Exploring experiences and perspectives of people living with dementia and their informal carers and entrepreneurs on dementia friendly leisure activities

Abstract

Introduction: CASCADE is an European interreg two seas project which aims to develop a new holistic model of integrated care for people living with dementia PLWD, based on the principles of positive health and the values of PLWD and their informal care givers. PLWD need flexible care to maximise their independence & respond to changing needs at different points in time. At present care is either limited at home or all-encompassing in an establishment. CASCADE will enable the PLWD to remain resident in their own community, in an all-inclusive form. All-inclusive involves targeted care-delivery, but also dementia-friendly leisure activities and services. Using a social participatory action research design we explored the experiences and perspectives of PLWD, informal caregivers and entrepreneurs on dementia-friendly leisure. Theory/methods: Data were collected using the dialogue table method, ten entrepreneurs and 12 PLWD/their informal care givers were involved in sessions in Kortrijk and Heist-op-den-Berg in Flanders. Results: The sessions with PLWD provide information on the ways in which dementia is perceived by the community and how this affects their inclination to undertake activities. These also provided the conditions under which leisure activities become suitable for PLWD and what adaptations can be made to the current services and activities to suit their needs. Another key point for the informal caregivers was that they need support to undertake activities both with and without their family member with dementia. The entrepreneurs are interested in providing dementia friendly cities, but they feel more training is needed to enable this. There are many individual initiatives, but more collaboration is needed to provide a more complete offer and this needs to be promoted through a collaborative and accessible format. Discussion: There are many initiatives around tourism and leisure suitable for PLWD, but this information is hard to find. However, leisure activities are crucial in enabling PLWD to continue their participation in society, but they often receive negative reactions from the community and their behaviour is often misunderstood. This leads to feelings of anxiety in PLWD and to their gradual withdrawal from society. Conclusion: A new offer of activities suitable for PLWD is not needed, because with small adaptations, the current offer can be made more dementia-friendly. More collaboration is needed to make it easier to find suitable activities. At the same time, a more supportive and understanding society needs to be created to enable continued participation of PLWD. Lessons learned: The method of dialogue tables is a very suitable method for the population central to this research, as it enables them to speak from their own experiences, and concentrates on opportunities and wishes, not just on their limitations. Limitations: This report is based mainly on the views of the informal caregivers. The respondents have been invited on personal basis, because they were interested in this topic, this could have influenced our findings. Suggestions for future research: PLWD themselves have not been sufficiently involved in the dialogue tables, future research should take more efforts to add their voices to these findings.