Virtual support groups for family caregivers of persons with dementia

Abstract

Virtual Support Groups for Family Caregivers of Persons with Dementia Elsa Marziali, PhD, Professor and Schipper Chair, Gerontological Social Work Research, University of Toronto and Baycrest Centre for Geriatric Care,Toronto, ON. TECHNOLOGY IN MEDICINE Introduction Family caregivers, largely women, provide the health and social care for dependent family members who have long-term chronic illnesses. Family caregiving can span many years depending on the stage of illness progression and the family’s resources for managing the needs of the care recipient. Caregiver stress and negative health outcomes are common. Intervention programs for family caregivers typically focus on a) support and/or educational groups; b) individual psychotherapy; c) interventions focused on the care recipient such as respite care; or d) combinations of two or more of these approaches. Most models of intervention produce small-tomoderate improvements in caregiver stress, depressive mood, subjective wellbeing, and coping ability.1–3 Intervention programs are delivered face-to-face in either group or individual formats and are either clinic based or provided in the home of the caregiver or care recipient. Providing similar services using technology such as the Internet presents significant challenges. E-Health Programs for Family Caregivers Technology has been used in the past to enhance intervention strategies with family caregivers of persons with dementia. ComputerLink is an Internet-based support network including a public bulletin board, private e-mail, and a text-based question-and-answer forum facilitated by nurses.4,5 The participants benefit in the short term but participation lags in the long term. REACH (Resources for Enhancing Alzheimer ’s Caregiver Health),6 a comprehensive multisite research program, evaluated the benefits of interventions designed to enhance family caregiving for Alzheimer’s disease and related dementias. In addition to faceto-face support services, two of six participating sites used digital telephone systems to enhance the delivery of information and consultation to caregivers. The Internet was not used for service delivery in any of the REACH programs. Overall, the intervention programs showed benefits to caregivers in terms of reduced stress and higher skill acquisition. Virtual Support Groups Our intervention program for dementia caregivers was developed through a series of pilot studies and subsequently evaluated in a feasibility study implemented in two remote areas: Timmins, Ontario and Lethbridge, Alberta. For the pilot studies, three groups of six spousal caregivers agreed to participate with informed signed consent. The groups were facilitated by two experienced social workers, initially in face-toface format and subsequently via Internet-based video conferencing. The overall aim of the intervention was to decrease the amount of stress experienced by the caregivers as well as enhance their knowledge and skills in managing the care of the dependent relative. The professional facilitators provided the intervention online for 10 sessions, and continual feedback was solicited from the participants regarding both the technical and clinical aspects of the program. The pilot studies yielded several modules. The first was an easy-to-use, An internet-based psychotherapeutic support group for family caregivers of persons with dementia was developed in a series of pilot studies and evaluated in a feasibility study with 34 participants. A user-friendly website was developed that included video conferencing in two formats: group and one-on-one. Following 10 professionally facilitated sessions, each group evolved into a web-based selfhelp support group. Six-month follow-up interviews showed overall positive participant responses with regard to learning to use computers, negotiating the website, providing mutual guidance and support, and improving management of caregiver