Health service planning with individuals with dementia: Towards a model of inclusion

Historically, Alzheimer organizations have identified the care partners of persons with dementia as their central clients. Now, the individual with dementia is beginning to influence the direction of dementia care. A new relationship with individuals with dementia offers an opportunity for innovative direction in planning for health services and supports.; This multi-phased, multi-method research study was designed to address organizational issues related to effective inclusion of persons with dementia in planning and decision-making about health services and programs. Phase 1 aimed to understand the present state of inclusion of persons with dementia in two Alzheimer organizations and to explore considerations and strategies for enhanced inclusion. Semi-structured, key informant interviews with staff and volunteers from two local Alzheimer organizations in rural southern Ontario were conducted. A review of key organizational documents supported interview data. Individuals with dementia, who were in the relatively early stage of the disease process, were also interviewed and international experts in the field of dementia care were also consulted during Phase 1. To explore key factors influencing the ability of Alzheimer organizations to be more inclusive of people with Alzheimer's disease, Phase 2 involved interviews with policy representatives and a review of policy documents. Phase 3 aimed to explore lessons learned from the mental health and disability fields that can be applied to the field of dementia care regarding consumer inclusion in health service planning and decision making. This phase involved a literature review and key informant interviews with individuals representing the disability and the mental health sector.; Several conclusions can be drawn from this study. Much of the dementia care literature remains focused on individuals. Increased attention to considerations relevant to organizational level planning is needed. With respect to organizational considerations, the study found that factors facilitating inclusion are an increasing awareness and understanding of Alzheimer disease helps planners know what people with dementia want, in terms of their service needs and interests. Policy-level support for inclusion also emerged as an important factor facilitating organizational inclusion initiatives.; The study found that organizational initiatives with respect to inclusion are constrained in several significant ways. People with dementia interviewed noted that their efforts to advocate for their own inclusion have been met with varying degrees of resistance ad negativity. (Abstract shortened by UMI.)...