Alzheimer Disease Clinical Trial
Official title:
Testing the Effectiveness of Telephone Support for Dementia Caregivers
The primary goal of the study is documentation of effectiveness of telephone support groups to reduce caregiver burden and stress. Caregivers who participate in intervention (Telephone Support) should experience lower levels of stress, burden and health care utilization (lower use of psychotropic drugs, fewer scheduled/unscheduled medical visits, lower rates of institutionalization, more efficient use of time in managing care recipient problems) compared to those caregivers in Usual Care.
Background: Caregiving can severely limit caregivers' lives. In order to keep their family
member at home, dementia caregivers often experience physical and psychological strain,
social isolation, loss of time for self, and inability to obtain and/or afford assistance
with caregiving tasks. The amount of time spent in providing care for a family member with
dementia contributes to these problems. Dementia caregivers report spending around 18 hours
per day in caregiving tasks and 3 hours per day in supervision. The high levels of stress
involved in caring for a dementia patient and the widespread lack of training in such care
can lead to a vicious cycle of ever-increasing health care dependency, first for the patient
and secondly for informal caregivers. Telephone Support Groups have the potential to address
caregivers' stress, isolation and education about dementia and its management, leading to
sustainable informal caregiving and lower healthcare use and overall VHA expenditures for
the veteran patient with dementia.
Objectives: Study objectives are to 1) examine Telephone Support Groups' effectiveness for
caregivers, 2) determine whether Telephone Support results in decreases in VHA health care
use and costs for the veteran, and decreased VHA and/or non-VHA use and costs for the
caregiver, and 3) examine the intervention's effect on caregivers' time spent providing
care. The long-term objective is to develop and disseminate the protocol and materials for
effective Telephone Support Groups that can be used across the VHA system.
Methods: This randomized clinical trial of 154 caregivers (Black/African American,
White/Caucasian, rural, urban) compared dementia caregivers participating in Telephone
Support Groups to caregivers whose family members with dementia were receiving usual care.
Either the caregiver or the patient had to be a veteran receiving care at the VAMC Memphis.
In the treatment condition, there were 15 year-long support groups of one trained group
leader and 5 to 6 caregivers. Each support group met 14 times. The one hour calls were
semi-structured conference calls with education, coping skills and cognitive restructuring,
and support components. A Caregiver Notebook with information on each topic provided
materials for the educational sessions. Topics included knowledge of dementia, safety,
caregiver health and well being, communication, managing behavioral challenges, and
caregiver stress and coping. A workshop focusing on the same behavior management and stress
topics was offered to Usual Care caregivers at the end of their participation.
Data were collected in caregivers' homes by trained Research Associates at baseline, six and
twelve months. VHA health care use and data for the veteran were based on the Patient
Treatment File (PTF) and the Outpatient Clinic File (OPC) and costs data used the Health
Economics Resource Center (HERC) Average Cost Data Sets.
;
Allocation: Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Parallel Assignment, Masking: Open Label, Primary Purpose: Treatment
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