A wish to know but not always tell – couples living with dementia talk about disclosure preferences

Abstract

Most research on disclosure issues in dementia has focused on what it is like to receive a dementia diagnosis. Little is known about the disclosure preferences that people with dementia and their cohabiting spouses have. In this study, we explore disclosure preferences and focus on what couples living with dementia want to know and tell about the disease. The study is based on 40 qualitative interviews (20 with people with dementia and 20 with their spouses). The analysis revealed five preference patterns regarding what the couples wanted to know and how they felt about sharing information concerning the disease with others. The patterns have been called: (1) want to know and tell (no reservations about it); (2) want to know and tell (some reservations about it); (3) want to know but do not want to tell; (4) want to know but cannot decide if we want to tell and (5) cannot agree on either knowing or telling. They show that couples’ preferences about what they want to know are related to what they are willing to tell. The findings also show that it is usually the preferences of the person that has a dementia diagnosis that guide the stand that couples take as far as disclosure issues are concerned. Thus, the findings show the type of interdependence that exists when one person in a couple has received the diagnosis, and the life of the two people as a couple is challenged as a result of this.

Keywords:

• couplehood
• dementia
• disclosure
• marital relationships