Spousal Care Partners Research Articles

Designing a mobile application to promote physical activity in spousal care partners of persons living with dementia and their care-recipient.

Background: Care partners of persons living with dementia and their care-recipient have low levels of physical activity. Mobile applications have demonstrated effectiveness in promoting physical activity among older adults. The purpose of this study was to explore the perceptions of spousal care partners of persons with dementia and their care-recipient on the design and content of a mobile application intended to promote physical activity.Methods: Semi-structured interviews were conducted with 14 care partners and their care-recipient. After the interviews were transcribed verbatim, thematic analysis was performed.Results: Four themes emerged from the participants' responses related to the design and content of a mobile application to promote physical activity: 1) exercise preferences and habits, 2) barriers to exercise, 3) motivations for exercise, and 4) mobile application preferences and supportive features.Conclusion: Findings lay the foundation for designing an effective user-friendly mobile application to promote physical activity that caters to the diverse needs, preferences, and challenges among spousal care partners of persons with dementia and their care-recipient.

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.

EXAMINING A RANDOMLY ASSIGNED MUSIC PROGRAM ON STRESS AND WELLNESS: CARE PARTNERS OF OLDER ADULTS LIVING WITH DEMENTIA

Abstract OBJECTIVE The Mason CARES study examined the effects of a randomly assigned personalized music intervention (Phase II) for care partners of older adults living with dementia after implementation of a 9-week virtual stress management program (Phase I) to reduce stress and increase well-being. METHODS A total of 99 care partners completed the 20-week study across three cohorts in 2022. Baseline data on care partner stress levels and well-being were collected before beginning a 9-week stress management program (Phase I). Care partners were randomly assigned to a 4-week music intervention treatment or control group before the next stage of the intervention (Phase II). Researchers assisted care partners with identifying their family member’s favorite music during early adulthood years. MP3 players loaded with the favorite music were mailed to treatment group members. Focus groups were conducted to explore the utilization of personalized music. RESULTS: Nearly half (49%) were spousal care partners, ranging from 35-85 years old with 80% having at least a 4-year college degree, and 62% having an income greater than $70,000. Using ANOVAs to analyze mean stress levels and well-being, no significant differences in stress and well-being were found between the treatment and control groups. CONCLUSION: Despite the lack of statistically significant findings, preliminary analysis of focus group interviews revealed that many care partners benefited from the personalized music intervention. Effectiveness may depend on other factors, such as familiarity with using the technology, past experiences with music, care partner’s baseline level of stress, and the older adult’s stage of dementia.

PROVIDER PERCEPTIONS OF FACTORS IMPACTING COUPLES’ EMOTIONAL DISTRESS AND ADJUSTMENT TO DEMENTIA DIAGNOSES

Abstract Alzheimer’s disease and related dementias (ADRD) are increasingly common conditions that disrupt the lives of persons living with dementia and their spousal care-partners. At the time of ADRD diagnoses, many couples experience challenges that produce emotional distress and relationship strain. At present there are no interventions to address these challenges early after diagnosis to promote positive dyadic adjustment. As the first phase of a larger study, we conducted a qualitative study to elicit and systematically summarize the perspectives of ADRD medical stakeholders (e.g., neurologists, geriatricians, social workers, neuropsychologists, care coordinators) surrounding common factors impacting distress following ADRD diagnoses. Participants (n=15) were recruited from two U.S. academic medical centers and completed a 60-minute focus group or individual interview that was transcribed, deidentified, and analyzed using a rapid data analysis approach to thematic analysis. We identified findings within 3 overarching themes: reactions to diagnosis, changes in relationship roles/dynamics, and insufficient resources. Participants described couples’ distress surrounding one partner’s denial or lack of insight into the diagnosis and symptoms, experiences of loss and hopelessness, and uncertainty surrounding illness trajectory. They noticed changes in couples’ historic roles, social determinants of health, and divergent understandings and reactions to diagnosis as contributors to couples’ distress. Finally, providers observed unmet needs surrounding embedded counseling, care-planning, and financial support for current and future care needs. Most providers felt insufficiently prepared to help couples experiencing distress. Our findings underscore the importance of improving resources to address individual, interpersonal, and system-level factors that contribute to couples’ adjustment to ADRD diagnoses.

