“Diagnosis in the Prime of Your Life”: Facilitator Perspectives on Adapting the Living Well with Dementia (LivDem) Post-Diagnostic Course for Younger Adults

TL;DR

This study explores how to adapt a dementia support program for younger adults, based on facilitators' perspectives.

Contribution

The study provides insights into adapting the LivDem program for younger adults with dementia.

Findings

Facilitators believe LivDem can be beneficial for younger adults with dementia.

Themes highlight unique challenges and the need for age-appropriate support for younger adults.

Adapting LivDem to be age-specific is seen as important for effective support.

Abstract

The Living Well with Dementia (LivDem) group intervention aims to support people to adjust following a diagnosis of dementia and is delivered across the UK and abroad. However, LivDem was designed for older people with dementia and may not address the needs of younger adults. This study aimed to identify the perspectives of LivDem facilitators on adapting the LivDem course for younger adults. Data was collected as part of an online facilitator survey and included questions requiring either ordinal or free-text responses. Responses from fifteen facilitators were analysed using descriptive statistics and Reflexive Thematic Analysis. The former indicated that participants believed that LivDem could be beneficial for younger adults and were in favour of it being adapted. Qualitative analysis generated two main themes, the first of which (‘The domino effect’: Unique Challenges for Younger Adults) had two subthemes: ‘Life and opportunities stripped away’ and ‘Impacting on everyone’. Theme 2, ‘Good to be with peers’: The Importance of Age-Appropriate Support, also had two subthemes: Groups ‘full of old people’ and Groups ‘specifically for younger people’. These findings reinforce the argument for creating age-appropriate services for people with young-onset dementia and will inform an adapted version of LivDem that provides age-appropriate support.

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