Support Needs of Young People Who Have a Parent With Young Onset Dementia: A Qualitative Study

Young-onset dementia significantly impacts the family members of the person living with young-onset dementia. This includes adolescent and young adult offspring, who are often still living at home, yet their support needs frequently go unmet. The 'Joint Solutions Project' sought to articulate a comprehensive system of care for young-onset dementia in Australia. It undertook research, policy analysis and engagement with people with living experience of young onset dementia to develop the system of care. The current study is part of this project and aimed to explore the needs of young people who are living with or caring for a parent with young-onset dementia in Australia. We interviewed young people with lived experience of parental young-onset dementia between 15-25 years of age (n = 10) and subjected interview transcripts to a qualitative content analysis. We describe findings according to six domains: (i) Family Structure and Roles; (ii) The Emotional Experience of Living with or Caring for a Parent with Young-Onset Dementia; (iii) Sibling Experiences and Relationships; (iv) What Helped to Manage the Situation; (v) Gaps in Support; and (vi) Support in an Ideal World. We found that young people experiencing parental young-onset dementia require support to understand the illness, anticipate changes in their parent and their family life, and access relevant services. Young people need peer support opportunities as well as respite options to 'step back' from caregiving roles when living with a parent with young-onset dementia. Professional services that can both support the parent with dementia and build the capacity and knowledge of their family are critical. These services are most effective where they utilise family sensitive practice. Managing the emotional and practical demands of living with and caring for a parent with young-onset dementia can be an overwhelming task for young people, who require tailored individual and family-based support.