Families lived experiences with childhood dementia
The impacts of childhood dementia on families worldwide are substantial. Over months, years or even decades, children with dementia progressively lose their skills, functions and eventually their lives. A lack of research means there are no cures. Half of the children living with dementia die before their 10th birthdays.
Before children die, families watch their kids suffer many devastating losses while living with increasingly severe symptoms. This includes losing their cognition, speech and ability to move.
New research and mounting evidence reveals that alongside these immense impacts, families face significant gaps in care and support for children with dementia. These gaps are impeding optimal care for kids and diminishing families’ psychological, emotional, social, physical and financial health.
When a child has dementia: the symptoms and impacts
- Paediatric Neurologist - Professor Michelle Farrar
- Paediatric Neurologist - Dr Nicholas Smith
- Paediatric Neurologist - Dr Alex Johnson
- Paediatric Neuropsychiatrist - Professor Kenneth Nunn
- Postdoctoral Fellow - Dr Suzanne Nevin
- Nous Group Management Consultant - Jenny Cleary
“How common is dementia in older people? It’s upsetting to see a parent like that. To see that happening for a child who has lost all their future dreams is even more devastating.”
Niki (left), mum to Angelina (right) who has childhood dementia
Challenges and gaps in care for families when a child has dementia
Delayed diagnoses
Families report delayed diagnoses (Djafar et al. 2023; Nevin et al. 2023), with one study finding that diagnosis is typically delayed by 2 years or more after the onset of symptoms (Elvidge et al., 2023). Families in Australia report traumatic experiences including having early symptoms dismissed, downplayed or misdiagnosed (Nous Group, 2023).
Delayed diagnoses have serious consequences. Children miss out on access to the right support and care, and on the chance to be included in clinical trials. Parents are also unaware of genetic risk factors and can have more than one child with dementia.
“If we have had a childhood dementia diagnosis at the start, it would have made navigating that path an awful lot easier. Because it would have flagged to the medical team in an emergency that we were a bit complex, and we weren't quite so straightforward. Also, we as parents were not just being overanxious.” Parent of children with dementia, (Childhood Dementia Initiative, 2023)
“An earlier diagnosis would have meant that Mia would have been eligible for a trial that has since become a treatment.” Peta, mum to Mia (pictured), who died with childhood dementia
Care pathways don’t exist
In a report on experiences in Australia (Nous Group, 2023), families shared they weren't told what care and support their children needed and how to access those services. They reported zig zagging between different professionals and receiving contradicting advice.
“… so many appointments. You can imagine how exhausting it was: driving, meeting, coordinating, processing the information … and each time I had to tell the same story ...”
Lack of awareness and expertise in health systems
With a lack of awareness and expertise in the health system, parents take on the role of disease expert.
Families and health professionals report that using the term ‘childhood dementia’ in healthcare settings improves understanding and care for children. Hear directly from families and from clinicians on using the term or read more from focus groups (Childhood Dementia Initiative, 2023) and research (Djafar et al., 2023).
Parents report that they need to be treated with dignity and respect and recognised as the experts on their children (Childhood dementia Initiative, 2022; Nevin et al., 2023; Nous Group, 2023). Listening to and consulting with parents is key to ensuring appropriate care for children. Not only are parents experts on their child’s needs and what’s happening for them, they often know a great deal about the disorders affecting their children.
Recent research has revealed a critical need to prioritise access to integrated and family-centred health services and supports. Families reported the huge challenges in accessing engaged clinical teams while navigating their child's increasing symptoms and care needs (Nevin et al., 2023).
“Treatment options and information provided is very confusing and we are given multiple viewpoints from different people. In our case the haematologist said have a bone marrow transplant, and the paediatrician said 'you don’t need to do this' which meant we ended up having to do a lot of our own research.”
Ongoing grief and loss
Families face ‘multiple layers of recurring losses' (Nevin, 2023). These can include:
- Anticipatory grief
- Loss of their relationship with their child as symptoms progress
- Loss of relationships with friends and peers
- Loss of their child
- Loss of their identify after being so immersed in the care of their child
“It is heartbreaking watching her fade away.” Cindy (right), mum to Jessie Mei Mei (centre)
The burden of care is immense
Children with dementia have high care needs that progressively increase. They share substantial behavioural, motor, sensory, and socio emotional symptoms. The most prevalent traits identified in recent research include communication, comprehension and recall difficulties; sleep disturbances; mobility issues and hyperactive behaviour (Djafar et al., 2023).
