Supporting children, youth and young adults impacted by a family member with Younger Onset Dementia or Acquired Brian Injury

  • The lives of young people are changed when impacted by a family member diagnosed with younger onset dementia or acquired brain injury.
  • This study partnered with families and professionals to understand the impact of parental injury and illness on dependent children and young adults aged up to 24 years.
  • We found that dependent children of parents with ABI or YOD are not a homogenous group and support must be available at many different time points.
  • Multiple, age appropriate resources aimed at children, affected parents, co-parents and professionals were created, to help address these needs.
  • Supported by a grant from Lotterywest, and undertaken as a partnership between Brightwater and UWA, Psychological Science.

  • The Genesis - Why did we do this research?

    Currently, children and young people with an affected parent struggle with ad-hoc support and a lack of appropriate resources tailored to supporting their needs.

    Hospitalisation and medical treatments disrupt family roles, routines, and family relationships. Many children and young people also contend with the progressive decline and the life-threatening nature of their family member’s illness.

    Further, while children who develop mental health problems may be referred to mental health services, these services are directed at the mental health symptoms, and do not address the unique challenges these families face.

  • The Methods - How did we do this research?

    1) Resource and website evaluation

    2) Systematic literature review

    3) In-depth interviews with clients, parents, children and health professionals

    4) Qualitative observations by clinical psychologists

    5) Development of resources and materials

    6) Professional development seminars and workshops

    7) Survey of health professionals.

  • The Results - What did we find and what does this mean?

    • Children needed to make adjustments to their lives and relationship with parents.
    • Child feelings and emotions were significantly impacted, feeling alone and different, and experiencing an ongoing sense of loss.
    • Challenges communicating about parental ABI and YOD
    • Interruptions to child development.
    • Children need adults to understand their needs and to respond in a timely way
    • Children need connection with the affected parent
    • Children need social and professional support
    • Children need developmentally appropriate information.
    • Isolated solutions implemented at a single time point would not reach many children or assist professionals.
    • Gaps were found in age-appropriate and quality resources.
    • Resources to fill these gaps were developed in consultation with families and professionals, and designed to readily be integrated into routine care. Specifically, 4 children’s books, professional guides, and matrix of evaluated resources, websites and interventions.

  • The Outputs, Outcomes & Translation

    Matrix of recommended resources, websites and interventions.

    The children’s books published as a result of our research support children and young people to feel understood, connected and recognised.

    Resources were also developed for affected parents, co-parents and professionals to encourage a consistent approach when supporting affected children.

    The children’s books and further resources are now included as part of routine care with Brightwater. They serve as ongoing support for children and young people, supplementing care they may receive in the community.

  • The Next Steps

    Continue professional seminars.

    Dissemination of findings and resources to the community.

    Work with sector-wide services and stakeholders that support impacted families.

The Books

The Get Around

Taylor and Dad’s favourite thing is to go adventuring – they love camping, exploring and hiking. Then Dad has an accident, and everything changes. Dad is different. Life is different. Are there ways to get around the many changes and do the things they love again?

Ground Control

Riley doesn’t like English class, but he loves science, and rockets in particular. Mum and Dad are his ground control crew, cheering him on at football games and giving him a helping hand when he needs it. Then Mum has a serious car accident and Riley learns that she has a brain injury. As Mum, Dad and Riley get used to all the changes that brain injury brings into their lives, Riley wonders if anyone even cares about what he wants anymore?

Jordan's Mum

Jordan is busy getting on with the important things in life – school, soccer and mates – all supported by Mum, who checks his homework and makes her famous cupcakes when his team wins. But little by little, Jordan notices things changing. Mum’s hairdressing customers turn up at the wrong time. Then Mum gets lost at the supermarket. As Mum forgets more and more, Jordan has to figure out what is going on. Who can he rely on now?

The Amazing Brain

An activity book for a young scientist who loves someone with a brain injury.

Our children’s books were made possible by our authors, Robyn Bett and Jeneva Ohan, our illustrator Alison Mutton and our graphic designer Jean Low.

Order a book

Reports and Findings

Citation:

[Need to complete]

Keywords:

Acquired Brain Injury, Younger Onset Dementia, Children, Young People, Supporting Families

Abstract:

When adults receive a major injury, or are diagnosed with a disabling illness, it is easy for dependent children’s needs to be overlooked. Our research highlighted the impact of a parent’s diagnosis of acquired brain injury or younger onset dementia on dependent children and youth (0-24).

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People Involved

Research Conducted By

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About Brightwater's Research Centre

Brightwater recognises the important role that research plays in improving the lives of our clients, as well as the health of the broader community.

Our dedicated research centre strives to promote a research culture that reflects Brightwater’s mission; one that is informed by the knowledge and experience of clients, staff and collaborators, and is underpinned by evidence that can be translated into real-world outcomes through practice, policies and processes.

Our research priorities include brain health, ageing well, brain injury rehabilitation, independence, dementia care, quality of life, Huntington’s Disease and nutrition.