How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study

Abstract

Background: People with dementia and their relatives find decisions about the person with dementia living in a care home difficult.

Methods: We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid.

Results: Decision-makers balanced the competing priorities of remaining somewhere familiar, family's wish they remain at home, reduction of risk and effects on carer's and person with dementia's physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations.

Conclusions: There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.

Keywords: Care home; Carers; Decision-making; Dementia; Place of care.