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.
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.
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.
On average, caregivers were about 65 years old with care recipients about 12 years older. Most caregivers were spouses (70.4%). As expected, 83.7% of caregivers were female, and 87.6% of care recipients were male. Both White/Caucasian (71%) and Black/African American caregivers (29%) participated. There were 26 veteran caregivers (17.0%) who were VAMC patients. Nearly all the intervention caregivers reported that the intervention enhanced their ability to care for their family member (98%). On average, from baseline, intervention caregivers reported 0.46 fewer hours of caregiving time per day compared to usual care caregivers who reported 1.3 hours more, a significant group by time interaction over one year (p = .019)..
As the average VA patient age increases, the number of veterans with dementia increases. Because most caregiving takes place in the home, anything that prevents dementia-related disorders from reaching a crisis point requiring hospitalization of the patient or caregiver (for example, helping the caregiver to manage a troublesome behavior or basic activities of daily living more efficiently or cope with stress) will benefit both caregivers and the VA. Development and evaluation of low technology, low staffing, cost-effective interventions to aid family caregivers will help VA and other policy makers to meet the increasing needs of in-home dementia caregivers.
- Martindale-Adams J, Nichols LO, Burns R, Graney MJ, Zuber J. A Trial of Dementia Caregiver Telephone Support. The Canadian Journal of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmieres. 2013 Dec 1; 45(4):30-48.
- Nichols LO, Martindale-Adams JL, Burns R, Graney MJ, Zuber JK, Kennedy SE. Potential explanations for control group benefit. Clinical trials (London, England). 2012 Oct 1; 9(5):588-95.