Catherine A. McCarthy

The buffering effect of a computer support network on caregiver strain.

ComputerLink was a computer support network for family caregivers of people with Alzheimers disease. In a 12-month experiment, 102 caregivers were randomly assigned to an experimental group that had access to ComputerLink or to a control group that did not. This investigation examined whether caregivers in the experimental group had greater reductions in four types of care-related strain by the end of the 1-year study. ComputerLink reduced certain types of strain if caregivers also had larger informal support networks, were spouses, or did not live alone with their care receivers. More frequent use of the communication function was related to significantly reduced strain for caregivers who were initially more stressed and for non-spouse caregivers. Greater use of the information function was related to significantly lower strain among caregivers who lived alone with care receivers. Overall, ComputerLink appeared to be an effective tool for reducing strain for some caregivers.

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 Alzheimers 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. 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. RESULTS Data from the assessments and goals indicated areas of need were not limited to any one issue or subset of issues, but were widely distributed across a variety of domains. Findings for action steps suggested a primary focus on getting/giving information and action-oriented tasks to access services and programs. Most action steps were assigned and completed by veterans spouses and the majority were successfully accomplished. On average, families had two contacts per month with care coordinators. Few barriers were indicated by care coordinators in implementing PDC, highlighting the acceptability and feasibility of the PDC protocol. IMPLICATIONS PDC addressed the diverse needs of individuals with dementia and their caregivers, including important non-medical care issues, such as understanding VA benefits, accessing community resources, and addressing caregiver strain. PDC proved to be a feasible model that was complementary to the existing programs of the 2 partnering organizations.

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 Alzheimers 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 Alzheimers 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 Alzheimers Disease and a proposed amendment to the Older Americans Act.

A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months

Introduction“Partners in Dementia Care” (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer’s Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia.Methods and FindingsFive matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate.ResultsOf 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = −0.09; p = 0.05), depression (B = −0.10; p = 0.03), and unmet need (B = −0.28; p = 0.02; and B = −0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = −0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = −0.96; p < 0.01) and embarrassment (B = −0.05; p = 0.02). Limitations included use of matched comparison sites rather than within-site randomization and lack of consideration for variation within the PDC group in amounts and types of assistance provided.ConclusionsPartnerships between community and health organizations have the potential to meet the dementia-related needs and improve the psychosocial functioning of persons with dementia.Trial RegistryNCT00291161

Differences in service attitudes and experiences among families using three types of support services

One goal of support services for family members of Alzheimers patients is to facilitate the use of other formal services. Few existing studies empirically test the relationship between support service use and the use of other community or residential services. This research describes the relationship between support and other service use by comparing families who used three types of support services: • Information and referral • Educational programs; and • Support groups. Data from in-person interviews with 127 family caregivers showed that families who used one of the three support services differed in the use of other services, service attitudes, past service experiences, and reasons for support service use. Results profile the characteristics of families who turn to different types of support services and illustrate the importance of past service characteristics for explaining current and future utilization. Information and referral (I & R), educational programs, and support groups are commonly provided support services for family members of Alzheimers disease victims. These three support services share the common goal of facilitating and encouraging the use of other formal services for Alzheimer patients and their family members. Despite this goal, research on support services has seldom considered whether their use is related to the use of other services.

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.

Negative Consequences of Family Caregiving for Veterans With PTSD and Dementia.

Abstract 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.