"WOOP is my safe haven": A qualitative feasibility and acceptability study of the Wish Outcome Obstacle Plan (WOOP) intervention for spouses of people living with early-stage dementia.

OBJECTIVES: As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. METHOD: For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. RESULTS: Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. CONCLUSIONS: WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. TRIAL REGISTRATION: ClinicalTrials.gov HIC 2000021852.

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.

Self- reported and informal caregiver proxy-reported met needs in persons living with dementia are associated with lower health-related quality of life: a dyadic, cross-sectional study.

OBJECTIVE: 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). METHODS: 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). RESULTS: 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). CONCLUSION: 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.

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.

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.

Navigating the COVID-19 pandemic together: Discussions between persons with early-stage dementia and their adult children.

OBJECTIVES: Studies have separately examined the health impacts of the COVID-19 pandemic on persons with dementia and their caregivers. Less attention has been paid to the social and emotional impacts of the pandemic in this population or how these individuals are mutually coping with the pandemic. Guided by the social citizenship theory, this qualitative study sought to characterize how persons with dementia and their adult children are coping during this time with a focus on the strengths demonstrated by persons with dementia. METHODS: Participants were 43 dyads of individuals aged 55 and older with early-stage dementia and their adult children. Discussions between parent-child dyads were recorded. Using reflexive thematic analysis, themes related to social and emotional impacts of the pandemic and coping strategies were identified. RESULTS: Adult children shared with their parents how the pandemic resulted in reduced social engagement and challenging work arrangements. Dyads described how the pandemic positively impacted their relationship, allowing some of them to spend more time together. In coping with the pandemic, adult children provided instrumental support to their parents and parents reciprocated with emotional support. Participants also coped by making meaning of their situation during discussions. CONCLUSIONS: Findings characterize the resilience of persons with dementia and the mutuality of the relationship between both members of the care partner dyad, as both parents and adult children offered support to one another. Facilitating dyadic discussions may be a cost-effective way to sustain social connections and offer ongoing coping support through the pandemic or other challenging circumstances.

Longitudinal associations between cognitive functioning and depressive symptoms among couples in the Mexican Health and Aging Study.

OBJECTIVE: To examine the bidirectional associations between older adult spouses' cognitive functioning and depressive symptoms over time and replicate previous findings from the United States (US) in Mexico. DESIGN: Longitudinal, dyadic path analysis with the actor-partner interdependence model. SETTING: Data were from the three most recent interview waves (2012, 2015, and 2018) of the Mexican Health and Aging Study (MHAS), a longitudinal national study of adults aged 50+ years in Mexico. PARTICIPANTS: Husbands and wives from 905 community-dwelling married couples (N = 1,810). MEASUREMENTS: The MHAS cognitive battery measured cognitive function. Depressive symptoms were assessed using a modified nine-item Center for Epidemiologic Studies Depression Scale. Baseline covariates included age, education, number of children, limitation with any activity of daily living, limitation with any instrumental activity of daily living, and pain. RESULTS: As hypothesized, there were significant within-individual associations in which one person's own cognitive functioning and own depressive symptoms predicted their own follow-up cognitive functioning and depressive symptoms, respectively. In addition, a person's own cognitive functioning predicted their own depressive symptoms, and a person's own depressive symptoms predicted their own cognitive functioning over time. As hypothesized, there was a significant partner association such that one person's depressive symptoms predicted more depressive symptoms in the partner. CONCLUSION: Findings from this study of older Mexican couples replicates findings from studies of older couples in the US, showing that depressive symptoms in one partner predict depressive symptoms in the other partner over time; however, there was no evidence for cognition-depression partner associations over time.

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.

Diversity of social networks versus quality of social support: Which is more protective for health-related quality of life among older adults?

Both social networks and social support are important in addressing bio-psycho-social events in older adults. Their associations with health-related quality of life (HRQOL), however, are not well understood. This study aims to examine the associations of diversity of social networks and perceived quality of social support with HRQOL in older adults. We used data from 2012 to 2013 National Epidemiological Survey on Alcohol and Related Conditions Wave III (NESARC-III), and included respondents aged 65 or older (n = 5799 unweighted). We used the Social Network Index (SNI) to measure diversity of social connections and the Interpersonal Support Evaluation List (ISEL-12) to measure perceived quality of social support. We also constructed HRQOL (mental component summary (MCS) and physical component summary (PCS)) and quality-adjusted life years (QALYs). We characterized socio-demographic, behavioral, and clinical factors, and HRQOL and QALYs by type of social support. We also used multivariable-adjusted regression analyses to assess the associations of diversity of social networks and perceived quality of social support with HRQOL and QALYs, respectively. Older adults with greater diversity of social networks, regardless of perceived quality of social support, had higher mean scores in HRQOL domains, although effect sizes were small. In multivariable-adjusted analyses, diversity of social networks was positively associated with HRQOL-MCS (coefficient = 0.59; 95% confidence intervals [CI], 0.08-1.09), HRQOL-PCS (coefficient = 1.00; 95% CI, 0.38-1.61), and QALYs (coefficient = 0.01; 95% CI, 0.00-0.02). Perceived quality of social support was not associated with HRQOL. The diversity of social networks, more than perceived quality of social support, may be protective for HRQOL in older adults.

