Exploration of the Older Adult Informal Caregiver Self-Care Promoting Well-Being

abstract: ABSTRACT This qualitative descriptive study described caregiver recognition of personal and social contextual resources guiding purposeful participation in self-care and well-being. This research builds on health empowerment theory, which conceptualizes health empowerment as an inherent, relational and ongoing process, expressive of health patterning of well-being (Shearer, 2009). By 2060, Americans 65 years and older will number nearly 98 million, more than double that in 2013. The number of older adults aged 85 and older will double from 6 million in 2003, to 14.6 million by 2040 (Health & Human Services, 2014). Sixty-five million adults serve as informal caregivers, many themselves suffering from chronic conditions (National Alliance for Caregiving & AARP, 2009). Current research has examined the burden of caregiving, but little is known about caregiver strengths and resources that foster personal self-care and well-being. Twenty-one older adult informal caregivers participated in focus groups or individual interviews. Length of time as caregivers ranged from one year to more than ten years; 24% of the participants were men. Seventy-six percent of the participants reported having one or more chronic condition. Themes generated from qualitative content analysis provided a basis for validating and extending the health empowerment theory among older adult informal caregivers. Across participants, empowerment reflected recognition of strengths and resources, as well as growth consistent with valued goals facilitating new health patterns and well-being. The health empowerment theory perspective provided a relevant basis for theory-based intervention focused on promoting strengths, abilities and potential among older adults, limiting vulnerability to diminished health and well-being.Dissertation/ThesisDoctoral Dissertation Nursing and Healthcare Innovation 201

The Role of Social Location in Coping with Caregiving

A salient concern stemming from population aging is the expected rise in demand for informal family caregivers for diseases impacting the elderly, including dementia (MMMI 2010; NIA and WHO 2011). Studies of caregiver well-being often problematize the sociodemographic caregivers (e.g. gender, marital status) while caregiver intervention studies typically focus on the program itself (Gallagher-Thompson et al., 2008; Rabinowitz et al., 2006; Shulz et al., 2003). In this dissertation I unite these two bodies of caregiver research and examine how the sociodemographic characteristics of participants in a caregiver intervention program relate to the program’s effectiveness. I use secondary data from the Stress Management Project Dataset (Spiegel, 2001) and evaluate how participants’ social location (specifically, race and education) impacts the effectiveness of each program on caregivers’ depressive symptoms and stress. This study employed a sociological perspective to examine how social location (specifically race and education) impacts the benefits of a dementia caregiver intervention program. Using secondary data, I performed OLS regression analyses and found support for the initial hypothesis that suggested that the Coping with Caregiving (CWC) intervention would be more effective than the Telephone Support Control (TSC). There was no support for the remaining hypotheses that proposed that White caregivers with more education would benefit more from the program, or that the effects of race and education on caregiver outcomes would be contingent upon each other

CommunityRx, a social care assistance intervention for family and friend caregivers delivered at the point of care: Two concurrent blinded randomized controlled trials

Background: CommunityRx is an evidence-based social care intervention delivered to family and friend caregivers (“caregivers”) at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago’s South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers. Methods and findings: CommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment. Discussion: Our asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research. Trial registration: ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).</p

Understanding Positive Aspects of the Caregiver Experience in Dementia: A Meta-Integration and Qualitative Investigation

This dissertation includes two studies designed to explore the positive aspects of providing care to someone living with dementia. The work reported here provides a knowledge base that benefits future research by allowing for a greater degree of consistency in labels, measures, and definitions of positive aspects, as well as by informing theoretical models of caregiving. The label ‘positive aspects’ is used in this work to refer to experiences or outcomes that are perceived by a caregiver to be positive in nature, and related to fulfilling the caregiver role. Study one is a meta-integration of the quantitative and qualitative research on the positive aspects of caregiving for someone living with dementia. Eight databases were systematically searched, and 80 studies were included in the study. Quantitative dataset synthesis revealed common relationships between measures of positive aspects and other caregiving factors. Qualitative dataset synthesis revealed factors that underlie, facilitate, and hinder positive aspects. Synthesizing the qualitative and quantitative datasets I elaborated on relationships between caregiving factors and provided a holistic account of the phenomenon, including conditions for the experience of positive aspects of caregiving. Study two is a qualitative investigation into caregivers’ perceptions and experiences of positive aspects of caring for someone living with dementia. The findings from study two lend support to study one findings of the factors that underlie, facilitate, and hinder the experience of positive aspects of caregiving. Study two findings provide insight into the relationship between positive aspects of caregiving and caregiver age, caregiver/care recipient relationship, and years spent caregiving. The findings of this dissertation may be used to inform models of caregiving, future research, and caregiver intervention programs. Through this work I elaborate on how caregiver factors, caregiving environment factors, and the complex interplay between the two impact caregivers’ experience of caregiving. I suggest the use of neutral models of caregiving that emphasize caregiver appraisal of the caregiving experience, as opposed to models of negative or models of positive caregiving outcomes. These findings highlight facilitating positive appraisal of the caregiving role and caregiving demands as a point of intervention for caregivers

