'It's nice to have something to do': early-onset dementia and maintaining purposeful activity

Abstract

As the global focus on dementia care increases due to the demand on health, social, legal and financial services, it is imperative to further understand the experience of those living with a diagnosis of dementia. There is a particular lack of research focused on younger people (under the age of 65 years) with dementia and virtually none focuses on the experience of the family unit. The literature suggests that periods of transition place significant stressors on families living with dementia. One such transition is the transition out of perceived purposeful activity, be this employment or voluntary work. This transition was explored during the course of a qualitative repeated interview study with younger people with dementia and their families. Nine families (20 participants) took part in semi-structured research interviews that were transcribed and analyzed using a Framework approach to qualitative analysis. Meaningful Activity emerged as a major theme through this analysis. Two subthemes also emerged: (1) the traumatic cessation of work; and (2) the need for purposeful activity. These themes have significant clinical implications as maintaining a purposeful role through high-quality, age-specific dementia services may decrease the direct and indirect costs of dementia to global economies.

Keywords: carers/families; dementia care; employment; qualitative methodology.