Emotion regulation in people living with dementia and their spouses: the role of neuropsychiatric symptoms.

OBJECTIVES: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD's neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PwD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects. METHOD: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation. RESULTS: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP's difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD's self-reported difficulties in emotion regulation. CONCLUSION: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD's emotion regulation capability and not be biased by CP's difficulties in emotion regulation.

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.

Former dementia caregivers' high and low point narratives: what is remembered, and how is it shared?

OBJECTIVES: To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives. METHODS: Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined. RESULTS: 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. CONCLUSION: 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.

Personal Health Planning in Adult-Child Former Caregivers of Parents Living With Dementia.

PURPOSE: To examine how former caregivers for parents living with dementia engage in personal health planning. DESIGN: An inductive, qualitative study. SETTING: Virtual, audio-recorded, semi-structured interviews. PARTICIPANTS: Thirty-two midlife former primary caregivers for parents who died following advanced dementia 3 months to 3 years prior. METHOD: Participants responded to a series of open-ended interview prompts. Interview recordings were transcribed and evaluated by a trained, diverse team to generate Consensual Qualitative Research (CQR) domains and categories. RESULTS: Caregivers developed health planning outlooks (ie, mindsets regarding willingness and ability to engage in personal health planning) that guided health planning activities (ie, engaging in a healthy lifestyle, initiating cognitive/genetic testing, maintaining independence and aging in place, ensuring financial and legal security). An agentic outlook involved feeling capable of engaging in health planning activities and arose when caregivers witnessed the impact and feasibility of their parents' health planning. Anxiety-inducing and present-focused outlooks arose when caregivers faced barriers (eg, low self-efficacy, lack of social support, perception that parent's health planning did not enhance quality of life) and concluded that personal health planning would not be valuable or feasible. CONCLUSION: Caregiving for a parent living with dementia (PLWD) shapes former caregivers' personal health planning. Interventions should support former caregivers who have developed low self-efficacy or pessimistic views on healthy aging to support them in addressing health planning activities.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

BACKGROUND: Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. METHOD: A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. RESULTS: Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). CONCLUSIONS: Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

Social participation and marital satisfaction in mid to late life marriage.

Objectives: Research shows that social participation is beneficial for overall health and well-being. Yet, no research to our knowledge has examined whether social participation is associated with greater marital satisfaction in middle-aged and older couples. We hypothesized that middle-aged and older adults would have greater marital satisfaction when their spouse engaged in social groups because there would be greater opportunity for self-expansion and for social support from ties outside the marriage. Methods: We used background self-report data from a multi-method study of 98 middle-aged and older adult married couples (N = 196) with chronic conditions. As part of the study, spouses completed questionnaires that measured the frequency and intensity of involvement in social groups (e.g., church, business groups). Marital satisfaction was measured with the Locke Wallace Marital Adjustment Test. Results: Contrary to our hypotheses, results from actor-partner interdependence models provided no evidence that one's own social participation was associated with one's own marital satisfaction (actor effects). However, in line with our hypotheses regarding partner effects, one spouse's (a) report of any social participation with church organizations, business groups, or social groups, (b) greater number of affiliations with different organizations, (c) greater frequency of participation, and (d) being an active officer in a social organization were significantly associated with the other spouse's greater marital satisfaction. Discussion: Findings of this study suggest that having a spouse who participates in social groups is good for relationship satisfaction in mid to late life marriage.

Family Communication in Long-Term Care During a Pandemic: Lessons for Enhancing Emotional Experiences.

OBJECTIVE: Family visits with residents at long-term care (LTC) facilities have been restricted during the COVID-19 pandemic. The objective was to examine what communication methods, other than in-person visits, during the pandemic were associated with greater positive and lower negative emotional experiences for LTC residents and their family members and friends. DESIGN: Cross-sectional. SETTING: Nationally targeted online survey. PARTICIPANTS: One hundred sixty-one community-dwelling adults who had a family member or friend in a LTC facility. MEASUREMENTS: The Positive and Negative Affect Scale was used to assess participant's own emotions and perceived resident emotions during the pandemic. Questions were asked about nine communication methods other than physical visits (e.g., phone, video-conference, e-mail, and letters) in terms of frequency of use during the pandemic. Sociodemographics, resident health, and facility factors were assessed and used as covariates where indicated. RESULTS: During the pandemic, greater phone frequency was associated with less participant negative emotions (ß = -0.17). Greater e-mail frequency was associated with more perceived resident positive emotions (ß = 0.28). Greater frequency of letters delivered by staff was associated with more participant negative emotions (ß = 0.23). Greater frequency of letters delivered by staff and the postal service were associated with more perceived resident negative emotions (ß = 0.28; ß = 0.34, respectively). CONCLUSION: These findings highlight the importance of synchronous, familiar methods of communication like the phone and email between families and LTC residents to maintain their emotional well-being when in-person visits are restricted.