Experience of Respite Care with Alternating Housing Among People with Dementia: A Mixed-Methods Study.

Background

In line with international aging policies, most people with dementia receive care at home. Community-based respite services aim to relieve, support, or share caregiving responsibilities. More person-centered knowledge based on experiences from this group is needed to increase informed decisions about planning of qualitative respite care. The aim of this study is to describe how people with dementia experience respite care with alternating housing, i.e., living partly at home, partly in residential care, refer to their everyday life and well-being.

Methods

A mixed-methods design was used. The qualitative approach focused on variations of dilemmas in interviews with people with dementia who were granted and received respite care (n = 8). Also, a quantitative approach focused on quality of life using behavioral and psychological symptom scores.

Results

Everyday life at the respite care accommodation described by people with dementia included morning routines, variation in the environment, activities in the company of roommates, but also a lack of activities. Social belonging was described by people with dementia through living with roommates and through social contact with the healthcare staff. Quality of life and behavioral and psychological ratings varied between individuals and settings, but no consistent pattern was identified.

Conclusions

Respite care appears to maintain a high quality of life and a low level of psychological symptoms for most of the people with dementia. Although the sample was small, these results are nevertheless an important contribution to the phenomenon, experiences of respite care by people with dementia, that need further research. Furthermore, these results can give decision-makers guidance for professional care efforts.