Health Information Seeking as a Coping Strategy to Reduce the Stress of Informal Caregivers of Individuals with Alzheimer’s Disease and Other Forms of Dementia

This study explored the relationship between information seeking and the perceived stress levels of informal Alzheimer’s and dementia caregivers. An additional component was added to determine whether health literacy and emotional state moderated the relationship. The study involved conducting qualitative interviews followed by collecting survey data to answer the following research questions: 1) What motivating factors lead informal AD caregivers to seek out information? How do their information needs change? Why do informal caregivers choose to utilize certain resources more than others? Is there a correlation between information seeking and resulting stress levels? Does health literacy moderate the association between information seeking and stress? The study also investigated the following hypothesis: Informal caregivers with low health literacy and low self-efficacy will have increased stress levels and those who have high health literacy and high self-efficacy will have decreased stress levels. Qualitative findings revealed that caregivers tend to rely on mediated resources that they find credible, and interpersonal resources such as people with similar experiences to their own. Many participants were satisfied with information available, but others felt that their interactions with healthcare professionals created more stress and emotional anguish than anticipated. Quantitative results supported qualitative results in showing that participant information needs change based on care recipient needs. Results also showed that overall, there was no correlation between information seeking and perceived stress levels; however, there was a significant difference between low-level information seekers and mid-level information seekers. Additionally, health literacy does not moderate the relationship between information seeking and perceived stress, but emotional state and self-efficacy were significant predictors of perceived stress. This study offers an initial step in finding ways that mediated communication can meet the healthcare needs of those who attempt to fill their information needs. The study also reiterated the idea that in many cases, it is necessary to combine the efforts of mediated and interpersonal communication to have the greatest effect

The state of psychological services for people with physical and cognitive disabilities: an integrative systematic review

The present study investigated the state of psychotherapy for people with physical and cognitive disabilities in a systematic review. Specifically, this study analyzed qualitative and quantitative studies which examined therapists’ abilities to conceptualize disability as a dimension of cultural competence, the models and conceptualizations of disability and psychotherapy being used with people with disabilities (PWD) in psychotherapy, and the experiences of PWD in psychotherapy. This study analyzed 18 empirical studies and integrated both qualitative and quantitative methods. Source eligibility criteria for this systematic review was the same for both qualitative and quantitative studies. Eligibility criteria included being: peer-reviewed journal articles, international and domestic locations, in the English Language, and published after 2010. This review excluded case studies. The researchers appraised the quality of each study using the Critical Appraisal Form, and recorded the research variables from each study using the Data Collection and Extraction Form. Data was then entered into customized Excel spreadsheets in the form of Evidence Tables. A synthesis of important findings was conducted to describe the similar themes found in the data. The findings of this research point to the need for further research which includes PWD in psychotherapy, such as improving therapists’ cultural competence, more variety of psychotherapy orientations and models for PWD, and increased narratives of PWD in psychotherapy

Conversation Goals, Communication Satisfaction, and Relational Dynamics While Navigating Alzheimer’s Disease: A Pre- and Post-Diagnosis Dyadic Examination of Family Communication

