Online Caregiver Psychoeducation and Support for Alzheimer's

Alzheimer's disease (AD) is a progressive brain disease resulting in cognitive and
functional decline. While some pharmacological agents and behavioral programs are now
available to slow the rate of decline, there is no cure. Caregivers, who typically are the
female spouses or daughters of afflicted individuals, must confront both the deterioration
of a loved one, and that person's need for increasingly demanding care. Caregivers tend to
experience high levels of depression, anxiety, and burden. Data suggest that providing
education, social support, and ongoing professional consultation to families involved in the
care of a relative with AD results in improvement in caregiver psychological status, and
sometimes even slows the functional decline of the patient.

Recent technological advancements in video conferencing, online communication, and streaming
audio/video presentations, which are increasingly easy to use and gaining widespread
acceptance among mental health professionals as well as the public, have given rise to a
great deal of interest in telemedicine and telepsychiatry. This study aims to test an
Internet-based family intervention for AD that relatives can access from their homes through
the world-wide web with ease, and at no cost. In addition to improving patient outcomes
through instruction of effective behavioral management, we propose that participation in an
Internet program will also reduce caregiver depression and burden. Two hundred four
veterans with a clinical diagnosis of AD and their caregiver/relatives are being randomized
to receive one of two interventions: (1) customary care (cc) and access to an intensive,
interactive online education and support website intervention for 6 months, or (2) cc and
monthly telephone with project staff. We hypothesize that participation in the intensive
intervention will result in a reduced frequency in patient problematic behavior and a
reduction in caregiver depression, burden, and negative responses to problematic patient
behaviors. The overriding long-term objective is to develop an effective online education
and support program for caregivers of patients with AD that can be manualized, replicated,
and disseminated to other clinical and research centers, within both the VA health care
system and the community, to enhance the efficiency and effectiveness of psychosocial
treatment in AD.

The project is currently ongoing. Participant feedback about the website (collected at mid
and end of the 12 month study period) has been very positive. We are continually updating
our website to provide more behavioral management information and access to other resources.
One year attrition rates have been low (less than 20%), which is noteworthy for a project
with little face to face contact between investigators and participants. We continue to
refine our procedures for providing ongoing technical support to participants, as many are
older and have limited experience on the computer and with the internet. We are currently
developing a qualitative assessment component of the study so we can more clearly understand
issues in caregiving in our population as well as their impression of the website
intervention.