Young individuals who care for parents with young onset dementia require increased support and resources, according to a new study released by The Bouverie Centre at La Trobe University. The report highlights the unique challenges faced by these young carers, who often experience isolation and emotional turmoil as they navigate their responsibilities.
The study, titled Experiences and Service Needs of Young People Living with a Parent with Young Onset Dementia, reveals that young people caring for a parent under the age of 65 frequently feel cut off from their peers. Many reported enduring a sense of ambiguous grief, mourning the loss of the parent they once knew while having to manage significant changes in family dynamics. Despite these challenges, effective support systems for these young carers remain scarce.
For the research, conducted on behalf of the Young People in Nursing Homes National Alliance (YPINH), interviews with ten individuals aged between 14 and 25 were carried out. These participants provided insights into their experiences of living with a parent diagnosed with young onset dementia. “The focus on the individual with young onset dementia too often means the devastating impact on families and children is overlooked,” stated Dr. Bronwyn Morkham, head of YPINH. “We are delighted to have partnered with the Bouverie team on this important work.”
The survey explored how the diagnosis impacted the daily lives of young carers, the support available to them, and their relationships with friends, family, and health professionals. Participants expressed feelings of confusion and isolation following their parent’s diagnosis, noting a lack of understanding regarding the illness among their social circles and health care providers. Some indicated that their situation had strengthened bonds with siblings or non-affected parents, while others reported strained relationships and feelings of resentment.
While tailored support for parents with young onset dementia is essential, young carers found themselves largely unsupported. Many participants felt a pressing need for peer support and opportunities to step away from their caregiving roles, such as through respite services or activities that could enhance the parent-child relationship.
The report emphasizes the necessity for increased awareness of young onset dementia, highlighting experiences of young people being excluded from important care decisions, particularly during hospital admissions. The research team also interviewed five practitioners who work with families affected by young onset dementia to identify potential improvements in service delivery. They noted that existing support systems often appear “fractured and unfriendly,” lacking recognition of the specific needs of young people.
The study recommends comprehensive changes, including increased funding to support young carers. Additional suggestions include providing information and resources not only for young people but also for their family members, teachers, and health professionals through various channels such as schools, online forums, and social media.
“We need improved accessibility of information to ease the load for young people, who are often carrying significant burdens and experiencing role-reversed relationships in their families,” the report states. It emphasizes the importance of making resources available from the first point of contact with services. Furthermore, the study advocates for the establishment of meaningful peer support groups, allowing young people to connect with others who share similar experiences.
Training for practitioners and staff in relevant organizations is also deemed necessary. This would help ensure that professionals working in this field can continuously enhance their skills and knowledge. The report concludes with a call for broader funding across the service sector to support all the proposed changes.
The findings aim to foster greater awareness of young onset dementia, amplify the voices of young people affected by this condition, and encourage practitioners and services to better understand and address the needs of families dealing with young onset dementia. The report was co-authored by Kristel Krella, PhD candidate; Felicity Painter, Post-Doctoral Research Fellow; and Sandra Kuntsche, Associate Professor at La Trobe University. The full report can be accessed at [YPINH website](https://ypinh.org.au/wp-content/uploads/2025/07/LTU-and-YPINHA-Final-Report.pdf).
