Early stage alzheimer's disease support and self-advocacy groups: empowerment within a disempowering disease process?

Historically, individuals with cognitive problems such as Alzheimer's disease (AD), and other forms of dementia, have had little say in determining the course of their own lives. Assumptions have been made by professional caregivers, family, friends, and government agencies (such as those responsible for social and health services), that people with AD, even in the early stages, are incapable of enunciating their own concerns and speaking on their own behalf But times are changing and a growing number of people with dementia are developing organizational forums that will allow their voices to be heard. This project examines the development process of one such forum - support and self-help groups. The project is set within an emancipatory framework and is undertaken in the hopes that it will contribute to the empowerment and self-determination of persons with AD. The development process of a new support and self-advocacy group for people with early stage AD, established in Prince George in September 1999, is examined utilizing a case study format. A review of the literature relating to the formation of support and self-help groups for persons with cognitive problems both in Canada and internationally is presented, along with a case description of the formative months of the Prince George group (for which the author is a co-facilitator). A critical, retrospective case analysis of the group's development process is undertaken. Major themes, including new ageism, empowerment, group theory, practice challenges and policy issues, are identified and examined. A comparative analysis of the Prince George group and other early stage support groups (as presented in the literature review) suggests that early stage supports groups can play a positive role in facilitating the empowerment of persons with Alzheimer's disease and related dementias.