My husband is not ill; he has memory loss - caregivers´ perspectives on health care services for persons with dementia

Abstract

Abstract Background To explore informal caregivers’ perspectives and perceived needs related to health care services/activities for older adults with dementia, in order to understand barriers and facilitators to participation. The study represents a first step, and explores challenges to overcome, in order to design new activities and services adapted to older adults with dementia. Methods We used a qualitative approach where eight caregivers of people with a dementia diagnosis were included. We recruited participants from a counselling service centre, for home dwelling people with dementia and their families, in a Norwegian municipality. We transcribed data from two focus group interviews and completed analyses by use of Systematic Text Condensation method. Results The findings indicate that current health care services for people with dementia do not meet the needs of either the people with dementia or their caregivers. The few activities/services offered are characterised by passivity and lack of individual and personalised care. Existing health care services and new activities should consider each individual’s resources, interests, and physical function to ensure that both people with dementia and their caregivers want to accept support. Conclusions To develop health care services and activities for people with dementia, participation and involvement from both people with dementia and their caregivers is necessary. People with dementia are more than their diagnosis. Future health care providers have to widen their focus and consider the individual person with dementia.

Keywords

• Caregiver
• Dementia
• Activity
• Thematic analysis
• Caregiver burden