‘I know his needs better than my own’

Introduction
Caring for a person with dementia predispose informal carers (carers) to mental and physical disabilities. Carers tend to focus on the needs of the person with dementia and have difficulties expressing their own needs for support. Carers are often overlooked in the rehabilitation process in dementia care even though they have a central role in supporting the person with dementia in daily life.
A systematic approach using an instrument would help facilitate identification of carers’ needs for supportive services. No such instrument has yet been developed to assess carers’ support needs within a person-centered approach.
Aim
The aim of this study is to clarify the main categories of carers’ support needs to inform the future development of an instrument to assess carers’ support needs.

Method
A qualitative approach combining focus group interviews with carers and professionals and individual interviews was used. Participants were recruited in two municipalities in Denmark. Three focus groups with carers (n=18) and two focus groups with professionals (n=13) were conducted followed by five individual interviews with carers. Inductive content analysis was used to clarify carers’ support needs.
Results
Carers’ support needs were categorised into four areas: (1) daily life when caring for a person with dementia, (2) focus on themselves, (3) maintain own well-being, and (4) communicate and interact with surroundings. Overall, carers expressed support needs in common regardless of the relation to the person with dementia. Also, carers tend to focus on the needs of the person with dementia, thus not knowing their own needs.
Conclusion
In future dementia care, new approaches in how to support carers and the person cared for are needed. The four main categories clarified in this study may inform the foundation of developing an instrument to facilitate dialogue between carers and professionals with the purpose of identifying carers’ support needs.