Research project

Overview

The Bouverie Centre at La Trobe University was funded by the Young People in Nursing Homes National Alliance (YPINHA) to conduct two qualitative studies to understand and help address the needs of young people living with and potentially supporting a parent with young-onset dementia (YOD).

Young-onset dementia significantly impacts the lives of relatives of the affected individual, including children and young-adult offspring, yet their experiences and needs often go unnoticed and unmet. Adults living with YOD may still be part of the workforce, have children living at home and/or be caregiving for their own parents. They may experience symptoms that can adversely affect the wellbeing of their children and young-adult offspring, such as personality changes, memory loss, psychosis, lack of empathy, disinhibition, aggression, irritability, and apathy. Little is known about the most effective ways to support young people living with an adult with YOD (Aslett et al., 2019).

The project employed a two-stage approach to understand the needs of these young people. Study 1 included in-depth interviews with young people (n=10, age range at interview 14 – 35 years, with lived experience of parental YOD between the ages of 14 and 25 years) based on their current or previous experiences  of living with or caring for a parent with YOD. Using the findings from Study 1 to inform practitioners, Study 2 conducted two small focus groups with practitioners working in this field (n=5) to explore ideas on feasible improvements to service delivery and support systems to better meet the needs of dependent young people caring for a parent with YOD.

Qualitative content analysis of the interview transcripts identified six key domains: i) Family and day-to-day life; ii) Lived 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 offer a series of recommendations arising from both our understanding of the lived experiences of these young people and suggestions from practitioners currently working to support the needs of families facing YOD in Australia.

Key research highlights

Review findings:

• Young people experiencing parental YOD require support to understand the illness, anticipate changes in their parent and family life, and access relevant services.
• Young people need peer-support opportunities as well as respite options to ‘step back’ from caregiving roles when managing the demands of living with a parent with YOD.
• Professionals require support to enhance their skills and knowledge, particularly with age-appropriate interventions to “meet families where they are at”.

Managing the emotional and practical demands of caring for a parent with YOD can be a debilitating task for young people, who require both tailored individual and family-based support.

Research publications and shared knowledge

The-Bouveire-Centre-and-YPINHA_Final-Report.pdf

Manuscript in progress

Research project team

• Anna Booth
• Kristel Krella
• Felicity Painter
• Sandra Kuntsche