Next of kin to people with dementia attending farm-based daycare: Characteristics, experiences, and respite

Abstract

Being the next of kin to a person with dementia may lead to a large burden and a decreased quality of life (QoL). Providing caregivers with information, support and respite is an overall goal in dementia care. Day care services offer activities for people with dementia as well as respite and support for the next of kin. Farm-based day care (FDC) is an additional service addressing the diverse care needs of people with dementia. However, the knowledge about the next of kin of people with dementia attending an FDC is sparse. The objective of this thesis was to gain knowledge about the next of kin of people with dementia attending FDC and their experiences with the service. Data were collected through questionnaires, standardized assessment forms and in-depth interviews. We found that 62 percent of the next of kin were living together with the person with dementia, they reported a greater burden of care and a lower level of QoL than those who did not cohabit with the person with dementia. Perceived support positively influenced the burden of care and the QoL. We also found that the next of kin’s experience of respite was linked to the well-being of their relative at the FDC. The staff facilitated meaningful activities for the attendees utilizing the farm environment and social interaction focusing on individual needs and wishes. The experience of respite was also linked to the next of kin having someone to share the caring responsibilities with and a good dialogue with the FDC staff. The transition process for the relative with dementia from the FDC to another municipality service was experienced as a highly stressful period due to the increased care needs. Despite a good dialogue and support from the staff at the FDC, a timely plan for the transition might have prevented an uneven transition and increased stress for the next of kin and the person with dementia. Nevertheless, several components of the FDC service contributed to experiences of respite and support for caregivers and may transfer to other services for the target group.