Accessible summary Prevalence of dementia is expected to increase globally, and as such, so is the demand on health, social, legal and financial services. It is important to understand the experience and needs of families living with dementia in order to reduce the direct and indirect costs of dementia. Maintaining purposeful activity (work or volunteering) may help to preserve the person with dementia's dignity and sense of self and also facilitate carers and family members to continue to work and support the person with dementia. The provision of high-quality and age-specific day programmes for younger people with dementia can potentially play a significant role in providing this purposeful activity in a safe and supportive environment. === 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.
Language: en
", language="en", issn="1351-0126", doi="10.1111/jpm.12154", url="http://dx.doi.org/10.1111/jpm.12154" }