Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients

Article type: Research Article

Authors: Gustafson Jr., David H.^a | Gustafson Sr., David H.^{a; b} | Cody, Olivia J.^a | Chih, Ming-Yuan^c | Johnston, Darcie C.^{a; *} | Asthana, Sanjay^{d; e; f}

Affiliations: [a] Center for Health Enhancement Systems Studies, University of Wisconsin–Madison, Madison, WI, USA | [b] Department of Industrial and Systems Engineering, University of Wisconsin–Madison, Madison, WI, USA | [c] College of Health Sciences, University of Kentucky, Lexington, KY, USA | [d] Division of Geriatrics and Gerontology, Department of Medicine, University of Wisconsin School of Medicine and Public Health (SMPH), Madison, WI, USA | [e] Wisconsin Alzheimer’s Disease Research Center, SMPH, Madison, WI, USA | [f] Geriatric Research, Education and Clinical Center, William S. Middleton Memorial Veterans Hospital, Madison, WI, USA

Correspondence: [*] Correspondence to: Darcie C. Johnston, MLIS, Center for Health Enhancement Systems Studies, University of Wisconsin–Madison, Mechanical Engineering Building Room 4107, 1513 University Ave., Madison, WI 53706, USA. Tel.: +1 608 890 2615; E-mail: dcjohnston@wisc.edu.

Abstract: Background:Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers’ health, further straining our healthcare system. By 2050, the incidence of Alzheimer’s disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system. Objective:This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia–Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts. Method:Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence. Results:Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features. Conclusion:This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

Keywords: Alzheimer’s disease, computer-assisted decision making, dementia, family caregivers, health information technology, psychological stress, social support, technological innovations, technology, telemedicine

DOI: 10.3233/JAD-190052

Journal: Journal of Alzheimer's Disease, vol. 70, no. 2, pp. 541-552, 2019