both changing policies and care needs.

Characterizing dementia caregiver style in managing care challenges: Cognitive and behavioral components.

BACKGROUND: Caring for a person living with dementia can take a physical and emotional toll, but understudied is the process by which family caregivers actually provide care. Caregiver management styles may vary and affect care decision-making, experiences, receptivity to and participation in interventions, and outcomes for the caregiver and person living with dementia. METHODS: Participants included 100 primary family caregivers for persons with dementia who were on average 64 years old and had been providing care for 55 months, 74% women, and 18% nonwhite. Participants were interviewed in Michigan and Ohio regarding their cognitive and behavioral management of a recent care challenge and values guiding their decision-making. The rigorous and accelerated data reduction technique was used to analyze qualitative data leading to the identification of caregiving styles. Styles were compared across sample characteristics using chi-square and ANOVA tests. FINDINGS: Five distinct styles emerged: "Externalizers" (superficial understanding, self-focused, and frequent expressions of anger or frustration), "Individualists" (provide care by going alone, emotionally removed, and lack management strategies), "Learners" (recognize need to change their approach but are stuck and emotionally turbulent), "Nurturers" (positive affect and empathy toward care and reflect natural mastery), and "Adapters" (arsenal of acquired management strategies and adapt to challenges). Style groups differed significantly in terms of age and use of formal care supports. DISCUSSION: We identified five distinct styles by which caregivers addressed care challenges using a robust qualitative methodology. Styles may be important to identify in order to better tailor interventions to needs and abilities.

Accentuate the Positive: The Association Between Informal and Formal Supports and Caregiving Gains.

Background: To promote resilience among caregivers for persons living with dementia (PLWDs), we examine how formal and informal supports are linked to caregiving gains, and whether gender moderates the association between supports and gains. Method: Using the National Health and Aging Trends Study and associated National Study of Caregiving, sources of informal (emotional support, practical support, and help with the PLWD) and formal support (respite care, training program, support group) are considered as predictors of caregiving gains, with gender as a moderator of these associations. The sample included 707 caregivers for 502 PLWDs. Results: Greater caregiving gains were significantly associated with emotional support from friends/family (ß = 0.14, SE = 0.09, p = .03). Furthermore, attending a caregiver training program was only associated with increased caregiving gains among men (ß = 0.11, SE = 0.08, p = .02). Conclusion: Emotional support from family/friends appears particularly consequential for caregiving gains, and male caregivers may benefit most from programs that emphasize skill building.

Vision impairment and depression among older adults in low- and middle-income countries.

OBJECTIVES: To investigate the association between visual impairment (VI) and depression in low- and middle-income countries (LMICs) and the mediating role of disability and social participation. METHODS/DESIGN: The World Health Organization Study on global AGEing and adult health (SAGE) provided data on objective and subjective visual function, depression, disability (WHODAS-12), and social participation for nationally representative samples of adults 50 years and older in China, India, Ghana, Mexico, Russia, and South Africa. Multivariable logistic and linear models were used to test the association between VI and depression and the indirect pathways through disability and social participation. Analyses were adjusted for sociodemographics, medical comorbidities, and complex survey design features. RESULTS: Visual acuity was worse in respondents with depression compared to those without depression in China (0.32 vs 0.23 logMAR; P < .001), Ghana (0.26 vs 0.18 logMAR; P < .001), and India (0.36 vs 0.30 logMAR; P < .001); self-reported vision was also significantly worse in these three countries, but not in Mexico, Russia, or South Africa. Greater disability significantly mediated the association of both objective and self-reported VI with depression in China and India. Social participation significantly mediated the association between subjective vision and depression in Ghana. CONCLUSIONS: There is variability in the association between VI and depression across LMICs and in the mediating role of disability and social participation. Culture-specific instruments may be needed to better characterize the association between VI and depression and further research is needed to assess causality.

Early Cognitive Decline and its Impact on Spouse's Loneliness.

