Experiences of Family Relationships When a Family Member Has Dementia

Abstract

Approximately 66 million people worldwide will suffer from dementia in 2030. The dementia’s impact affects people with the disorder and those in their social networks, most notably, their families. This study’s aim was to explore the experiences of family relationships when a family member has dementia. We conducted semi-structured interviews with people diagnosed with dementia, their spouses and adult children. Seventeen participants were interviewed. All participants were recruited in open-ended ongoing structured support groups provided by a Swedish municipality in order to elicit the participants’ subjective experiences on family relationships after the dementia diagnosis. Researchers used content analysis to examine the transcripts. Two main themes were identified, one relating to changed relationships where the participants experienced longing, lost closeness, loneliness and changed sibling relationships. The second theme related to supporting relationships within the family with experiences such as kinship, shared responsibilities and love and appreciation. Support should therefore focus on creating relationships and giving opportunities for conversations about changes within the families and difficult decisions, creating family or team support for those who need it.