Long-term care placement: The transitional support needs and preferences of spousal dementia caregivers

Background and objectives Many spousal caregivers experience stress, depression, loneliness, guilt and grief when placing a partner with dementia into long-term care. However, there is little research about their transitional support experiences, needs and preferences. This study aimed to gain a deeper understanding of these issues from spousal caregiver and long-term care facility staff perspectives, to inform subsequent support and intervention development. Research design and methods Semi-structured interviews and small group discussions were held separately with spousal caregivers ( n = 9) and care facility staff ( n = 11). Criterion and variation sampling aimed to ensure a range of experiences and perspectives. The ‘Framework’ approach was utilised for data analysis. Interpretation was with respect to underpinning models of stress-grief process in dementia caregiving. Findings A range of informational, psychoeducational and psychosocial supports were identified to help spousal caregivers cope better with the stressors and losses experienced throughout the transition from home to long-term care. Improved education about disease progression, information relating to long-term care provision, peer support and dementia-specific grief counselling were deemed important. Opportunities for better support within care facilities were also identified. Support should be tailored to individual needs and preferences. Discussion and implications The findings suggest a supportive care framework be developed, encompassing the trajectory from assessment for and admission into long-term care to end-of-life and post-bereavement support. Spousal caregivers should have their support needs assessed by trained health or social care professionals and be offered a range of support options as appropriate.

Being There: Exploring Virtual Symphonic Experience as a Salutogenic Design Intervention for Older Adults

This co-design study examined salutogenic potential of mobile virtual reality (VR) experiences as an alternative to participation in a community-based symphonic engagement program (B Sharp), previously found to benefit people with dementia (PWD) and their informal caregivers. Six focus groups were conducted with sixteen adults aged 76–90; three participants had dementia, and two were informal spousal caregivers. No participants had prior VR experience. The study assessed the feasibility of replicating the community-based-arts program in VR, with the goal of enhancing its salutogenic qualities (e.g., positive distraction, engagement, and social connection). Video-recordings of participants while using a mobile head-mounted display (HMD) were analyzed using qualitative thematic analysis to compare perceptions of different virtual experiences, including replication or enhancement of B Sharp and a campus tour. Findings suggest participants had positive perceptions of enhanced VR experiences with no adverse effects, although PWD were less enthusiastic and HMD usability was complicated by eyewear use and comfort with technology. Participants reacted most favorably to the enhanced symphonic experience, where they were “virtually” onstage during the performance, suggesting unique experiences beyond what is possible in the real world have the greatest potential for deep immersion for older adults. Results suggest VR has strong potential to replicate and enhance salutogenic qualities of community-based programming by enabling greater access to experiences for older adults and by increasing enjoyment and engagement through experiences not otherwise feasible. Furthermore, this study illuminates advantages of a user-centered, co-design approach when developing VR experiences with community partners and older adults.

Prevalence of Binge Drinking by Caregivers of Persons with Alzheimer’s Disease or Related Dementia

Some caregivers of persons with Alzheimer’s Disease and related dementias (ADRD) are known to be under high levels of burden, which is associated with higher levels of anxiety, depression, and stress. Previous research has established anxiety, depression, and stress are associated with binge drinking, but little research has examined binge drinking rates among ADRD caregivers. Binge drinking could influence the ability of ADRD caregivers to provide care. The purpose of this study was to explore the prevalence and prevalence correlates of binge drinking among ADRD caregivers using the 2019 Behavior Risk Factor Surveillance Survey (BRFSS). We identified N = 1,642 persons who were the primary informal caregivers of a person with ADRD. Among them, the prevalence of binge drinking was 14 per 100 persons. Bivariable analyses suggested male caregivers and caregivers with 14 or more days of poor mental health in the past 30 days had the highest prevalence of binge drinking at 18 per 100 persons. Caregivers who were 65 or older or had the lowest prevalence at 3 per 100 persons. Caregiving characteristics revealed providing 20 to 39 hours of care per week had the highest prevalence of binge drinking (17 per 100) whereas spousal caregivers (9 per 100) had the lowest prevalence. Smoking status and hours per week providing care were associated with higher odds of binge drinking in multivariable analyses. Future research should examine if binge drinking by ADRD caregivers is related caregiver burden and the quality of care provided to the persons with ADRD.

