Young individuals tasked with caring for parents diagnosed with young onset dementia are in dire need of increased support and services, according to a recent study by The Bouverie Center at La Trobe University. The research highlights the unique challenges faced by these young caregivers, who often experience isolation and significant emotional turmoil.
The study, titled “Experiences and Service Needs of Young People Living with a Parent with Young Onset Dementia,” reveals that young people supporting a parent under the age of 65 with dementia frequently feel isolated and struggle with ambiguous grief. This emotional burden is compounded by shifts in family dynamics, yet the support systems for these young caregivers remain insufficient.
Conducted for the Young People in Nursing Homes National Alliance (YPINH), the study involved interviews with 10 individuals who experienced parental young onset dementia between the ages of 14 and 25. The findings underscore a critical gap in services, as noted by Alliance head Dr. Bronwyn Morkham, who stated, “The focus on the individual with young onset dementia too often means the devastating impact on families and children is overlooked.”
The Impact on Young Caregivers
The research focused on the day-to-day effects of a dementia diagnosis, the availability of support services, and the relationships young caregivers maintain with friends, family, and professional services. Participants reported feeling isolated and confused, facing persistent stigma and a lack of understanding from peers, family members, and even health professionals.
While some young people found that their relationships with siblings or non-affected parents strengthened, others experienced increased strain and resentment. The study highlights the essential need for tailored professional support not just for the parent with dementia, but also for the young caregivers themselves.
“Young people highlighted a need for peer support, and a space to step out of their caregiver role, e.g., through respite or a supported space to enhance the parent-child relationship,” the report found.
Current Support Systems and Recommendations
Researchers also interviewed five practitioners working with families affected by young onset dementia to identify potential improvements in service delivery. The practitioners noted that existing systems are “fractured and unfriendly,” often failing to recognize the need for young caregiver support. Many young people remain unaware of available resources, and existing support is not tailored to their specific needs.
The study recommends several changes, including increased funding to better support young caregivers. It also calls for improved information dissemination and access to services through schools, online forums, and social media. These measures aim to ease the burden on young individuals who often find themselves in role-reversing family relationships.
“There is a significant need for young people experiencing parental young onset dementia to have access to meaningful peer support groups,” the report states. “Young people find value in connecting with others who can understand, identify with, and empathize with their lived experience.”
Looking Ahead: Implementing Change
The report, co-authored by La Trobe Ph.D. candidate Kristel Krella, Post-Doctoral Research Fellow Felicity Painter, and Associate Professor Sandra Kuntsche, aims to drive change within the sector. It advocates for greater awareness of young onset dementia, the amplification of young caregivers’ voices, and the development of a more supportive service environment.
Training for practitioners and organizations is emphasized to ensure professionals can continuously build their skills and knowledge. The study also calls for additional funding across the service sector to support these initiatives effectively.
“Findings are intended to bring about change in the sector to promote greater awareness of young onset dementia, to uphold the voices and lived experiences of young people living with a parent with young onset dementia, to support practitioners and services to understand and meet the needs of families facing young onset dementia, and to ensure that funding is delivered thoughtfully and efficiently,” the report concludes.
This development represents a critical step towards recognizing and addressing the unique challenges faced by young caregivers, ensuring they receive the support necessary to navigate their complex roles.
