Involvement of Hospitalized Persons With Dementia in Everyday Decisions A Dyadic Study Background and Objectives: To examine the involvement of persons with dementia (PWDs) in everyday decision making from the perspectives of hospitalized PWDs and their family caregivers, and to identify determinants thereof. Research Design and Methods: Using multilevel modeling, we examined cross-sectional data collected prospectively from 42 family care dyads regarding the care values of the PWD. Results: Both members of the dyad rated the PWD, on average, as being “somewhat involved”. There was a significant amount of variability around the average perceptions of PWD involvement in decision making for both PWDs (χ2 = 351.02, p < .001) and family caregivers (χ2 = 327.01, p < .001). Both PWDs and family caregivers were significantly more likely to perceive greater PWD involvement in decision making when the family caregiver reported the PWD as valuing autonomy. Additionally, PWDs were significantly more likely to report greater involvement when they had greater cognitive function. Finally, family caregivers perceived significantly greater involvement of the patient in decision making when they reported less strain in the relationship. Together, autonomy, relationship strain, cognitive function, and care-related strain accounted for 38% and 46% of the variability in PWDs’ and family caregivers’ perceptions, respectively, of the PWD’s decision-making involvement. Discussion and Implications: Although research indicates that decision-making abilities decline with advancing dementia, these results imply that working with families to support PWDs in their value of autonomy and mitigate strain in the dyad’s relationship may help prolong PWDs’ decision-making involvement. Read more
The Support, Health, Activities, Resources, and Education Program for Early Stage Dementia Results From a Randomized Controlled Trial Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care. Read more
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
