The considerations of informal caregivers in decision-making regarding a person with dementia who lives alone

Abstract

Background: People with dementia have to make numerous decisions regarding daily life and wellbeing issues. Due to cognitive decline, a care network of formal and informal caregivers is involved in decision-making. It is expected that specific considerations play a role for informal caregivers in decision-making regarding a person with dementia who lives alone. Objective: To gain insight in the considerations of informal caregivers when making decisions regarding a person with dementia who lives alone. Method: A qualitative, multi-perspective, exploratory design. A secondary analysis was conducted on the interviews of five care networks around a person with dementia. This network consisted of a person with dementia, two informal caregivers and two formal caregivers. Each network member was interviewed three times during one year. 70 interviews were analyzed using principles of Grounded Theory. Results: Three underlying themes frame considerations of informal caregivers; 1) Provide wellbeing of the person with dementia 2) Comply to restrictions 3) Non-rational considerations. Each theme interacts with another, either conflicting or reinforcing. Conclusion: Making decisions for a person with dementia who lives alone is a difficult process. Providing wellbeing to the person with dementia whereby the person feels autonomous conflicts with having to comply to restrictions and decisions that are based on non-rational considerations. Findings highlight the importance of caregivers knowledge about dementia and insight in the decision-making process. Recommendations Professionals who support informal caregivers in decision-making regarding a person with dementia who lives alone, should acknowledge that decision-making is a difficult process with counteracting considerations. Proxy decision-makers should be provided with knowledge about dementia and insight in the decision-making process. This could be provided by case managers or at informal meetings like ‘Alzheimer café’s’.