DE

Exploring relationship quality between people living with dementia and their informal caregivers

Santé

Stéphanie Kipfer

Most people living with dementia wish to stay in their homes as long as possible. To do so, people with dementia need support, which is mainly provided by informal caregivers. The relationship quality between persons living with dementia and their informal caregivers is an important determinant of both persons’ well-being and of the caregivers’ ability to maintain caregiving. Due to the nature of dementia, caregiving dyads are likely to experience negative changes in their relationship, such as declines in reciprocity, affection, communication or opportunities for shared activities.
The aim of this thesis is to explore the evolution of the relationship quality between informal caregivers and people with dementia in the home care setting while informal dementia caregivers participate in the psycho-educative intervention “Learning to feel better … to help better”. This 21-hours intervention conducted in small groups aims at empowering informal caregivers to cope better with the daily stress of dementia caregiving.
Two embedded models have been developed with a constructivist Grounded Theory approach based on semi-structured interviews with informal caregivers before, during and after participating in the “Learning to feel better … to help better” programme. The first model shows the strategies which informal caregivers develop and apply to maintain reciprocity and mutuality in their relationship with a person with dementia. The second model demonstrates which strategies caregivers develop and use in their daily life to cope with stressful situations. The findings provide insights on how to empower informal caregivers to sustain or improve relationship quality in their everyday caregiving life.