Currently there are more than 16 million unpaid Alzheimer’s disease and dementia caregivers in the United States. These caregivers are often family members of the person living with dementia, and as they navigate the process of giving care to the patient, they must also maintain relationships with each other. Families enter the dementia experience with a history of their relational experiences, and their relational experiences potentially change as they navigate family experiences after the dementia diagnosis. Much existing scholarship examining family communication in the context of progressive Alzheimer’s disease and other related dementias has focused on the perspectives of one individual within a family, single communication encounters, and has operationalized communication in terms of frequency. This dissertation applied the multiple goals theory of interpersonal relationships (Caughlin, 2010) to address some of the gaps in extant scholarship by focusing on family dyads, collective past communication experiences, and measured the quality of family communication. Seven research questions were presented, which inquired about the associations between pre-diagnosis relational dynamics, post-diagnosis communication satisfaction, post-diagnosis interaction goals, and post-diagnosis relational dynamics. Perspectives of adult family members of U.S. dementia patients were elicited through self-guided online questionnaires. Participants were recruited in dyadic pairs, and the total sample included 53 family dyads (n = 106 individuals). Data were analyzed using path analyses in actor-partner interdependence models to examine the relationships between variables. Statistically significant actor effects were observed between pre-diagnosis relational dynamics and post-diagnosis communication satisfaction, post-diagnosis interaction goals and communication satisfaction, and post-diagnosis communication satisfaction and relational dynamics. Statistically significant actor and partner effects were observed between pre-diagnosis relational dynamics and post-diagnosis interaction goals, pre- and post-diagnosis relational dynamics, and post-diagnosis interaction goals and relational dynamics. The results of this dissertation provide compelling evidence that actual communication experiences are important to how family members evaluate their ability to attend to interaction goals in the context of dementia, and those perceptions in turn affect family relational dynamics after the dementia diagnosis. Findings of this research demonstrate that pre-diagnosis relational dynamics aggregate and influence post-diagnosis perceptions and evaluations of own and other’s interaction goals and satisfaction with enacted communication. Additionally, results of this dissertation show family members’ ratings of relational closeness increased and functioning decreased from pre- to post-diagnosis. Results of this dissertation have several theoretical and practical implications. Theoretically speaking, these findings provide evidence supporting previous multiple goals research and extending this work into the family dementia context. Actual communication experiences are important to how family members evaluate their ability to attend to interaction goals in this context, and those perceptions in turn affect family relational dynamics after the patient’s dementia diagnosis. The current research also provides some initial evidence that more global perceptions of interaction goals are related to more global relational concepts. Additionally, the findings from this dissertation can be used to inform the evidence-based evaluation of dementia caregiver interventions, education programs, and online social support resources. The interwoven experience of family members navigating the experience of dementia is complex. The practical insight gained from these results can be used to assist caregivers and families with their relational needs and to mitigate the negative implications associated with caregiving. These findings can be utilized to ultimately improve health outcomes for family members of dementia patients and patients themselves

Addressing the Health Needs of an Aging America: New Opportunities for Evidence-Based Policy Solutions

This report systematically maps research findings to policy proposals intended to improve the health of the elderly. The study identified promising evidence-based policies, like those supporting prevention and care coordination, as well as areas where the research evidence is strong but policy activity is low, such as patient self-management and palliative care. Future work of the Stern Center will focus on these topics as well as long-term care financing, the health care workforce, and the role of family caregivers

NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM (NFCSP): ASSESSING CLIENTS’ CHARACTERISTICS, PROGRAM UTILIZATION AND DIFFICULTY ACCESSING SERVICES

Objective: This dissertation examined the National Family Caregiver Support Program (NFCSP), assessing NFCSP clients based on their demographic and health characteristics, caregiving-related burden and circumstances, and use of program services and support, with further stratification by care recipients’ dementia diagnosis. A further examination of program outcomes focused on which client characteristics were associated with deriving limited immediate and long-term benefits from program use. Methods: Approximately 1,651 responses from the 2016 National Survey of Older American Act Participants-Caregiver Module (NSOAAP-CM) were used to provide a profile of caregivers who used the NFCSP. Chi-square (X2) were used to assess the significance in any differences found between dementia and non-dementia caregivers, compare responses between 2016 and earlier responses (2008; n=1,623). Logistic regression was used to exam the influence of client characteristics on limited immediate and long-term benefits. Results: NFCSP clients were found to be primarily White, female, daughters, married and caring for an older adult with dementia. Dementia caregivers who used the NFCSP were found to report performing more caregiving-related tasks along with higher amounts of physical strain and emotional stress and received more intensive services such as information and assistance, respite care and education/training/counseling, whose use was found to have declined between 2008 and 2016. Overall, the program is rated very highly, however variation was found among client demographic and health characteristics and use of particular NFCSP services and supports on immediate and long-term benefits derived from program use. Conclusions: Compared to broader estimates of family caregivers of older adults, NFCSP appears to provide services for more dementia caregivers and family caregivers with higher amounts of caregiver-related physical strain, emotional stress and financial hardship. Findings indicate that dementia caregivers derived immediate benefit from program use, however the program may be limited in providing them and their care recipients with long-term benefits. Additional attention directed towards minority, stressed, strained or dementia caregivers may be necessary to assess challenges and barriers in fully benefiting from the program. Future efforts should include additional questions on caregiver assessments and on NSOAAP-CM examining specific barriers or challenges in accessing services, informing strategies needed for additional program improvement