Current data suggest that providing education, social support, and professional consultation to families involved in the care of a relative with an aging-related memory disorder (ARMD) improves caregiver psychological status, and sometimes slows the patient functional decline. Telemedicine has become an area of great interest in VA, as a way to meet the needs of a rural population and other service users who have difficulty coming to VA facilities. This project was designed to test the use of telemedicine-particularly, an online family support and education intervention-to meet the needs of caregivers of persons with ARMD.
Building on our prior work in schizophrenia, we evaluated an Internet-based family intervention for ARMD that caregivers accessed from their homes. We proposed that in addition to improving patient outcomes through instruction on effective behavioral management, participation in an Internet program would also reduce caregiver depression, reactivity, and burden. Our overriding objective was to develop an effective online education and support program for caregivers of patients with ARMD that could be manualized, replicated, and disseminated within both the VA health care system and the community, to enhance the efficiency and effectiveness of psychosocial treatment in ARMD.
This study was conducted at the VA GLAHS at West LA. We recruited at VA medical facilities, CBOCs, and community agencies throughout Central and Southern California. Patient entry inclusion criteria included: 1) probable diagnosis of ARMD as reflected in a gradual cognitive decline and a corresponding Mini mental state exam score at 24 or below; 2 ) has a current medical team; 3) is ambulatory and living in the community (not in a nursing home or residential facility; 4) key relative has primary responsibility for assisting patient; 5) key relative has home Internet access; and 6) both patient and key relative provide informed consent. Entry exclusion criteria included: 1) caregiver has acute illness which precludes ongoing participation; 2) either key relative or patient plan to leave area in the next year; 3) participant has a terminal or severe illness or disability that would preclude assessment, (e.g. limited speech after a cerebral vascular accident).
Assessments were conducted at baseline, 6 months, and 12 months by a rater blind to treatment condition. The primary assessment evaluated patient functioning and mental status, and caregiver depression, grief, burden and reactivity levels
Only caregivers received the study interventions. Caregivers were randomized to 6 months of the Internet intervention or 6 months of monthly supportive phone calls. All treatment was embedded in customary care. The internet intervention consisted of a) Written Psychoeducational Materials; b) Videotaped Expert Lectures; c) Chat Room--a secure chat room on a private server accessible only to members of our project which permitted synchronous communication in weekly one hour chats involving a small closed cohort of 5-7 participants and 1-2 mental health program staff; d) Discussion Board; and e) Resources. Caregivers assigned to the telephone support condition were scheduled to receive individual biweekly supportive calls for the first two months of the project; these were reduced to monthly frequency in months 3-6. Calls were typically about 25 minutes in length and were supportive in nature, but did not provide education or skills training.
We enrolled 53 care giver and care recipient pairs. The caregivers were predominately female (81%) and partners/spouses (60%), and the care recipients were predominately male (75%). The average age of caregivers was 67.4 (11.6) years, and the range was 42-87; the average age of the care recipients was 81.1 (7.4) years, and the range was 52-95. Participants were primarily Caucasian (76% of both caregivers and patents), with 20% African-American patients, 17% African American caregivers, and the rest Asian or Hispanic. Compared to data from other published samples, at baseline our caregivers tended to be more burdened but less depressed, and our care recipients had average mini-mental status exams suggesting mild to moderate levels of cognitive impairment.
Our primary analytic plan involved testing our hypotheses using general linear mixed model repeated measures analysis of covariance (as implemented in SAS MIXED), with treatment group as the between-groups variable, time as the repeated measures factor, and baseline level of the dependent variables as a covariate. The general linear mixed model permits analysis of repeated measures with missing data, and provides for flexible specification of the covariance structure. Within-group t-tests were planned to evaluate significance of change within each group at each assessment.
Final results are still being analyzed. Twenty-two (78.6%) of the 28 caregivers assigned to the internet condition came on to the chat room at least once. Caregivers assigned to the Internet condition who came on to the chat at least once attended an average of 9.16 (4.9) weekly sessions over the 24 week trial(mode=8; median=8). Impediments to more regular attendance included scheduling conflicts, caregiver and patient illness, and technical difficulties (caregiver computer problems, internet down, etc). Caregivers assigned to the phone condition participated in an average of 5.4 (1.8) of 9 planned calls (mode=5; median=5). Every caregiver assigned to the condition participated in at least one call.
Caregiving an aging population continues to be a major public health issue. The VA has been eager to embrace more automated and care at a distance technologies to overcome utilization barriers. This project indicates that it is feasible to use the Internet to support caregivers of aging Veterans. However, the study also suggests that less complicated technologies, such as consultation and education on the telephone, may be particularly appealing to older, busy caregivers.
- Hayden LJ, Glynn SM, Hahn TJ, Randall F, Randolph E. The use of Internet technology for psychoeducation and support with dementia caregivers. Psychological Services. 2012 May 1; 9(2):215-8.