More funding, services needed for young caregivers of parents with dementia

Young people who find themselves caring for a parent with young onset dementia require significantly more support and services to help them navigate the often isolating and difficult experience, a study by The Bouverie Center of La Trobe University has found.

The study, “Experiences and Service Needs of Young People Living with a Parent with Young Onset Dementia,” found young people supporting a parent with dementia aged under 65 often felt isolated, suffered ambiguous grief over the loss of the parent they had known, and were dealing with significant changes in family dynamics.

And yet, their experience often goes unnoticed and there are few effective support systems for young people in this situation.

For the study, conducted for the Young People in Nursing Homes National Alliance (YPINH), The Bouverie Center interviewed 10 people who had lived experience of parental young onset dementia when they were aged between 14 and 25 years.

“The focus on the individual with young onset dementia too often means the devastating impact on families and children is overlooked,” said Alliance head, Dr. Bronwyn Morkham. “We are delighted to have partnered with the Bouverie team on this important work.”

The survey focused on the impact the diagnosis had on their day-to-day life, available support services, and their relationships with friends, family and professional services.

Aside from managing behavior and mood changes in their parent, participants described feeling isolated and confused following the dementia diagnosis, persistent stigma and lack of understanding around the illness among their friends and family, but also among health professionals and broader systems.

Some said the situation had strengthened their relationship with their siblings or non-affected parent, while others found it strained their relationships and created resentment.

While tailored professional support for the parent with young onset dementia was essential, the young people found a general lack of support and services targeted at their age group and they often found themselves providing care and support to the parent without dementia.

“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.

“Young people described a need for more awareness of young onset dementia generally—across universal services and their existing support networks. This was noteworthy in one young person being left out of important care decisions during a hospital admission.”

Researchers also interviewed five practitioners working with families with a parent with young onset dementia to explore feasible improvements to service delivery and support systems to better meet the needs of dependent young people who are living with or caring for a parent with young onset dementia.

Practitioners said existing service systems tended to be “fractured and unfriendly,” there was a lack of recognition that support for young people was needed, young people were unaware what support existed and support that did exist was not tailored to young people.

The study recommended a range of changes including increased funding to better support young people who care for a parent with dementia.

Other recommendations were to provide information, support and access to services for young people, as well as family members, peers, teachers and professionals, including through schools, chat groups and online forums, social media and support workers.

“We need improved accessibility of information to ease the load for young people, who are often carrying significant burden and experiencing role-reversing relationships in their family. This should be made available from the first point of contact with services,” the report says.

“There is a significant need for young people experiencing parental young onset dementia to have access to meaningful peer support groups. Young people find value in connecting with others who can understand, identify with and empathize with the lived experience of having a parent with young-onset dementia.

“Training for practitioners and in organizations is needed such that professionals working in the area can continuously build on their skills and knowledge.

“More broadly, additional funding across the service sector would be helpful to support the points made above.

“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 was co-authored by La Trobe Ph.D. candidate Kristel Krella, Post-Doctoral Research Fellow Felicity Painter and Associate Professor Sandra Kuntsche.