Quality of Life for Dementia Caregiving Dyads Effects of Incongruent Perceptions of Everyday Care and Values Purpose of the Study: This dyadic study investigated incongruence in care recipients’ (CRs’) and caregivers’ (CGs’) perceptions of (a) CRs’ involvement in decision making and (b) how much CRs value social relations as predictors of subjective quality of life (QOL) of CRs with mild-to-moderate dementia and their primary family CGs. Design and Methods: A secondary analysis of cross-sectional, dyadic data from in-person interviews with 205 CRs with mild-to-moderate dementia and their primary family CGs Incongruence was operationalized in two ways: absolute difference and direction of difference. Paired t tests and multilevel modeling were used to analyze differences. Results: CGs reported CRs were significantly less involved in decision making and valued social relations significantly less than CRs. Greater incongruence on CRs’ values significantly predicted lower QOL of CG and CR. When CGs reported that CRs valued social relationships less than the CR himself/herself reported, CGs’ and CRs’ QOL was significantly lower compared with QOL for dyads where there was no incongruence on CRs’ values. Incongruent perceptions of CRs’ involvement in decisions were not a significant predictor of QOL. Implications: This study provides evidence for the importance of assessing both CRs’ and CGs’ QOL, as well as incongruence in their perceptions in domains that may affect both of their QOL. Read more
Empirical Instruments for Assessment of Care Partners in Response to Bennett, P.N., Wang, W., Moore, M., & Nagle, C. Read more
Does an Intervention Designed to Improve Self-Management, Social Support and Awareness of Palliative-Care Address Needs of Persons With Heart Failure, Aims and Objectives: To conduct a formative evaluation of the iPad-Enhanced Shared Care Intervention for Partners (iSCIP) among persons with heart failure (HF), family caregivers and clinicians. Together, persons with HF and family caregivers are referred to as partners. Background: There is growing awareness of the caregiver’s contributions to HF self-management, social support and reciprocal benefits of interventions that involve both partners. The iSCIP engages both partners in a six-session psychosocial intervention to address three preventable causes of poor outcomes in a HF population: poor self-management skills, inadequate social support and underutilization of palliative care. An iPad app is used to organize the intervention. The goals of the iSCIP are to engage partners in HF self-management, communication about the HF patient’s care values and preferences, and future planning. Design: A qualitative focus group design was used. Methods: Seven clinicians and eight partners participated in focus groups to explore their experiences, needs and reaction to the iSCIP content and technologies employed. Open-ended questions and closed-ended surveys were used to collect data. Deductive content analysis was used to analyze the qualitative data. NVivo software was used for qualitative data analysis. Bayesian statistical models were used to analyze numeric data. Results: The iSCIP met partners’ and clinicians’ needs to improve self-management, communicate about care values and preferences and plan for the future. Quantitative analysis of numeric data supported our qualitative findings, in that both groups rated the intervention components useful to very useful. Implications for practice: These findings add to the growing evidence of the feasibility and acceptability of programs that address care values and preferences, and care planning. The iSCIP can be used as a guide for developing interventions and software applications, which involve both partners in care and palliative-care discussions. Read more
Development and Implementation of Online Training Modules on Abuse, Neglect, and Exploitation Online training for care managers to identify, report, and prevent abuse, neglect, and exploitation was developed for a demonstration involving the dually eligible Medicare and Medicaid population. It was composed of three modules covering background, screening, and reporting abuse. Of 453 enrollees, 273 completed at least one module and 212 completed all three. Pre- and post-training surveys for each module were used to examine changes in the proportion of correct answers for each question, using the related-samples Cochran’s Q statistic. Improvements in knowledge from pre- to post-training were evident in modules covering background on abuse and reporting abuse, but not in the module about communication principles and screening for abuse. Its content may have already been familiar to the trainees, who were primarily social workers and nurses. Lessons learned are being used to adapt the training for a wider audience to increase public awareness of abuse. Read more
Program Components and Outcomes of Individuals With Dementia Results From the Replication of an Evidence-Based Program This study examines whether the delivery of three components, (a) exercise training, (b) behavior management skill building, and (c) dementia-related education, in an evidence-based program are differentially associated with changes in outcomes for individuals with dementia (IWDs) after 3 months. Data come from 508 IWDs participating in the community replication of the evidence-based “Reducing Disability in Alzheimer’s Disease” program. Regression results indicate that after 3 months, more exercise sessions are associated with improvements in physical functioning, mobility, minutes exercising, and symptoms of depression; more dementia education sessions are related to fewer restricted activity days; and more behavior management sessions are related to more symptoms of depression. As resource-strapped agencies look to best serve participants, further analysis and consideration is needed to determine the ideal balance of program efficacy, feasibility, and resources, as well as program benefits for IWDs and caregivers. Read more
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