Care Partner Confidence and Experiences in Legal Planning for People Living With Dementia: A Mixed-Methods Study.

Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks. This study used a parallel mixed-methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data. Care partners were, on average, 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p < .001); lower- and higher-income care partners (p = .01); and adult child versus spousal care partners (p < .001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences. It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.

Focus Group Study of Medical Stakeholders to Inform the Development of Resilient Together for Dementia: Protocol for a Postdiagnosis Live Video Dyadic Resiliency Intervention.

Alzheimer disease and related dementias (ADRD) are increasingly common conditions that disrupt the lives of persons living with dementia and their spousal care partners. At the time of ADRD diagnoses, many couples experience challenges that produce emotional distress and relationship strain. At present, there are no interventions to address these challenges early after diagnoses to promote positive adjustment. The study protocol described here is part of the first phase of a larger program of research that aims to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention to be delivered over live video early after diagnosis, with the goal of preventing chronic emotional distress. This study will elicit and systematically summarize perspectives of ADRD medical stakeholders to inform the procedures (eg, recruitment and screening methods, eligibility, timing of intervention, and intervention delivery) of the first iteration of RT-ADRD prior to pilot-testing. We will recruit interdisciplinary medical stakeholders (eg, neurologists, social workers, neuropsychologists, care coordinators, and speech language pathologists) from academic medical center clinics in the departments treating persons living with dementia such as neurology, psychiatry, and geriatric medicine via flyers and word-of-mouth referrals from clinic directors and members of relevant organizations (eg, dementia care collaboratives and Alzheimer disease research centers). The participants will complete electronic screening and consent procedures. Consenting individuals will then participate in a 30- to 60-minute qualitative virtual focus group, held either via telephone or Zoom, using an interview guide designed to assess provider experiences with postdiagnosis clinical care and to gather feedback on the proposed RT-ADRD protocol. The participants will also have the opportunity to participate in an optional exit interview and web-based survey to gather additional feedback. Qualitative data will be analyzed using a hybrid inductive-deductive approach and the framework method for thematic synthesis. We will conduct approximately 6 focus groups with 4-6 individuals in each group (maximum N=30 individuals; until saturation is reached). Data collection began in November 2022 and will continue through June 2023. We anticipate that the study will be completed by late 2023. The results from this study will inform the procedures of the first live video RT-ADRD dyadic resiliency intervention focused on the prevention of chronic emotional and relational distress in couples shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from stakeholders on ways to best deliver our early prevention-focused intervention and gain detailed feedback on study procedures prior to further testing. DERR1-10.2196/45533.

A Controlled Pilot Study of the Wish Outcome Obstacle Plan Strategy for Spouses of Persons With Early-Stage Dementia.

Behavioral interventions can reduce distress for couples coping with early-stage dementia. However, most interventions are limited in accessibility and fail to address individualized goals. This pilot study examined the dyadic effects on multiple indicators of well-being of the Wish Outcome Obstacle Plan (WOOP) intervention, which guides participants to use Mental Contrasting with Implementation Intentions to achieve attainable goals in their daily lives. This randomized controlled trial included 45 older persons with early-stage dementia (PWD) and their spousal care partners (CPs: n = 90 individuals). CPs were assigned randomly to WOOP training immediately after baseline (WOOP) or after a 3-month follow-up interview (Control; CON). Both groups received a dementia care education booklet. WOOP CPs were instructed to practice WOOP at least once a day for 2 weeks. All CPs and PWDs completed home surveys (baseline, 2 weeks, and 3 months), measuring perceived stress, depressive symptoms, quality of life, and affect. Mixed-effects models showed significant intervention × time interaction effects with large effect sizes for CPs on three of the five outcomes over 3 months. Compared with CON, WOOP CPs had decreased perceived stress (δ = 1.71) and increased quality of life (δ = 1.55) and positive affect (δ = 2.30). WOOP PWD showed decreased perceived stress (δ = 0.87) and increased quality of life (δ = 1.26), but these effects were not statistically significant. WOOP is a promising, brief intervention to improve dementia CPs' well-being that may also positively affect their partners with dementia.