BACKGROUND: Loneliness is common in dementia caregivers as cognitive impairment (CI) alters marital and social relationships. Unexplored is how an individual's loneliness is affected at earlier, more ambiguous, periods of their spouse's CI. METHODS: Using the Health and Retirement Study, our study participants included 2,206 coupled individuals with normal cognitive function at the 2006/8 baseline. Loneliness outcomes at baseline, 4-year and 8-year follow-up are assessed by the status of transition to cognitive impairment no dementia (TCIND) (2010/12 & 2014/16) using linear mixed models. RESULTS: Individual's loneliness was stable when their spouse's cognition remained normal, but increased with the spouse's TCIND. The increase in loneliness did not vary by gender. CONCLUSIONS: Loneliness, a key risk factor for reduced life quality and increased depression, increases even at early stages of a partner's CIND. This work suggests the potential impact of early intervention and social support for partners of individuals with CIND.

Frailty Phenotype and Cause-Specific Mortality in the United States.

BACKGROUND: Frailty is a common condition among older adults increasing risk of adverse outcomes including mortality; however, little is known about the incidence or risk of specific causes of death among frail individuals. METHODS: Data came from the Health and Retirement Study (HRS; 2004-2012), linked to underlying cause-of-death information from the National Death Index (NDI). Community-dwelling HRS participants aged 65 and older who completed a general health interview and physical measurements (n = 10,490) were included in analysis. Frailty was measured using phenotypic model criteria-exhaustion, low weight, low energy expenditure, slow gait, and weakness. Underlying causes of death were determined using International Classification of Diseases, Version 10 codes. We used Cox proportional hazards and competing risks regression models to calculate and compare incidence of cause-specific mortality by frailty status. RESULTS: During follow-up, prefrail and frail older adults had significantly greater hazard of all-cause mortality compared to individuals without symptoms (adjusted hazard ratio [HR] prefrail: 1.85, 95% CI: 1.51, 2.25; HR frail: 2.75, 95% CI: 2.14, 3.53). Frailty was associated with 2.96 (95% CI: 2.17, 4.03), 2.82 (95% CI: 2.02, 3.94), 3.48 (95% CI: 2.17, 5.59), and 2.87 (95% CI: 1.47, 5.59) times greater hazard of death from heart disease, cancer, respiratory illness, and dementia, respectively. CONCLUSIONS: Significantly greater risk of mortality from several different causes should be considered alongside the potential costs of screening and intervention for frailty in subspecialty and general geriatric clinical practice. Findings may help investigators estimate the potential impact of frailty reduction approaches on mortality.

"It's Been a Hard Day's Night": Sleep Problems in Caregivers for Older Adults.

PURPOSE OF REVIEW: This paper critically evaluates literature from the last three years on sleep in caregivers for older adults. Research is evaluated in four main areas: factors related to caregivers having sleep problems, sleep health in various types of caregivers, how caregivers' sleep and health inter-relate, and interventions to improve sleep. RECENT FINDINGS: A range of both care recipients' and caregivers' characteristics have been associated with caregiver sleep quality measured subjectively and objectively. Care recipient factors associated with caregiver sleep quality include fall risk and sleep quality, while caregiver factors include stress, duration, intensity, provision of medical/nursing care tasks, and even particular serotonin genotypes (e.g. short allele carriers for 5-HTTLPR). While the greatest focus has been on dementia caregivers, recent work suggests groups such as end-of-life caregivers, former caregivers, and caregivers with multiple care roles (e.g. child, older adult, paid care) have sleep disturbances that vary by their unique contexts. Caregiver's sleep, particularly subjective assessments, relates to their mood and physiological well-being; and evidence suggests that sleep may be an important mediator linking care stressors with mental health. Factors such as mindfulness and sense of coherence may protect caregivers from sleep disturbances.

Till Death Do Us Part: Intersecting Health and Spousal Dementia Caregiving on Caregiver Mortality.

OBJECTIVE: We consider whether it is the healthiest dementia caregivers who experience a mortality benefit and whether a protective association is consistent for leading causes of mortality. METHOD: Using the Health and Retirement study (2000-2012), Cox survival models predict time to death for dementia caregivers, including an interaction between dementia caregiver status and self-rated health. The nationally representative sample consisted of 10,650 married adults aged 51 or older (917 dementia caregivers). RESULTS: A significant interaction between dementia caregiver status and self-rated health suggested that relative to noncaregivers, dementia caregivers had reduced mortality, with this effect particularly strong at lower levels of self-rated health. The protective effect of dementia caregiver status was consistent across death by heart disease, cancer, and cerebrovascular disease. DISCUSSION: These findings add to a growing body of literature suggesting that caregiving may provide a mortality benefit and a reason to maintain health.