Caregiving Alzheimer’s Disease and Related Disorders Providing support to a relative with a neurocognitive disorder such as Alzheimer's disease or a related disorder (ADRD) can be both stressful and fulfilling. As the number of ADRD persons continues to grow, so will the number of family caregivers. Yet, the development of services and interventions for family caregivers has not kept pace with the growing needs of families. Despite evidence about the efficacy of several interventions, most caregivers receive little or no help. This entry focuses on the experience of providing care to a relative with ADRD, highlighting the physical and psychological consequences and the most recent interventions designed to ameliorate caregiving stress and enhance well‐being. Read more
Religiosity and Quality of Life A Dyadic Perspective of Individuals With Dementia and Their Caregivers Objectives: Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members’ religiosity on perceptions of IWDs’ quality of life (QoL). Neither of these issues has been extensively explored. Method: One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs’ everyday-care values and preferences, including religious preferences. Using an actor_partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs’ QoL. Results: After accounting for care-related stress, one’s own religiosity is not significantly related to IWDs’ or caregivers’ perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs’ QoL, caregivers’ religiosity is positively related to IWDs’ self-reports of QoL, and IWDs’ religiosity is negatively associated with caregivers’ perceptions of IWDs’ QoL. Conclusion: These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD’s QoL. It is important that caregivers understand IWDs’ values concerning religion as it may serve as a coping mechanism for dealing with dementia. Read more
Characteristics of Depressed Caregivers of Veterans With Dementia This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention. Read more
Understanding and Enhancing the Relationship Between People With Dementia and Their Family Families provide the majority of care and support to the millions of people with dementia worldwide (see Chapter 1). Family members assist with instrumental and personal care tasks such as finances, housework, transportation, bathing, feeding, dressing, and toileting. This chapter looks at the experience of dementia for both the person and carer, how interactions, communication, and relationship quality of people with dementia and their carers are affected by changes in memory during the earliest stages of dementia, and the experience of recognizing and accepting symptoms of dementia. Interventions that can improve communication between people with dementia and their care partners and help them develop a plan of care are described. Read more
Time for living and caring A tailored intervention to make respite more effective for caregivers This article presents the rationale for and description of a promising intervention, Time for Living and Caring (TLC), designed to enhance the effectiveness of respite services for family caregivers. It is guided by the theoretical principles of the Selective Optimization with Compensation (SOC) model, which individually coaches caregivers on how to assess their personal circumstances, identify their greatest needs and preferences, and engage in goal setting and attainment strategies to make better use of their respite time. Focusing on respite activities that match caregivers’ unique needs is likely to result in improved well-being. We report on a pilot study examining TLC’s feasibility and potential benefits and how caregivers viewed their participation. While additional research is needed to test and refine the intervention, we need to find more creative ways to enhance respite services. Read more
Statewide Implementation of Reducing Disability of Alzheimer’s Disease Impact of Family Caregiver Outcomes There have been few replications of efficacious evidence-based programs for dementia caregivers offered in community settings. This study highlights the replication of the evidence-based Reducing Disability in Alzheimer's Disease program and explores the changes in outcomes for participating caregivers and whether those changes are related to level of program utilization. With data from 219 caregivers, regression results indicate that more exercise sessions are associated with a decrease in caregiver strain and more behavior management sessions are associated with a decrease in unmet needs after 3 months. Findings demonstrate how a multicomponent program can have positive benefits for family caregivers. Read more
Values and Preferences of Individuals With Dementia Perceptions of Family Caregivers Over Time Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers’ beliefs about care. However, research has yet to address how caregivers’ perceptions of IWDs’ values and preferences change over time and how change is related to caregivers’ well-being. Design and Methods: The sample includes 198 dyads of an individual with mild-to-moderate dementia and a spouse or child providing assistance. Linear growth curve modeling was applied to investigate how caregivers’ perceptions of importance of IWDs’ values and preferences in daily care change over 4 years and the factors associated with change. Results: Caregivers’ perceived importance of IWDs’ values and preferences significantly decreased over time, with significant between-person differences in level and slope. Between-person differences in level were associated with caregivers’ beliefs about care, IWDs’ self-reported importance of values and preferences at baseline, and kin relationship. Changes in caregivers’ reports of importance covaried with caregivers’ own quality of life over time. Implications: Findings suggest that caregivers increasingly de-emphasize the importance of values held by their IWDs. Although creating this emotional distance may be adaptive, caregivers may become increasingly unable to make decisions that effectively represent IWDs’ own preferences. Read more
Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia Finds From Project ANSWERS Purpose: This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad’s care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. Design & Methods: The Stress Process Model guided the study’s hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weeks post-baseline. Results: Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. Implications: ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs. Read more
