Findings From a Photovoice Project to Identify Services and Support for People Living With Young Onset Dementia and Their Families.

Abstract

There is considerable variation in the provision of support and services for people living with young onset dementia in the UK. This study aimed to elicit the views of people living with young onset dementia and their families on what they want in the community, and identify gaps in support. The Photovoice approach was used to collect views from four groups of participants, over three sessions of each group. A total of four people living with young onset dementia and eight carers took part. People living with young onset dementia want to do a variety of activities, and these need to be age appropriate and "normal" things that they would have done prior to their diagnosis. Activities need to be flexible and fitted to the person rather than the person being fitted to the activity. A number of facilitators and barriers were identified. Carers' lives are now very different to what they had planned or envisaged for the future, and they value peer support. They need support to help understand information and navigate paperwork, systems and processes. The study provided insights based on lived experience into what people living with young onset dementia and their families want from support and services in the community.