Research in Australia indicates that parents manage a complex web of care and services their children need. This involves coordinating between services, managing referrals and appointments, briefing services, and managing complex medication regimes. Usually, one parent gives up their paid employment (Nous Group, 2023).
Overall, the pressure of managing their child’s care has devastating impacts on families including significant financial stress, diminished time with other children, negative impacts on siblings, relationship stress, marriage breakdown and mental health issues like anxiety, depression and trauma. Families may have more than one child with dementia and consequently need to manage the additional complexity of different care and support needs dependent on the different progression of their childrens’ conditions. Additionally, Nevin found psychosocial and physical impacts of caring increased for parents over time. (Nevin, 2023)
Access to coordinated healthcare and local support is associated with improved parent coping, reduced isolation and greater psychological resilience (Nevin et al., 2023)
Parents report they want health professionals to understand that childhood dementia impacts the whole family: “It’s not just about the individual. It’s very much about a family.” (Childhood Dementia Initiative, 2022).
“There is no real distinction between being mum, carer, project manager and you are on call 24/7. No time to be a partner anymore… that is why many couples do not make it through their time with childhood dementia.”
Families fight for support and receive inconsistent levels of care
Palliative care
Despite children with dementia having life-limiting conditions, families in Australia report inconsistent referrals to palliative care and varied levels of support. Some shared that once referred, they finally had vital support they and their children needed (Childhood Dementia Initiative, 2021; Nous Group, 2023).
Disability support
Families in Australia use words such as ‘fight’ and ‘battle’ to describe their efforts to access support through the National Disability Insurance Scheme (NDIS) (Nous Group, 2023). Many report a significant administrative burden and struggle to get the regressive nature of childhood dementia understood or accommodated. Despite knowing their children will require additional support, they are not able to seek or secure these supports until the regression has occurred. Wait times for the review and acquisition of necessary supports result in children missing essential items, severely impacting quality of life for them and their families.
Grief and bereavement support
Following the death of their child, the informal and formal community of care and support suddenly disappears, leaving behind a void and a sense of lost community for families. All members of the family need grief and bereavement support. This includes siblings and extended family members. Some families face the loss of multiple children to dementia. Some parents describe the challenge of re-entering the workforce due to their long-term carer role (Nous Group, 2023).
“You've had such a big team around you, these support workers would be sitting at the dinner table with us reading a story and suddenly all these people are gone, paediatrician, schools … it’s a really bizarre absence … this was the community that knew your son and suddenly it's all gone.”
References
Childhood Dementia Initiative. 2021. Childhood Dementia Matters 1: Key issues and comments from the consumer roundtable hosted by Palliative Care Australia and the Childhood Dementia Initiative on 24 Nov 2021. https://www.childhooddementia.org/getasset/H55HQ6
Childhood Dementia Initiative, 2022. Childhood Dementia Matters 2: What families want health professionals and service providers to know. https://www.childhooddementia.org/getasset/JZHRY4
Childhood Dementia Initiative. 2023. Childhood Dementia Matters 3: Family perspectives on the use of the term ‘childhood dementia’. https://www.childhooddementia.org/getasset/4T34XE
Djafar JV; Smith NJ; Johnson AM; Bhattacharya K; Ardern-Holmes SL; Ellaway C; Dale RC; D'Silva AM; Kariyawasam DS; Grattan S; Kandula T; Lewis K; Mohammed SS; Farrar MA, 2023, Characterizing Common Phenotypes Across the Childhood Dementia Disorders: A Cross-sectional Study From Two Australian Centers, Pediatric Neurology, 149, pp. 75 - 83, http://dx.doi.org/10.1016/j.pediatrneurol.2023.09.006
Elvidge KL, Christodoulou J, Farrar MA, Tilden D, Maack M, Valeri M, Ellis M, Smith NJC; Childhood Dementia Working Group. The collective burden of childhood dementia: a scoping review. Brain. 2023 Jul 20:awad242. doi: 10.1093/brain/awad242. Epub ahead of print. PMID: 37471493. https://doi.org/10.1093/brain/awad242
Nevin, S.M., McGill, B.C., Kelada, L. et al. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet J Rare Dis 18, 277 (2023). https://doi.org/10.1186/s13023-023-02859-3
Nous Group. 2023. ‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services.’ https://www.childhooddementia.org/getasset/44MLP8
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