The Dyadic Effects of Perceived Support on Depression in Spousal Care Partners

Relationship quality is an important factor affecting care partners’ health and wellbeing. Supportive marital relationships are associated with better physical and subjective health, whereas strain is associated with poorer health. Recent studies now indicate a dyadic effect of relationship quality on health outcomes, such that an individual’s perceptions of their relationship also affects their partner’s outcomes. Few studies have examined the dyadic effects of relationship quality on mental health among older cognitively intact caregiving couples. To address the lack of dyadic research about how perceived support from one’s spouse related to experiences of depression for individuals and their care partners, we apply cross-sectional actor partner interdependence models (APIMs) to data from the Health and Retirement Study (HRS) (N=490 dyads). APIM regression models controlled for participant demographic characteristics, relationship length, and care recipient functional ability. Findings showed that positive perceived support from a spouse had a stronger negative association with one’s own depression for care recipients than for caregivers. Similarly, greater negative perceived support from a partner was associated with higher levels of depression; whether the partner was the caregiver or care recipient did not make a difference in this model. Although there are hundreds of caregiver interventions to address caregivers’ mental health, few have demonstrated improvement in care recipient outcomes. Observation of both actor and partner effects in this study suggests there may be opportunities to improve care recipient and caregiver mental health by targeting interventions to promote high quality relationships with caregivers or both members of the care dyad.

Dyadic Experiences of Living With Cognitive Impairment Through a 3-Year Longitudinal Qualitative Study

The fastest growth of population living with cognitive impairment takes place in China. The estimated prevalence of cognitive impairment among older adults in China is between 13% and 20%. This study focused on persons with cognitive impairment (PWCI) and their spousal care partners to explore how spousal relationships impact dyadic experiences of living with cognitive impairment through a person-centered care lens. We conducted a longitudinal qualitative study of 10 dyads of PWCI and their care partners over three years with three data collection time points. Our findings suggest that the complexity of changing experience of living with cognitive impairment is interpreted in the dynamic nature of their spousal relationship and relationship with others, patterns of communication, daily activities and care during the extended period of cognitive decline. It is crucial to help them nurture the belief that there is a significant meaning in the journey of living with cognitive impairment.

The relationship between perceived support and depression in spousal care partners: a dyadic approach

Objectives Caregiving within a spousal partnership marks a novel relationship stage for couples. Caregiving introduces new stressors and affects couples’ ability to cope, and potentially alters perceptions of emotional support. Prior research on older married couples illustrates how perceived support not only affects an individual’s mental health, but also that of their partner. To date, the dyadic relationship between emotional support and mental health is largely unexamined among caregiving partners, where support expectations may differ. Method Actor partner interdependence models using linear mixed modeling were applied to data from spouses where one partner received caregiving within the 2014 and 2016 waves of the Health and Retirement Study. We examined the cross-sectional and lagged associations between perceived emotional support and strain from a spouse on actor and partner depression scores, as well as whether one was the caregiver or the care recipient moderated associations. Results More positive perceptions of support were associated with lower depression scores for oneself (b= −0.55, p < 0.001) and one’s partner (b= −0.24, p < 0.001). Actor effects—how one’s own perceptions of support associate with one’s own depressive symptomology—were stronger for care recipients than for caregivers (b= −0.83, p < 0.001 v. b= −0.26, p < 0.05). Higher perceptions of strain were also associated with higher depression scores for oneself (b = 0.57, p < 0.001) and one’s partner (b = 0.39, p < 0.001), associations that remained even in lagged models. Conclusions The observation of both actor and partner effects in this study suggests opportunities to improve care recipient outcomes through intervention with caregivers or both members of the care dyad.

