I need to be who I am : a qualitative interview study exploring the needs of people with dementia in Norway

Abstract

Objective: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services.

Methods: An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis.

Results: Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am.

Conclusions: People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.