Family Caregiving for Older Adults.

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

Self-Reports and Caregivers' Proxy Reports of Unmet Needs of Persons With Dementia: Implications for Both Partners' Health-Related Quality of Life.

OBJECTIVE: This study examined in a large sample of dementia caregiving dyads the associations between both partners' reports of unmet needs in persons with dementia (PwDs) and both partners' health-related quality of life (HRQOL). METHODS: This was a cross-sectional self-report survey of 521 community-dwelling dyads in a pragmatic trial in the Netherlands. The Camberwell Needs Assessment was used to measure PwDs' unmet needs. Both partners' self-reported their HRQOL using the EuroQol-5. RESULTS: Controlling for covariates, PwDs' self-reported greater unmet needs were significantly associated with PwDs' and caregivers' lower self-reported HRQOL (actor effect; b = -0.044, ß = -0.226, z = -3.588, p <0.001 and partner effect; b = -0.021, ß = -0.131, z = -2.154, p = 0.031). Caregivers' proxy reports were greater than PwDs' self-reported unmet needs (Δ=0.66,χ2(1)=55.881,p<.0001). CONCLUSION: Clinicians should use caution in relying on caregiver proxy reports of PwDs' needs and HQOL alone regarding healthcare decision making.

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.

Enfeeblement in Essential Tremor: Development and Validation of a New Psychometric Measure.

INTRODUCTION: Despite a growing body of knowledge regarding essential tremor (ET), past studies have fallen short in capturing the full impact of ET on patients and caregivers. We propose enfeeblement (i.e., having the qualities of being prematurely old, helpless, or debilitated) as a novel clinical outcome measure in ET. Due to the lack of enfeeblement scales for ET in the literature, we developed and validated an enfeeblement scale for ET. METHODS: The Essential Tremor Enfeeblement Survey (ETES) consists of eight 5-point Likert-type scale questions and is designed to be a caregiver-reported outcome. RESULTS: Enfeeblement scores showed a floor effect of 15.3%, no ceiling effects, and demonstrated good overall test-retest reliability (intraclass correlation coefficient = 0.73), favorable internal consistency (Cronbach α coefficient = 0.92) and good convergent validity. CONCLUSION: The ETES has robust properties. Aside from future studies of enfeeblement in ET, enfeeblement should be explored more broadly as a psychometric measure across other neurological disorders.

Longitudinal Associations Between Cognitive Functioning and Depressive Symptoms Among Older Adult Spouses in the Cardiovascular Health Study.

OBJECTIVE: To examine the bidirectional associations between older adult spouses' cognitive functioning and depressive symptoms over time. DESIGN: Longitudinal, dyadic path analysis with the actor-partner interdependence model. SETTING: Data were from visit 5 (1992/1993), visit 8 (1995/1996), and visit 11 (1998/1999) of the Cardiovascular Health Study, a multisite, longitudinal, observational study of risk factors for cardiovascular disease in adults 65 years or older. Demographic information was from the 1989/1990 original and 1992/1993 African American cohort baseline visits. PARTICIPANTS: Husbands and wives from 1,028 community-dwelling married couples (N = 2,065). MEASUREMENTS: Cognitive functioning was measured with the Modified Mini-Mental State Exam. Depressive symptoms were measured using the 10-item Center for Epidemiologic Studies Depression Scale. Age, education, and disability (activities of daily living and instrumental activities of daily living) were included as covariates. RESULTS: Cross-partner associations (partner effects) revealed that one spouse's greater depressive symptoms predicted the other spouse's lower cognitive functioning, but a spouse's lower cognitive functioning did not predict the other spouse's greater depressive symptoms over time. Within-individual associations (actor effects) revealed that an individual's lower cognitive functioning predicted the individual's greater depressive symptoms over time, but greater depressive symptoms did not predict lower cognitive functioning over time. Effects did not differ for husbands and wives. CONCLUSION: Having a spouse who is depressed may increase one's risk of cognitive decline as well as one's risk of depression. Interventions for preventing cognitive decline and depression among older adults may be enhanced by considering the marital context.

Recalling support provision decreases distress and anger in response to partner suffering.

