'Nobody would say that it is Alzheimer's or dementia at this age': Family adjustment following a diagnosis of early-onset dementia

Abstract

Objectives: Family interaction and intergenerational dynamics have been known to influence the efficacy of therapeutic interventions and as such, the understanding of such dynamics in the experience of transitions can assist in strengthening the support provided to families living with such diagnoses. As such, the aims and objectives of this work were to develop a deeper understanding of family transition in early-onset dementia and to construct a representative model of this experience.

Method: This qualitative study used an 'initial-and-follow-up' interview design with semi-structured in-depth interviews in participants' homes. A framework approach to qualitative data analysis was used in order to identify important points of transition in the family experience of early-onset dementia and how families frame and respond to their own health expectations.

Results: Nine families provided written informed consent to participate in the study. The nine participating families were made up of 20 participants, including nine spousal pairs and two young adult children. Each family participated in two research interviews in their individual homes. Four major themes emerged from the data: Diagnosis; Finances; Relationships; and Meaningful Activity.

Conclusion: Transitions experienced by families in early-onset dementia can be significantly impacted by the opportunity and availability of meaningful activity and/or a purposeful role. Not only does this activity benefit both the person with dementia and their family, but also supports much needed home and community living for people with dementia, as demonstrated by predicted future bed shortages in Canadian hospitals and long term care facilities.