Living With Cognitive Impairment in China: Exploring Dyadic Experiences Through a Person-Centered Care Lens.

China has experienced a substantial increase in the number of older adults with dementia and milder forms of cognitive impairment. Being spouses of Persons with cognitive impairment (PWCI) and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered care and maintain a valued and healthy relationship. The current study explored how elements of PCC, as operationalized by the Senses Framework, operate or fail to operate in the dyadic experiences of PWCI and their spousal care partners within the socio-cultural context of China. Our findings suggest that PWCI and their spouses experience the six senses through the person-centeredness in their daily interactions with each other. It also indicated successes and challenges to being person-centered early in the disease and identified their unmet needs as well as barriers and facilitators to improve their well-being.

The self-management balancing act of spousal care partners in the case of Parkinson’s disease

Background: Living with and caring for someone with chronic illness can lead to limitations in activity and social participation for the care partner. Past research emphasizes the importance of care partners taking care of themselves physically and emotionally so they can stay healthy to support the care recipient. There is little information regarding how the care partner takes care of their own social lives. The purpose of this study was to explore the concept of social self-management from the perspective of spousal care partners of people with Parkinson’s disease.Method: Twenty spousal care partners of people with Parkinson’s disease were interviewed three times. A grounded theory approach informed data analysis.Results: Findings that emerged from the data focused on balance in activities, support, and emotions and were summarized into three main themes: (1) Activities: Caregiving and beyond; (2) Strategies to support self and spouse; and (3) Emotional impact: Burden and compassion.Conclusion: This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships.Implications for rehabilitationThe focus of rehabilitation is often on the person diagnosed with the chronic condition.Living with and caring for someone with a chronic illness, such as Parkinson’s disease, can lead to limitations in activity and social participation for the care partner.Including care partners in the rehabilitation process is key to helping maintain their health and well-being.Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Transitions to Long-Term Care

Food and mealtimes play a central role in our lives and often hold great meaning. This study is a secondary analysis of a subset of data collected from a 6-year longitudinal qualitative study called Eating Together (ET), which sought to better understand the experiences around food and mealtimes for community dwelling persons with dementia (PWD) and their primary care partners (CP). Several PWD and, in some cases, their spousal CP, relocated to long-term care (LTC) during the conduct of the ET study. To understand how this relocation influenced the meaning of meals, a subset of those who experienced this transition were selected and analysis specific to this issue was undertaken. Seven families were included in this thematic inductive analysis. Findings revealed five themes related to the different mealtime experience in the LTC home, including systemizing the meal, adjusting to dining with others, holding on to home, evolving mealtime roles, and becoming "at home." Understanding how families adapt to commensal dining in LTC may be relevant to successful relocation. This work furthers this understanding and provides a basis for person-centered mealtime practices that promote adaptation.

Cortisol, alpha amylase, and daily stressors in spouses of persons with mild cognitive impairment.

This study examines the effects of daily primary objective stressors (behavioral problems exhibited by persons with mild cognitive impairment) and subjective stressors (unpleasant marital interactions) on the diurnal cortisol pattern and the diurnal pattern of salivary alpha-amylase (sAA) of spousal care partners. Thirty spouse care partners (age 59-85 years) participated in a 7-day diary study and submitted saliva samples on 4 consecutive study days, totaling 406 valid samples. Results from multilevel models revealed that daily objective stressors were associated with elevated cortisol levels and a flatter slope but were not associated with sAA activity. Conversely, unpleasant marital interactions were associated with flatter sAA slopes but not associated with cortisol activity. Furthermore, daily levels of sAA moderated variations in cortisol in the presence of a primary objective stressor. The utility of our research has implications for advancing scientific understanding of biosocial processes and the development of stress prevention and intervention strategies.