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.

Trajectories of Purpose in Life Across Diagnosis of Alzheimer's Disease or Related Dementias in Older Adulthood.

Objectives: Sense of purpose serves as a psychological resource for late-life health. Limited research has examined how purpose changes across chronic illness diagnoses, including a diagnosis of Alzheimer's disease and related dementias (ADRD).Method: This study leverages data from the National Health and Aging Trends Study (NHATS; N = 831) to establish trajectories of purpose across ADRD diagnosis using three-year (pre-diagnosis, year of diagnosis, post-diagnosis) timespans and two comparison groups (heart disease diagnosis, no diagnosis). Results: We observed a longitudinal decrease in purpose in the ADRD diagnosis group, t = 3.85, p = .003, d = -0.258. This contrasts with heart disease diagnosis and no diagnosis groups, where purpose did not change over time. Discussion: Older adults who receive an ADRD diagnosis may be vulnerable to a decreasing sense of purpose across their diagnosis experience. We consider social, psychological, and clinical antecedents for this trend.

"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.

'If I don't take care of me, then I can't be there for others:' a qualitative study of caregiving relationships among older women living with HIV.

OBJECTIVE: The population of women ages 50 years and older living with HIV is increasing. Yet, little is known about the care networks that older women living with HIV (OWLH) use to manage their health. The goal of this study was to explore the caregiving and care receiving relationships among OWLH and how these relationships impact HIV management. METHODS: OWLH aged 50 years and older were recruited from clinics and community-based organizations across the U.S. We conducted semi-structured, in-depth phone interviews and performed content and thematic analysis on transcripts. RESULTS: Participants (N = 23) were on average 60 years old and had been living with HIV for an average of 23.7 years. Participants 1) relied on diverse care networks; 2) were caregivers for grandchildren and parents; 3) had pride and joy in being caregivers; and 4) were highly proactive in their own HIV management. Care networks promoted self-love and acceptance. However, concerns about aging with HIV were still highly prevalent. CONCLUSION: Being a caregiver and care recipient are sources of meaning and strength to help OWLH manage HIV. Public health programs should consider engaging both OWLH and their care networks in healthcare discussions and educational efforts.

Gender-based stigma and the prevention and treatment of HIV/AIDS among older women: A scoping review protocol.

INTRODUCTION: The population of women aged 50 years and older living with HIV is increasing. Older women face unique challenges in the prevention and management of HIV; however, they are often under engaged in HIV/AIDS research. One such challenge is gender-based stigma, which can be manifested through harmful gendered stereotypes, discrimination, prejudice, and sexism that could potentially hinder HIV care engagement among this population. We propose a scoping review to identify and synthesize evidence pertaining to how experiences of gender-based stigma impacts HIV prevention and care among older women. MATERIALS AND METHODS: We will use the framework by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) to conduct this scoping review. We will search MEDLINE/PubMed, Web of Science, PsycINFO, CINAHL and Scopus for empirical literature published between January 1981 and the date of search commencement. Supplementary screening will be conducted using backwards citation chaining of the final list of included full-text articles. Two reviewers will independently screen all titles and abstracts for articles that meet the predetermined inclusion criteria. Two reviewers will also screen full-text articles and chart data using a standardized data collection form. RESULTS: We will synthesize the findings through tables, charts, and narrative summaries. We will also identify gaps in the current literature and provide recommendations for future research. Findings will be shared at conferences and submitted to a peer-reviewed publication. DISCUSSION: To our knowledge, this will be the first scoping review to examine gender-based stigma in relation to HIV prevention and care among older women. We anticipate that our results will be of interest to older women living with HIV, healthcare providers, policy makers, and community activists working to improve quality of life and care experiences for older women living with HIV.

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.

Community-Engaged Recommendations for Empowering People Living With Dementia to be Research Collaborators.

As cases of Alzheimer's disease and related dementias (ADRD) increase worldwide, research design has placed additional emphasis on social and behavioral factors that affect ADRD symptomatology and quality of life. Despite this, few studies have incorporated people living with ADRD as research partners. We propose 5 community-engaged recommendations for incorporating people living with ADRD into future research as full collaborators. The proposed recommendations center the experiences of people living with ADRD as crucial contributions to scientific inquiry. The guidelines are based on experiences at a 2-day "Empowering Partnerships" workshop in 2019; post workshop activity continued through 2021 with ongoing collaborations, analysis, and reflective practice. The workshop and subsequent conversations engaged a network of people living with ADRD, informal carepartners, and researchers to collectively build their capacities to partner in all aspects of person-centered research. To empower people living with ADRD as research partners, we recommend that research teams (a) create a flexible schedule of communication and/or meetings to accommodate a wide range of ADRD symptoms, (b) generate team-specific communication strategies/guidelines, (c) incorporate lived experiences of people living with ADRD into research protocols, (d) involve people living with ADRD in all aspects of a project, beginning in the developmental stages, and (e) incorporate skilled facilitators to facilitate communication between stakeholder groups. This multi-vocal approach to research will diversify ADRD research and ensure that projects align with the priorities and capacities of principal stakeholders by incorporating individuals with a wide range of cognitive capabilities that more fully represent the diversity of ADRD experiences.

