Engagement of Veterans With Dementia in Partners in Dementia Care An Evidence-Based Care Coordination Program This study describes engagement of veterans with dementia in an evidence-based care coordination intervention called Partners in Dementia Care (PDC). PDC uses a person-centered approach that encourages participation by individuals with dementia (IWDs), despite their cognitive impairment. PDC also targets primary family or friend caregivers, who often are the main user of the program. Of the total 316 IWDs, 202 passed a mental status screening and were considered to have engagement potential. The study of actual engagement was based on data from IWDs’ PDC records, combined with data from structured research interviews. Approximately 80% of IWDs with engagement potential had a minimum level of actual engagement in PDC. A smaller subsample was more actively engaged, as indicated by assigned and/or accomplished action steps. Younger IWDs and those self-reporting more memory difficulties had higher levels of engagement. Results describe one example of the extent and limits of IWD engagement in psychosocial interventions. Read more
The SHARE Program for Dementia Implementation of An Early-Stage Dyadic Care-Planning Intervention This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia’s care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one’s desires before the onset of disease progression when the demand for making care decisions is high. Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future. Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia. Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future. Read more
Shared Decision-Making in Dementia A Review of Patient and Family Caregiver Involvement This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers. Read more
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
