To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives.
Using consensual qualitative ...research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined.
High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners' joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers' 'pre-caregiving' life, health system failures, and alienation from their care partner. Across high and low points, caregivers' narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing.
Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver's self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.
Abstract
Objectives
Few studies have examined spousal influences on disability in late-life marriage, and no prior study has examined these associations using monthly data. Drawing from ...interdependence theory, we hypothesized that one spouse currently having higher disability would be positively associated with their partner having higher disability in the next month. We also examined whether participants were at risk for increased disability when both spouses had higher prior disability. In addition, we examined gender differences in spousal associations.
Method
Data were from 37 married couples in the Precipitating Events Project, an ongoing longitudinal study of 754 initially nondisabled adults aged 70 years and older. Assessments included monthly disability (13 basic, instrumental, and mobility activities of daily living) and demographics.
Results
As hypothesized, higher disability in one spouse was positively associated with higher subsequent disability in their partner. Also, wives with higher disability were especially vulnerable to subsequent increased disability when husbands had higher disability.
Discussion
Incorporating a spouse’s current disability level in modeling older adults’ subsequent disability provides additional predictive information. Wives with greater disability may be at a particularly high risk of accelerated decline when their husbands have greater disability.
There is overwhelming need for nonpharmacological interventions to improve the health and well‐being of people living with dementia (PLWD). The National Institute on Aging Imbedded Pragmatic ...Alzheimer's Disease (AD) and AD‐Related Dementias Clinical Trials (IMPACT) Collaboratory supports clinical trials of such interventions embedded in healthcare systems. The embedded pragmatic clinical trial (ePCT) is ideally suited to testing the effectiveness of complex interventions in vulnerable populations at the point of care. These trials, however, are complex to conduct and interpret, and face challenges in efficiency (i.e., statistical power) and reproducibility. In addition, trials conducted among PLWD present specific statistical challenges, including difficulty in outcomes ascertainment from PLWD, necessitating reliance on reports by caregivers, and heterogeneity in measurements across different settings or populations. These and other challenges undercut the reliability of measurement, the feasibility of capturing outcomes using pragmatic designs, and the ability to validly estimate interventions' effectiveness in real‐world settings. To address these challenges, the IMPACT Collaboratory has convened a Design and Statistics Core, the goals of which are: to support the design and conduct of ePCTs directed toward PLWD and their caregivers; to develop guidance for conducting embedded trials in this population; and to educate quantitative and clinical scientists in the design, conduct, and analysis of these trials. In this article, we discuss some of the contemporary methodological challenges in this area and develop a set of research priorities the Design and Statistics Core will undertake to meet these goals. J Am Geriatr Soc 68:S68–S73, 2020.
Objective: Research shows that active support provision is associated with greater well-being for spouses of individuals with chronic conditions. However, not all instances of support may be equally ...beneficial for spouses' well-being. The theory of communal responsiveness suggests that because spouses' well-being is interdependent, spouses benefit most from providing support when they believe their support increases their partner's happiness and is appreciated. Two studies tested this hypothesis. Method: Study 1 was a 7-day ecological momentary assessment (EMA) study of 73 spouses of persons with dementia (74%) and other conditions. In Study 1, spouses self-reported active help, perceptions of how happy the help made the partner and how much the help improved the partner's well-being, and spouses' positive and negative affect at EMA time points. Study 2 was a 7-day daily assessment study of 43 spouses of persons with chronic pain in which spouses reported their emotional support provision, perceived partner appreciation, and their own physical symptoms. Results: Study 1 showed that active help was associated with more positive affect for spouses when they perceived the help increased their partner's happiness and improved their partner's well-being. Study 2 showed that emotional support provision was associated with fewer spouse reported physical symptoms when perceptions of partner appreciation were high. Conclusion: Results suggest that interventions for spouses of individuals with chronic conditions take into account spouses' perceptions of their partners' positive emotional responses. Highlighting the positive consequences of helping may increase spouses' well-being.
Essential tremor (ET) is a progressive neurological disease associated with functional disability, diminished quality of life and, in some individuals, poorer balance, cognitive impairment, ...depression and sleep dysregulation. Individuals with ET may rely on family members and friends to act as informal caregivers to assist with daily activities and provide emotional support. There is a high prevalence of embarrassment among individuals with ET, which may be a result of the outwardly visible nature of tremor. Studies in populations with outwardly visible disability have shown that perception by caregivers of a care-recipient's social distress can contribute to caregiver burden. We hypothesize that in ET, perception by caregivers of ET participant embarrassment is a predictor for caregiver burden. Data were collected from 57 ET participants and their caregivers. We measured ET participant embarrassment using the Essential Tremor Embarrassment Assessment (ETEA), and measured perception by caregivers of ET participant embarrassment using a modified version of the ETEA. The Zarit Burden Interview was used to measure caregiver burden. Perceived embarrassment was associated with ET participant embarrassment. In linear regression models, perceived embarrassment was a stronger predictor for caregiver burden than measures of ET participant cognitive and physical impairment. The results indicate that perception of ET participant embarrassment can be burdensome for caregivers. Clinicians may wish to address patient embarrassment and perceived embarrassment to better support caregivers and ET patients.
•Caregivers are attuned to ET patient embarrassment.•Caregiver perception of ET patient embarrassment is associated with caregiver burden.•Perceived embarrassment better than measures of ET impairment as predictor of burden.•Clinicians should address perceived embarrassment to support caregivers.
