What is helpful in everyday living with dementia at home? Learning from families’ diverse scenarios

Abstract As the population ages and the prevalence of dementia increases, caring for a relative living at home with dementia has become a reality for many families worldwide. Studies have shown that families are confronted with diverse difficulties as they try to address the challenges involved in providing care. By understanding how they manage daily life, formal service providers become better equipped to meet the diverse needs of these families. Learning how families live with memory loss and cognitive changes calls for an understanding of the shared context surrounding the person, including the collective of people, and their connections. With the research method of ethnographic case study, we followed eight families living at home with dementia for two years. All participants had been placed on a waiting list for a specialised dementia day care programme. The analysis presented here is based on three cases which reflect widely different experiences and situations. We describe how these families dealt with their daily living at home, if and how they made use of the formal support available and what approaches they found helpful for improving their lives. The results show how the persons living with dementia and their care-givers drew on the collective of their backgrounds, surroundings and available support. With diverse arrangements, families tried to find ways to make their daily lives work out. But constant re-arrangement was necessary. This knowledge could be a central learning point for formal service to build on. While systematic or routine procedures in service provision can be helpful, time and space must be provided for professionals to understand families' different practices, so that they can provide family-centred support.