1.10 Plan to get support for children of people with young-onset dementia

A diagnosis of young-onset dementia can be especially tough for families, as it often happens at a stage of life when people are still working and raising children. Roles within the family may shift – for example, someone else may need to take on the income-earning role – and this can change the way relationships work at home. Children, even quite young children may take on aspects of caregiving. However, most dementia services and information are geared towards older people, these children can feel left out and unsupported as they try to cope with the emotional and practical impacts of dementia.

Sophie, 16, noticed her dad becoming short-tempered, prone to leaving the house without warning, and spending money inappropriately when out. After his dementia diagnosis, her mother had to take on extra work, and Sophie began caring for her younger siblings while also keeping an eye on her dad. Her plans for a gap year when she finishes school are now on hold, and she may need to work while studying part-time. Sophie feels frustrated that her plans have been derailed. Her friends don’t really understand, assuming dementia only affects older people. Feeling isolated, she starts using alcohol to cope.

Plan to maintain open communication

Age-appropriate, open and honest communication about the diagnosis, what is happening for the person living with dementia, and how it affects the family and others is critical. Talking about emotions, validating these as normal, engaging with specialist support and being able to simply explain to others (e.g. peers, teachers) about dementia can avoid misunderstanding and reduce stigma.

• Give children clear, age-appropriate explanations so they can separate their parent’s behaviour from who they are (“It’s the dementia, not Mum/Dad”).
• Dementia Australia has online age appropriate resources to help explain dementia. There are many books that help younger and older children understand dementia. Visit your local library for ideas.
• Teach simple strategies to manage behaviour and psychological symptoms, such as calm reassurance, distraction, and creating routines.

Plan for managing emotions and maintaining family connection

• Make time to talk about feelings, appropriate for their age. Let children know that feelings like anger, guilt, or grief are normal and don’t mean they love their parent any less.
• Encourage open conversations about stress and coping. Encourage safe outlets such as journaling, art, sport, and talking with friends/peers.
• Create ways to preserve memories together (e.g., photo albums, shared stories).
• Plan regular ‘switch off from dementia’ time. These might be family meals, games, or outings.
• When needed, connect with counsellors, psychologist, peer groups, or young carer networks. (See Box, below)

Plan for taking on adult roles

• Acknowledge that stepping into caring, financial or household management roles early is stressful.
• Some children may feel pressured to work sooner or take on more at home, which can affect study, friendships, and personal time.
• Encourage sharing responsibilities with siblings, extended family, or trusted adults.
• Reassure children that it’s not their job to “fix” the situation – support services exist to help.

With support, things began to improve. Sophie’s school counsellor connected her with an online young carer group, where she met others in similar situations and learned practical strategies to manage stress. After discussing with her mother, they organised sharing caregiving tasks with her younger sibling and an aunt, giving Sophie more time for study and social life. She started spending time with her dad outside her caring role, going through old photo albums and hearing his stories – these moments allowed them to enjoy each other’s company without focusing on the illness. She also started art classes as a creative outlet to help process her feelings.

Plan for understanding and managing changes

• Clear, age-appropriate explanations about the symptoms of dementia are important to enable children to separate their parent’s mood, behaviour or other changes from who they are (“It’s the dementia, not Mum/Dad”).
• Children may experience ambiguous loss, a type of grief experienced when the person is still present, but they are distant or psychologically “absent” due to changes in their personality, mood or cognition. Being aware of this type of grief is important as is seeking professional help to manage if needed. You can read more about ambiguous loss, including a list of tips for coping here
• Teach simple strategies to children to help manage behaviour and psychological symptoms of the person living with dementia, such as how to communicate, using humour or reminiscences, providing reassurance or distraction, maintaining routines and engaging in activities with the person that bring joy.

Plan for the future

• Children, especially teenagers and young adults are likely to feel frustrated about disrupted study, travel, or career goals.
• Emphasise that putting plans on hold doesn’t mean giving them up forever.
• Explore flexible options (e.g., part-time study, online courses, gap-year adjustments). Schools, higher education and workplaces often have counsellors or Human Resource specialists who can help.
• The Australian Government offers a limited number of Young Carers Bursaries which can be applied for annually to assist young carers aged 12-25 to continue education.
• For young adults, having a parent with dementia can affect decisions about moving out or starting their own family.

Plan to reduce stigma

• Help children create a simple script to explain their parent’s condition: “My mum/dad has young-onset dementia. It can make them forgetful, confused, or irritable sometimes. It’s part of the illness, not who they are.”
• Children may wish to use the ‘The person I am with has dementia’ card. This downloadable, printable card discretely alerts others that you are with a person living with dementia.
• Where possible, involve schools and community groups so children feel understood and supported.

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