Effects of Relationship Type on Quality of Life in Older Adults with Cognitive Impairment and the Informal Caregivers

Purpose The purpose of this study was to assess whether there was an association between care-recipient relationship type and the QoL of older adults and their informal caregivers, and whether this association pertained to older adults’ cognitive function. Methods This was a secondary data analysis. Older adults (n=1230) and their informal caregivers (n=1871) were identified from participants in the National Health and Aging Trends Study (NHATS) Round 5 and the National Study of Caregiving (NSOC) II. A series of bivariate and multivariable regression models examined the associations among the care-recipient relationship type and QoL in older adults and their informal caregivers, adjusted for socio-demographic variables as well as cognitive functioning. Results Both older adults and caregivers’ QoL outcomes varied by the type of relationship. Recipients cared for by adult-child caregivers or multiple caregivers experienced higher functional limitation than those cared by spousal caregivers (β=.79, CI [.39, 1.19]; β=.50, CI [.17, .82], respectively). “Other” caregivers, such as siblings, friends, etc., had lower odds of experiencing negative emotional burden than spousal caregivers (OR=.26, CI [.13, .52]; OR=.53, CI [.35, .81], respectively). "Other" caregivers were also 51% less likely to experience social strain than spousal caregivers. Lower odds of experiencing negative emotional burdens were also found with multiple caregivers. The association between adult-child caregivers and social strain was explained by the recipients’ cognitive function. Conclusions Care-recipient relationship type impacts the QoL in both recipients and their informal caregivers. This association appears to be affected by care recipients' cognitive function level.

Perceived Neighborhood Disorder, Social Cohesion, and Depressive Symptoms among Spousal Caregivers

Most prior research on caregivers’ mental health focused on individual or household factors, we know much less about the influence of neighborhood factors on mental health of spousal caregivers. The current study fills the gap in our knowledge by examining the association of neighborhood characteristics (i.e., perceived neighborhood disorder and neighborhood social cohesion) and depressive symptoms among spousal caregivers. We used data from 2006 to 2016 waves of the Health and Retirement Study, which includes 2,362 spousal caregivers. Negative binomial regression models were estimated to examine the association of perceived neighborhood disorder and neighborhood social cohesion with depressive symptoms. A greater perceived neighborhood disorder was associated with higher CES-D scores, which indicates more depressive symptoms. On the other hand, a higher level of neighborhood social cohesion was associated with lower CES-D scores. When they were included in the same model, the association between neighborhood disorder and depression disappeared, while respondents who reported higher levels of neighborhood social cohesion continue to exhibit lower CES-D scores than those lived in less cohesive neighborhoods. This study highlights the importance of neighborhood contexts in understanding caregivers’ well-being. Findings of this study suggest that neighborhood social cohesion may attenuate the negative effects of neighborhood disorder. Therefore, enhancing positive characteristics of the neighborhood may promote well-being of spousal caregivers.

Longitudinal Effects of Cultural and Psychosocial Factors on Biomarkers of Cardiovascular Risk in Caregivers

Dysfunctional thoughts about caregiving (DTAC) and familism (i.e. familistic obligation) were associated with worse caregiver emotional and cardiovascular health in cross-sectional studies. The aim of this study was to longitudinally examine the effects of familism and DTAC on cardiovascular health, considering caregiver kinship adjusting for well-established predictors of cardiovascular health. Study participants were 80 family dementia caregivers. Individual interviews and collection of blood samples were conducted in three yearly assessments. Linear mixed (random effects) regression analysis was performed to examine longitudinal associations of familism, DTAC, and circulating levels of cytokine interleukin (IL)-6, a cytokine and biomarker of cardiovascular disease risk (CVD). Caregiver age, gender, alcohol consumption, body mass index (BMI), hours caring, frequency and reaction of behavioral problems and caregivers’ transitions were used as covariates. Results showed that increases in DTAC, in familism and higher caregiver age were independently and significantly associated with higher levels of IL-6 over time in the group of spousal caregivers. No significant effects were found for any of the other covariates in spousal caregivers. In contrast, increases in BMI and in frequency of behavioral problems were significantly associated with increases in IL-6 over time in adult child caregivers. No significant effects were found for any of the rest of predictors in adult child caregivers. Findings suggest that high level of obligation familism and DTAC may a profile of increased vulnerability for CVD in spousal caregivers. In contrast, problem behaviors of the care recipient may characterize adult child caregivers in terms of an increased CVD risk.