OBJECTIVES: Thinking about a loved one's suffering can be emotionally stressful and have negative effects on a person's psychological and physical health over time. This study examined the hypotheses that when thinking about a partner's suffering (1) recalling past support provision to the suffering partner can decrease distress and anger and increase compassion, and (2) attachment orientation moderates these effects. METHOD: Seventy-seven older adult spouses of individuals with chronic pain were video-recorded while they disclosed: (1) an instance of partner suffering and (2) an instance of partner suffering plus their support provision. Compassion for the partner and their own distress and anger were self-reported immediately after each account. Accounts were coded for statements of support. Attachment was assessed with the Experiences with Close Relationships measure. RESULTS: As hypothesized, distress and anger were lower in the 'suffering with support' condition versus the 'suffering only' condition. There was no evidence that attachment orientation significantly moderated the effect of support recollection on emotional responses; however, more avoidant individuals reported less compassion and anger and used more words reflecting anger across conditions. More anxiously attached individuals reported greater compassion across conditions. CONCLUSION: When thinking about a partner's suffering, there are attachment-related differences in emotional reactions. Yet, regardless of these differences, it may be adaptive for spouses to think about their role in providing support to their partner to decrease their own negative emotions.

Detection of elder abuse: Exploring the potential use of the Elder Abuse Suspicion Index© by law enforcement in the field.

There are no known instruments to aid law enforcement officers in the assessment of elder abuse (EA), despite officers' contact with older adults. This study aimed to identify: 1) officers' perceptions and knowledge of EA, 2) barriers in detecting EA in the field, 3) characteristics officers value in a detection tool, and to explore 4) the potential for officers to use the Elder Abuse Suspicion Index (EASI)©. Data was collected from 69 Connecticut officers who confirmed that barriers to effectively detecting EA included a lack of EA detection instruments, as well as a lack of training on warning signs and risk factors. Officers indicated that the important elements of a desirable tool for helping to detect EA included ease of use, clear instructions, and information on follow-up resources. Approximately 80% of respondents could see themselves using the EASI

Older Age Associated with Mental Health Resiliency in Sexual Minority US Veterans.

OBJECTIVES: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.

Age Differences in the Association of Social Support and Mental Health in Male U.S. Veterans: Results From the National Health and Resilience in Veterans Study.

OBJECTIVE: To examine the associations between multiple aspects of social support-perceived support, structural support, and community integration-and mental health difficulties in younger and older male veterans. Drawing from Socioemotional Selectivity Theory (SST), we hypothesized that greater support would be more strongly negatively related to mental health difficulties in older than younger veterans. DESIGN: Cross-sectional Web survey of younger and older male veterans recruited from a contemporary, nationally representative sample of veterans residing in the United States. SETTING: Data were drawn from the National Health and Resilience in Veterans Study. PARTICIPANTS: Participants were 290 younger male veterans (mean age: 37.0 years, SD: 6.9, range: 21-46) and 326 older male veterans (mean age: 81.7 years, SD: 3.2, range: 78-96). MEASUREMENTS: Participants completed measures of sociodemographic and military characteristics, perceived and structural social support, community integration, and mental health difficulties. RESULTS: In contrast to SST, higher perceived support was associated with fewer mental health difficulties in younger but not older veterans. In line with SST, community integration was associated with fewer mental health difficulties in older but not younger veterans. Structural support was not associated with mental health difficulties in either group. CONCLUSION: Results of this study provide mixed support for SST and suggest that different aspects of social support may help promote the mental health of younger and older male U.S. veterans. Promotion of community engagement may help promote mental health in older veterans, whereas promotion of functional social support may help promote mental health in younger veterans.

Husbands' and Wives' Physical Activity and Depressive Symptoms: Longitudinal Findings from the Cardiovascular Health Study.

BACKGROUND: When examining older adults' health behaviors and psychological health, it is important to consider the social context. PURPOSE: The purpose of this study was to examine in older adult marriages whether each spouse's physical activity predicted changes in their own (actor effects) and their partner's (partner effects) depressive symptoms. Gender differences were also examined. METHOD: Each spouse within 1260 married couples (at baseline) in the Cardiovascular Health Study completed self-report measures at wave 1 (1989-1990), wave 3 (1992-1993), and wave 7 (1996-1997). Dyadic path analyses were performed. RESULTS: Husbands' physical activity significantly predicted own decreased depressive symptoms (actor effect). For both spouses, own physical activity did not significantly predict the spouse's depressive symptoms (partner effects). However, husbands' physical activity and depressive symptoms predicted wives' physical activity and depressive symptoms (partner effects), respectively. Depressive symptoms did not predict physical activity. CONCLUSION: Findings suggest that husbands' physical activity is particularly influential for older married couples' psychological health.