Predictors of Discrepancy Between Care Recipients With Mild-To-Moderate Dementia and Their Caregivers on Perceptions of the Care Recipients’ Quality of Life Purpose: The goal of this study was to explore predictors of discrepancy between reports of caregivers (CGs) and care recipients (CRs) with mild-to-moderate dementia about CRs’ quality of life (QOL). Design and Methods: This study was a secondary analysis of cross-sectional data drawn from a study of 200 care dyads of CRs with mild-to-moderate dementia and their primary family CGs. Paired t test, ordinary least squares multiple regression, and binary logistic regression were used for the analyses. Results: Caregivers rated CRs’ QOL significantly lower (worse) than CRs did. Ordinary least square regression results showed that greater incongruence in perceptions of CRs’ decision-making involvement (DMI) and higher level of CR impairment in activities of daily living were significantly related to higher absolute discrepancy between CG and CR about CRs’ QOL. In the logistic models, when the dyad had more DMI incongruence, or CG reported higher relationship strain, the CG was more likely to report a lower CR QOL than CR reported. Implications: Practitioners should consider incorporating CRs’ perspective when planning care instead of solely depending on CGs’ perspective. Also, practitioners should pay attention to any gap between perceptions of CGs and CRs, particularly with regard to CRs’ QOL. Read more
Negative Consequences of Family Caregiving for Veterans with PTSD and Dementia Recent research shows veterans with posttraumatic stress disorder (PTSD) are twice as likely as other veterans to develop dementia. However, no studies to date have examined the impact of co-existing PTSD and dementia on family caregivers, who provide the majority of care to these veterans. Using the Stress Process Model, the current investigation explored the similarities and differences in psychosocial, health, and service use outcomes among caregivers assisting veterans with PTSD and dementia compared with caregivers assisting veterans with dementia only. Caregivers of veterans with PTSD and dementia indicated that their relative exhibited more difficult behavior symptoms and used more community services. These caregivers also reported more difficulties understanding veterans’ memory problems and more physical strain. Together, results suggested caregivers of veterans with both PTSD and dementia were at greater risk of negative caregiving consequences. Implications and suggestions for future research are discussed. Read more
Measuring Cultural Justifications for Caregiving in African American and White Caregivers Objectives: This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative. Methods: CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience. Results: Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being). Discussion: Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed. Read more
Caregiving in America Supporting Families, Strengthening the Workforce Caregiving for older adults is an increasingly important issue in the United States. However, there are inherent infrastructural problems with both paid and family caregiving. This article provides the new President and Administration with a guide to eldercare, discusses the current status of caregiving, and offers recommendations for policy and cultural shifts to accommodate current cultural and societal changes in ways that are sustainable and healthy for the care receiver, and the paid or family caregiver. Read more
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