Objective: Little is known about the cardiovascular effects of mutual emotional spousal support given for health concerns. We examined the hypotheses that: (a) mutual support (both spouses giving and ...receiving support) compared to one-sided or no support, would decrease blood pressure and heart rate in both spouses during a recovery period; and (b) wives would benefit more from mutual support than would husbands. A second aim was to examine gender differences in cardiovascular reactivity, distress, and closeness in response to receiving support regardless of mutuality. Method: In 98 married couples (Age 50+), spouses discussed health concerns and were assigned randomly to one of four conditions: neither spouse received support (n = 26), only the wife received support from the husband (n = 22), only the husband received support from the wife (n = 23), or both received support (n = 27). Systolic and diastolic blood pressure and heart rate were measured during baseline, the discussions, and recovery. Distress, closeness, and support were self-reported. Support quality was observationally coded. Results: Mutual support did not affect cardiovascular reactivity. When husbands received support from wives, husbands' blood pressure and distress decreased, and both partners' closeness increased. When wives received support, husbands and wives felt closer, but both partners' heart rate remained elevated and wives felt more distressed. Conclusions: Receiving support individually may be more important than receiving support mutually for older adult spouses coping with their health concerns. Also, support interventions for couples coping with health conditions should take into account that husbands receive greater benefits from spousal support than wives.
Objectives were to: (a) identify the mental health needs of older and younger sexual minority and heterosexual U.S. veterans and (b) examine whether sexual minority status confers vulnerability or ...resiliency in older adulthood. Support and trauma exposure were examined as potential mechanisms for age by sexual orientation differences.
Participants were a nationally representative sample of 3,095 U.S. veterans (ages 21 to 96 years). Measures included demographics, military characteristics, sexual orientation (lesbian, gay, or bisexual; LGB), social support, trauma, and mental health indicators (lifetime and present depression and post-traumatic stress disorder (PTSD); lifetime anxiety and suicidal ideation).
Younger LGB veterans were most likely to report lifetime depression and/or PTSD and current depression compared with older LGB and younger and older heterosexual veterans. Older LGB veterans had low levels of mental health problems, but they reported the smallest social support networks.
Older and younger LGB veterans have different mental health challenges. Younger LGB veterans are more vulnerable to mental health problems than their older LGB peers. Older LGB veterans are resilient, but they may be at greater risk of social isolation than their younger LGB peers.
In this commentary we return to the original question of Wanic and Kulik’s paper, “Why do men
benefit
more from marriage than do women?” We suggest that trying to understand why women suffer more ...than men in marriage (from conflict or for any other reason) will not, by itself, answer the question. The answers are certainly multifaceted and complex, and there is little reason to pit one possible answer against another. We highlight that when examining gender differences in health in marriage it is important to (a) consider the helpful processes in combination with hurtful ones, b) take a broad view on this question including many types of social processes, and c) consider processes that occur outside of marriage as well as those that occur inside of marriage.
Discrete choice experiments (DCEs) may facilitate persons with dementia and informal caregivers to state care preferences. DCEs can be cognitively challenging for persons with dementia.
This study ...aims to design a dementia friendly dyadic DCE that enables persons with dementia and informal caregivers to provide input individually and jointly, by testing the number of attributes and choice tasks persons with dementia can complete and providing insight in their DCE decision-making process.
This study included three DCE rounds: 1) persons with dementia, 2) informal caregivers, and 3) persons with dementia and informal caregivers together. A flexible DCE design was employed, with increasing choice task complexity to explore cognitive limitations in decision-making. Summary statistics and bivariate comparisons were calculated. A qualitative think-aloud approach was used to gain insight in the DCE decision-making processes. Transcripts were analyzed using thematic analysis.
Fifteen person with dementia, 15 informal caregiver, and 14 dyadic DCEs were conducted. In the individual DCE, persons with dementia completed six choice tasks (median), and 80% could complete a choice task with least three attributes. In the dyadic DCE persons with dementia completed eight choice tasks (median) and could handle slightly more attributes. Qualitative results included themes of core components in DCE decision-making such as: understanding the choice task, attribute and level perception, option attractiveness evaluation, decision rule selection, and preference adaptation.
Persons with dementia can use simple DCE designs. The dyadic DCE was promising for dyads to identify overlapping and discrepant care preferences while reaching consensus.
This study examined the dyadic association of self and informal caregiver proxy-reported met needs in persons living with dementia on the health-related quality of life (HRQOL).
A total of 237 ...persons with dementia and their caregivers were included from a previous observational study. HRQOL was assessed by the EuroQol-5D and the number of met needs by the Camberwell Assessment of Needs for the Elderly. The Actor-Partner Interdependence Model framework was used to analyze the effect of an individual's self or proxy-reported met needs on their own HRQOL (actor effects), and an individual's self or proxy-reported met needs on the other dyad member's HRQOL (partner effects).
The number of self-reported met needs by persons living with dementia was negatively associated with their own HRQOL (actor effect b = −0.200, p < 0.001), and the HRQOL of informal caregivers (partner effect b = −0.114, p = 0.001). The number of proxy-reported met needs by informal caregivers was negatively associated with their own HRQOL (actor effect b = −0.105, p < 0.001) but not the person living with dementia's HRQOL (-0.025, p = 0.375).
Study findings suggest that both self-reported and informal caregiver proxy-reported met needs in persons living with dementia should be considered in research and practice because they have different implications for each dyad members' HRQOL.
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