Labor Force Concerns

Alzheimer Caregiver Internet Support System (ACISS) Study

Evaluation Subcontractor: Wellesley College Center for Research on Women

Project Team

Principal Investigator and Project Director: Laila Vehvilainen, MIM, MPH, HEALTHvision
Founder/Consultant/Co-Investigator: Paul M. Gertman, M.D., HEALTHvision
Co-investigators: Nancy Emerson Lombardo, PhD, Wellesley College Center for Research on Women; Hope Watt, LICSW, Geriatric Care Center at Beverly Hospital, Paul Raia, PhD, Director of Family Education and Services, Alzheimer’s Association, Massachusetts Chapter.

Abstract

HEALTHvision, in collaboration with the Alzheimer’s Association, the Geriatric Care Center at Beverly Hospital and researchers at Wellesley College, is developing an interactive, video-enhanced web page for ADRD caregivers and patients. The objective of this research project, funded by the National Institute on Aging, is to implement and field test two different versions of an Internet-based system targeted at medical, social and psychological needs of Alzheimer’s Disease and Related Dementia caregivers and patients.

As the Evaluator Subcontractor, Nancy Emerson Lombardo of the Wellesley Centers for Women at Wellesley College is participating in the following aspects of the project:

• Helped develop content for the intervention.
• Researched and established forms and measures for evaluating the intervention.
• Responsible for overseeing data analysis.
• Trained research interviewers.
• Will assist with report writing.

A field trial with 20 control and 40 experimental group families is being conducted to compare two different versions of Alzheimer Caregiver Internet Support System (ACISS), a standard and advanced version. Control group families receive the standard version which contains functionality that is currently available on the Internet for caregivers (static text materials, messaging, bulletin boards). Experimental group families receive an enhanced HEALTHvision system of education, skills training, behavior management tools, videoconferencing support linkages to the Alzheimer’s Association counselors, other caregivers, and case managers managing the health of both caregiver and patient. A unique feature of the support system is its emphasis on the health of the caregiver. The nurse and social work case managers at Beverly Hospital are in Videophone and e-mail contact with caregivers and may “prescribe” periodic completion of health assessment questionnaires or on-line submission of specific health parameters such as blood pressure or blood sugar levels. Hardware, connectivity charges and in-home training will be covered by the grant for all participants.

A formal in-depth analysis of the effectiveness, benefits and user satisfaction of technological support intervention is being conducted by Wellesley College Center for Research under the leadership of Dr. Nancy Emerson Lombardo. Data collection is performed at baseline assessments, midpoint and post-intervention with both patients and caregivers. We will measure a wide range of physical, psychological and social health parameters for all participants, using a set of well-established measurement tools. In addition, caregivers will be asked to complete 7 monthly short on-line questionnaires, and quarterly satisfaction surveys. Usage of the site and each of its particular features will also be obtained to determine if frequency and duration of usage impacts outcome measures over time.

Hypothesis

We hypothesize that this interactive website technology will allow Alzheimer’s Disease and Related Dementia (ADRD) family caregivers to receive support group services, counseling, education, skills training and other services on the Internet, which in our belief, will enhance the psycho-social well-being of the caregiver. It may also help improve or prevent the deterioration of the physical health of the ADRD caregivers by allowing them to receive adjunct medical care support they need on a remote basis. Supporting the health of the ADRD caregiver will, on average, help maintain the ADRD patient in the home for a longer period of time with concomitant psychological and possible financial benefits to the caregiver. Further, the technology can have some of the same benefits for the ADRD patient who is likely to have a variety of chronic ailments and can receive remote case management from a geriatric nurse.

Summary

According to the Alzheimer’s Association, 4 million persons currently are afflicted with Alzheimer’s disease, with an estimated 14 million projected to develop the disease by the year 2050. Almost seventy percent of ADRD patients are cared for by family caregivers, burdening them with enormous physical, emotional and financial demands. Yet family caregivers are reluctant to use services which they need and for which they are eligible.

It is hard to reach out and support ADRD caregivers, with their extensive range of medical, social and psychological needs. Also, barriers are created by caregivers’ situational inability to go outside the home and lack of financial resources to bring resources to the home at an affordable price. Overcoming these barriers through innovative uses of new technology such as with the HEALTHvision intervention is an important area for development. Computer technology interventions such as on-line chat groups, electronic bulletin boards or e-mail services are currently being used to enhance AD caregiver’s coping resources and abilities, by reaching a large number of caregivers in their homes with information, access to community resources and professional and peer support at a time when they most need it. Other interventions such as support groups and counseling require face to face contacts, which may be difficult to access by the caregiver due to competing, never-ending demands of caring for a cognitively impaired elder.

The proposed intervention would potentially assist in overcoming some of these barriers by providing readily accessible and continuously available information and support. It would also allow identification of depression and other mental or physical ailments in the caregiver or patient through more thorough and frequent monitoring, as well as periodic communication with counselors at the Alzheimer’s Association and case managers at the Geriatric Care Center at the Hunt.