Information exchange with professionals in dementia decision-making: views of informal caregivers

Abstract

Title: Information exchange with professionals in dementia decision-making: views of informal caregivers Background: Worldwide, there are an estimated 24 million people with dementia. The majority lives at home and are largely dependent of informal caregivers. Informal caregivers are increasingly involved in care decisions for persons with dementia. Barriers to make such decisions include lack of information exchange and support. This creates unnecessary stress in informal caregivers. Shared decision-making, when facilitated by professionals, can support adequate information exchange, enabling informal caregivers to make care decisions. Aim and research question: In order to gain insight into the role of professionals in information exchange, informal caregivers’ views on professionals regarding exchanging information in care decisions should be examined. This insight might result in indications for adequate information exchange between informal caregivers and professionals. Method: This qualitative study was conducted using the principles of the Grounded Theory approach. The study population consisted of informal caregivers of persons with dementia from the Netherlands who were part of a dementia care network. The software Atlas.ti was used. Results: Informal caregivers’ views on professionals regarding information exchange in decision-making are depended on the nature of involvement. Professionals were considered to be either actively or passively involved. Informal caregivers were positive about information exchange of actively involved professionals. The information exchange of passively involved professionals was too often not consistent with their needs. Conclusion: The information exchange of professionals was too often not appropriate. Many decisions were discussed by informal caregivers with members of the care network, but these decisions were not indisputably based on shared decision-making. Decisions were mainly based on good sense and gut feeling. Recommendations: Improvement of expertise for professionals regarding dementia and support during the process of information exchange in decision-making, to ensure informal caregivers are equal partners in decision-making.