Maintaining self-sufficiency, functional independence and social inclusion of community dwelling people with dementia and their informal caregivers

BACKGROUND: Dementia care changes drastically due to the growing number of people with dementia. Less young people are able to take care of the elderly (WHO, 2012). In addition, there is a trend in the Netherlands to give greater responsibility for care to informal caregivers and other citizens. As people with dementia live longer at home it is important that they, and their caregivers, stay as vital as possible. Being vital means that people with dementia can function independently, are able to keep social contacts, and can participate in their neighbourhood and society. Usual dementia care is not aimed at these themes. THE AIM is the development and implementation of the integral approach, to identify factors influencing the feasibility of this approach, to assess the feasibility of outcome measurement and to get an impression of the possible perceived outcomes. The integral approach is need-driven and tailor-made and targets at enhancement of functional independence and social inclusion of people with dementia and their informal caregivers. Starting point is the wishes and needs of people with dementia and their informal caregivers. Based on these personal needs tailor-made interventions are conducted. RESEARCH QUESTION: What determinants affect the development and implementation of an integral, multi-component, need-driven, tailor-made approach aiming at maintaining self-sufficiency, functional independence and social inclusion of people with dementia and their informal caregivers? STUDY DESIGN: a multiple case study design. SETTING AND PARTICIPANTS: 25-30 cases consisting of a person with dementia, informal caregiver (both 65+) and a professional (case manager, physiotherapist or occupational therapist) are recruited in the region Capelle and Krimpen aan den IJssel in the Netherlands. INTERVENTION: The integral approach consists of five steps: 1. NEEDS ASSESSMENT, 2. DISCUSSING the needs assessment and goal setting with the person with dementia and the informal caregiver, 3. CASE conference with professionals, researchers, students, educators and experience experts to match the needs with interventions and to advise about tailoring the interventions; and discussing this advice with the couple, 4. EXECUTING, tailoring and monitoring the interventions (Functional Task Exercise, Community Occupational Therapy in Dementia, ICT solutions, consolidation and activation of the social network, advising the person with dementia and caregiver on the home environment and neighbourhood adaptation). 5. EVALUATION. METHOD: In this study qualitative data are collected during the process of implementation of the integral approach from the people with dementia, their informal caregivers, and from the professionals involved: Needs assessment reports including life stories of each couple, audio recordings of the case conferences, written reports of tailored intervention sessions by professionals, focus groups with professionals who are involved in the intervention. Individual interviews with the people with dementia and their caregivers about their motivation to participate, their experiences and perspectives concerning the intervention. A quick expert survey of the dwellings and the technique of shadowing for outdoor activities in the neighbourhood of the couple. In order to assess the feasibility of outcome measurement and to get an impression of the perceived outcomes, at several moments in the process of implementation of the integral approach quantitative data are collected concerning a variety of outcome measures. A business case (costs and benefits)is executed. COLLABORATION: Professionals from local government, welfare and care and people with dementia and their informal caregivers, researchers, educators and students work together in a workplace learning facility situated in the neighbourhood. This is an openly situated sharing place. The close collaboration between research and pracice increases the chance of successful implementation of the approach in other regions. After the project, the participating organisations continue the implementation process of the integral approach into practice. Involvement of target group representatives allows a greater sensitivity to the needs and preferences of people with dementia and their caregivers. Target group representatives participate in a variety of ways, both as member of the project group and in a panel that is consulted on crucial moments during the project. Students at the School of Healthcare of Rotterdam University of Applied Sciences participate. The practice deliverables can be directly integrated in the curricula of healthcare studies. BENEFITS: an integral approach for maintaining self-sufficiency, functional independence and social inclusion of people with dementia and their caregivers with tools for practice and education and insight in factors influencing the feasibility of the implementation of the integral approach.