‘On The Scrap Heap’: Exploring Carers’ Perspectives on the Barriers and Facilitators of Employment for People with Young Onset Dementia

Background
Employment concerns for those with young-onset dementia is under researched both globally and in the United Kingdom (UK). Individuals with young-onset dementia are of employment age and face many barriers to maintaining employment with devastating impacts financially and psychologically.

Aims
This research explores the barriers and facilitators to employment for those with young-onset dementia to make practical recommendations to better support them in the workplace, thus aiming to reduce the likelihood of negative consequences such as financial strain and psychological distress.

Methodology
Six semi-structured interviews were conducted with carers to understand the barriers and facilitators to employment that those with young-onset dementia face. A critical realist methodology was taken, and thematic analysis was used to analyse the data.

Results
Several barriers and facilitators to employment were identified. Barriers include the following: The restrictiveness of dementia symptoms, Employers’ unhelpful approach and response to dementia, The nature of dementia as a barrier to employment, and Diagnostic process as a barrier. Facilitators include the following: Employers’ helpful approach and response to dementia, Renewed understanding of difficulties, Diagnosis as a ticket for support, and Diagnosis as a path forward.

Recommendations
Firstly, workplace education programmes and policy should be developed to raise awareness of the symptoms of young-onset dementia, to reduce associated stigma, and promote the implementation of reasonable adjustments to prevent employment loss. Employers must seek support from organisational structures, such as occupational health and human resources, whilst collaborating with the individual with young-onset dementia to identify personalised workplace adaptations. Finally, professionals working with those with young-onset dementia, such as psychologists and occupational therapists, must consider the impact of employment concerns in their work, as it can have significant implications for one’s psychosocial outcomes.