Being Home with Dementia: Explorations of the Meaning of Home and Approaches to Care and Support

Background : The coming years will see an increase in the number of persons with dementia, and more persons with dementia will live at home for a longer time. Over time, most home-dwelling persons with dementia will be increasingly in need of individualized, coordinated care and support. A multitude of innovative care and support measures for persons with dementia has been established, and beneficent effects are seen, although with some ambiguity. In addition, coordination and individual adaptation has proved to be challenging. These complex issues have led to a call for developing sustainable care pathways that also are able to maintain the persons’ basic rights to autonomy and participation in decision-making processes. Objectives: Primary objective: To explore the meaning of home and approaches designed to promote and coordinate care for home-dwelling persons with dementia. Secondary objectives: To explore and describe how the home, as described by persons with dementia, can be interpreted and comprehended; to explore and describe how the home may be affected by care and support measures for persons with dementia; to explore the role of a coordinator for persons with dementia and their informal caregivers, and how a coordinator may contribute to support and empower home-dwelling persons with dementia. Methods: For study one, which resulted in two articles, 12 home-dwelling persons with dementia were interviewed, individually, considering their perceptions on 1) living at home and 2) receiving care and support. In study two, 18 stakeholders in an intervention testing the use of a coordinator for dyads, consisting of persons with dementia and their informal caregivers, were interviewed to explore the role of a coordinator for persons with dementia. In this study we used a combination of focus group-, dyad- and single interviews. A hermeneutical methodology was chosen for the design, application and analysis of both studies. The care philosophy of Kari Martinsen was chosen as a theoretical framework for interpreting the findings. Results: 1) There is a reciprocal relationship between the life and the home, being held up by certain individual rhythms of life; dementia might disrupt these rhythms. 2) The individual perception of care and support might depend on minor details, often with a thin line between experiencing it as supportive or infringing. 3) As the dyads had differing needs we found that the coordinators took on three roles: being a safety net; being a pathfinder in finding adequate support; and being a source for emotional care and support for persons with dementia and their informal caregivers. Obtaining direct user participation in decision-making processes may, however, be challenging. Conclusion: The home can be seen as a construction bearing existential meaning beyond its physical function. Its components, in form of habits, things, personal relations, the surrounding environment and so on, may be intricately interrelated and interdependent upon each other. This makes the home flexible, but also fragile, and support measures that are not individually adapted may have unpredicted side effects. A dedicated coordinator, meeting the persons and their informal caregivers with openness, may support the person with dementia in being home, by exploring what matters for the individual; empower them by including them in dialogue about how to make what matters, matter; and by putting adequate care and support into effect in order to actually make it matter. We recommend an open and curious approach in each individual meeting, in the organisation of care and support and in further research upon these issues