Connecting the Dots: Pain Mental Models of Spousal Caregivers of Veterans with Dementia and Pain

Pain is prevalent among persons with dementia (PWDs), yet often goes underrecognized and undertreated. Exploring caregivers’ pain mental models may provide valuable insight into how they conceptualize pain, and how such conceptualizations affect their identification of and response to PWDs’ pain. We identified and described the pain mental model(s) of spousal caregivers of community-dwelling veterans with dementia and pain through a secondary qualitative thematic analysis of recordings of a psychosocial intervention aimed at preventing aggression in PWDs with pain. Thirty female spousal caregivers (11 Black, 10 non-Hispanic White, and 9 Hispanic) comprised the present sample. Two themes were identified: Pain Assessment Beliefs and Knowledge (PA) and Pain Management Beliefs and Knowledge (PM). In our proposed mental model framework, PA and PM affect the ways caregivers answer two PA-related questions (Is there a problem?, Is this problem pain?) and three PM-related questions (Is the pain treatable?, Is it worth treating?, How do I prefer to treat it?). Caregivers are moved to action when they “connect the dots” by identifying a problem in PWDs’ behavior, labeling the problem as pain, and identifying a response (i.e., a treatment approach) they consider worth trying. Disconnects in caregiver understanding of PWDs’ behavior are common in this sample, and predictably lead to inaction. The proposed mental model provides further explanation about how caregivers do or do not synthesize and apply pain knowledge and experience, allowing for the identification of potential areas of intervention (e.g., pain psychoeducation) to improve pain treatment for the PWDs under their care.

Does Personal Goal Pursuit Alleviate Family Caregiver Stress?

Family caregivers may experience reduced stress by maintaining their sense of self throughout their time in a caregiving role. Working towards personal goals is helpful for maintaining a sense of self, but pursuing one’s own goals amidst caregiving responsibilities may be challenging. In this study, we analyze the processes by which caregivers pursue their own personal goals – and how those processes impact daily stress – in an effort to develop a deeper understanding of goal-pursuit as a potential caregiver stress-reducing strategy. We utilized daily data from spousal (N=256 days) and adult-child (N=400 days) caregivers who participated in the PULSE (Personal Understandings of Life and Social Experiences) Project, a 100-day microlongitudinal study on goal pursuit amongst people 50 and older (Hooker et al., 2013). In daily surveys, caregivers reported progress made towards a personally-identified health and social goal, along with a 4-item measure of daily stress. We ran multi-level models to assess how daily goal progress was associated with same-day stress. Spousal caregivers’ daily stress was lower on days when their health goal (Estimate = -1.07, SE = 0.20, p<.0001) and social goal (Estimate = -0.97, SE = 0.15, p<.0001) progress was higher. Similarly, adult-child caregivers’ daily stress was lower on days when their health goal (Estimate = -0.67, SE = 0.19, p<.001) and social goal (Estimate = -0.52, SE 0.24, p=0.03) progress was higher. Results support the hypothesis that maintaining personally-meaningful goals can alleviate caregiver stress, and is a promising tool for caregiver health promotion.

Dyadic Relationships Between Self-Rated Health and Cognition Among Older Adults and Their Spousal Caregivers

This study examines spouses who are in a caregiving situation to discern how they influence each other’s health. Previous studies reported health concordance and cross-domain effects among caregiver and care-recipient dyads. However, it is less understood of the health dyadic relationships among spouses who are in a caregiving situation. No studies have specifically looked into the relationship between self-rated health (SRH) and cognitive functioning among spousal caregiving dyads over time. In this study we analyzed the longitudinal reciprocal relationships between SRH and cognitive functioning measured by the Telephone Interview for Cognitive Status among older adults and their spousal caregivers, and whether the relationship differed by whether husband or wife was the caregiver. Longitudinal data from the Health and Retirement Study (2010-2016) on 540 dyads were pooled and analyzed using structural equation modeling under an actor-partner interdependence model. Results revealed cognitive concordance among older spouses in which caregivers’ cognition is associated with care-recipients’ cognition subsequently (β=0.05, p<.05). SRH concordance was not significant. Cross-domain results showed only one significant direction, that is, care-recipients’ cognition in the subsequent time was significantly correlated with caregivers’ SRH, regardless of whether husband (β=0.09, p<.05) or wife (β=0.08, p<.05) was the caregiver. Our study found that married couples in a spousal caregiving situation displayed cognitive but not overall health concordance, and cross-domain effects of caregiver’s SRH on spousal care recipient’s cognition subsequently. The reciprocal associations suggest that addressing and improving either partner’s physical health and cognition may benefit both dyad members.