Caregiver outcomes of Partners in Dementia Care Effect of a care coordination program for veterans with dementia and their family members and friends The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. Read more
Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons With Dementia The need for evidence -based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimer’s Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimer’s Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimer’s Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues. Read more
Selected Caregiver Assessment Measures A Resource Inventory for Practitioners Brief: Families provide the majority of care and support for the millions of adults in need of assistance. Likewise, the number of family caregivers is steadily increasing with many family caregivers having multiple, varied, and serious unmet financial, physical, emotional, and social needs. In order to continue providing care, family caregivers need assistance and support so that their physical and mental health needs are met rather than compromised. A systematic and well-designed assessment can help identify a caregiver's needs and strengths and, in turn, contribute to a plan of care that ensures the well-being of both the caregiver and care recipient. As health care continues to move into home setting, it is important to assess not only the knowledge, skills and capacity of the caregiver to provide care but also to address caregiver well-being and health in order to prevent more serious health problems for families in the long-term. Read more
Prevalence and predictors of depression, care-related strain, and unmet needs among caregivers of patients with dementia Read more
Negative Caregiving Effecs Among Caregivers of Veterans With Dementia Objectives: This investigation was guided by the stress process model and had two objectives: first, to describe the extent of negative caregiving effects for family caregivers of veterans with dementia, and second, to identify salient predictors of negative caregiving effects. Design: Data were obtained from baseline, structured telephone interviews with family caregivers of veterans enrolled in “Partners in Dementia Care,” a clinical trial testing a care coordination intervention. Participants: The study included 486 family caregivers of veterans with dementia who received primary care from the Department of Veterans Affairs healthcare system and lived at home. Measurement: Six negative caregiving effects were described as follows: unmet needs, four role and intrapsychic strains, and depression. Predictive factors included the following: cognitive impairment, behavior problems, personal care dependency, number of chronic conditions, and characteristics of the caregiving context. Results: Sizeable portions of caregivers experienced negative caregiving effects; most common were unmet needs, social isolation, and depression. Cognitive, behavioral, and functional symptoms of dementia and other coexisting chronic conditions explained significant variation in all negative caregiving effects. Caregiving context had little impact. Behavior problems were the most consistent predictor; personal care dependency and other chronic conditions were also important. Conclusions: Family caregivers, the foundation of long-term care for veterans with dementia who live at home, experience a variety of negative caregiving effects. Negative effects are greater when veterans exhibit behavior problems, require extensive assistance with personal care, and have a greater number of coexisting chronic conditions. Negative caregiving effects are an important target for interventions that support family caregivers and promote continued care at home. Read more
Understanding Discrepancy in Perceptions of Values Individuals With Mild to Moderate Dementia and Their Family Caregivers Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs’ beliefs for 5 values related to care (autonomy, burden, control, family, and safety). We used multilevel modeling to investigate if there are dyadic level discrepancies in beliefs and what factors are associated with such discrepancies. Results: Caregivers consistently underestimated the IWD’s values for all five values. Discrepancies were associated primarily with caregivers’ beliefs about the IWD’s involvement in decision making. Race was also associated with the discrepancies for control and safety, whereas cognitive functioning of the IWD was associated with the discrepancy for burden. Implications: Many caregivers do not have an accurate depiction of the IWD’s values, yet, caregivers will become the surrogate decision makers for IWDs as dementia progresses. These findings indicate the need for assessments of values and preferences in care and to develop programs that assess values, consider the caregiver’s beliefs about care, and improve communication within the dyad in the early stages of dementia. Read more
Partners in Dementia Care A Care Coordination Intervention for Individuals with Dementia and their Family Caregivers Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer’s Association Chapters; (b) a multidimensional assessment and treatment approach, (c) ongoing monitoring and long-term relationships with families, and (d) a computerized information system to guide service delivery and fidelity monitoring. Read more
Knowledge of Documented Dementia Diagnosis and Treatment in Veterans and Their Caregivers Design and Methods: Data illustrating the use of the intervention were displayed for 93 veterans and their caregivers after 12 months in PDC. Descriptive data were provided for each major component of the intervention protocol, including: initial assessment, goals, action steps, and on-going monitoring. Care coordinators completed a 12-item questionnaire ascertaining the acceptability and feasibility of implementing PDC. Read more
Existential Loss as a Determinant to Well-Being in the Dementia Caregiving Dyad A Conceptual Model The following describes a conceptual model for dementia caregiving. The interdisciplinary model proposes that a caregiver’s confrontation with existential loss plays a determining role in the wellbeing of the dementia care dyad. The paper describes how existential threats can affect a caregiver’s appraisal of the care situation, and thus how a caregiver copes. Still further, it is speculated that caregiver coping (as manifested primarily through avoidance or acceptance of loss) will influence behavioral interaction within the caregiving dyad, where communication and decision making between caregiver and the person with dementia is predominantly inequitable (e.g., authoritarian) or equitable (e.g., negotiated). Lastly, it is proposed that the type of dyadic behavior is an antecedent to dyadic well-being. In terms of intervention, as the model is centered on the intrapsychic threat posed by loss, particular emphasis is on both individual and social factors that negatively influence a caregiver’s ability to integrate the emotional costs related to dementia and its care. Read more