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.

Rewriting the Story of Mid- and Late-Life Family Caregiving: Applying a Narrative Identity Framework.

Family caregivers of older people with health needs often provide long-term, intensive support. Caregivers are, in turn, shaped by these caregiving experiences. According to the narrative identity framework, self-narratives from lived experiences influence self-beliefs and behaviors. We assert that family caregiving experiences, filtered through individuals' memory systems as self-narratives, provide substantial scaffolding for navigating novel challenges in late life. Self-narratives from caregiving can guide positive self-beliefs and behaviors, leading to constructive health-focused outcomes, but they also have the potential to guide negative self-beliefs or behaviors, causing adverse consequences for navigating late-life health. We advocate for incorporating the narrative identity framework into existing caregiving stress models and for new programs of research that examine central mechanisms by which caregiving self-narratives guide self-beliefs and behavioral outcomes. To provide a foundation for this research, we outline 3 domains in which caregiving self-narratives may substantially influence health-related outcomes. This article concludes with recommendations for supporting family caregivers moving forward, highlighting narrative therapy interventions as innovative options for reducing the negative consequences of maladaptive caregiving self-narratives.

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.

Associations between dementia staging, neuropsychiatric behavioral symptoms, and divorce or separation in late life: A case control study.

Dementia can be difficult for married couples for many reasons, including the introduction of caregiving burden, loss of intimacy, and financial strain. In this study, we investigated the impact of dementia staging and neuropsychiatric behavioral symptoms on the likelihood of divorce or separation for older adult married couples. For this case-control study, we used data from the National Alzheimer's Coordinating Center (NACC) Uniform dataset (UDS) versions 2 and 3. This dataset was from 2007 to 2021 and contains standardized clinical information submitted by NIA/NIH Alzheimer's Disease Research Centers (ADRCs) across the United States (US). This data was from 37 ADRCs. We selected participants who were married or living as married/domestic partners at their initial visit. Cases were defined by a first divorce/separation occurring during the follow-up period, resulting in 291 participants. We selected 5 controls for each married/living as married case and matched on age. Conditional logistic regression estimated the association between overall Neuro Psychiatric Inventory (NPI) score and severity of individual symptoms of the NPI with case/control status, adjusted for education, the CDR® Dementia Staging Instrument score, living situation, symptom informant, sex, and race. Separate analyses were conducted for each symptom. Multiple comparisons were accounted for with the Hochberg method. Later stage of dementia was negatively associated with divorce/separation with an adjusted odds ratio (AOR) = 0.68 (95%CI = 0.50 to 0.93). A higher overall NPI score was positively associated with divorce/separation AOR = 1.08 (95% CI = 1.03 to 1.12,). More severe ratings of agitation/aggression, depression/dysphoria, disinhibition, and elation/euphoria were associated with greater odds of divorce/separation. Among older adults in the US, a later stage of dementia is associated with a lower likelihood of divorce or separation, while having more severe neuropsychiatric behavioral symptoms of agitation/aggression, depression/dysphoria, disinhibition, and elation/euphoria are associated with a higher likelihood of divorce or separation.

Implicit and Explicit Dehumanization of Older Family Members: Novel Determinants of Elder Abuse Proclivity.

Elder abuse affects one in six older persons globally. Three limitations impede progress in prevention: most research is victim- rather than perpetrator-based; the reliance on explicit, self-reported factors; and failure to account for psychological factors, such as dehumanization, that motivate abuse. The current study addressed these gaps by examining whether implicit and explicit dehumanization of t could explain elder abuse proclivity. In a web-based survey of 585 family caregivers of older persons, dehumanization was found to be prevalent with 51% of the caregivers implicitly and 31% explicitly dehumanizing older persons. As predicted, implicit and explicit dehumanization contributed to elder abuse proclivity (OR = 1.23, 95% CI = 1.02-1.50, p = .03) and (OR = 1.26, 95% CI = 1.05-1.51, p = .01), respectively, after adjusting for relevant covariates including caregiver burden, and caregivers' and care-recipients' health. Developing caregiver-based interventions to humanize older persons may complement ongoing efforts in reducing elder abuse.

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.