This guest blog is from the Childhood Dementia Initiative, who are working to increase awareness of dementia in children and to accelerate research in this area. 

Read on to find out about the activity of the Childhood Dementia Initiative and please get in touch with them using the links below this blog to discuss their work or explore collaboration opportunities for further research. 

Childhood dementia research: a new way forward

Just like adults who are living with dementia, children who are living with dementia experience memory loss, confusion, behavioural changes and trouble learning and communicating. Their families watch and care for them as they progressively lose their skills – including some they’ve only just gained. And just as it is for adults, dementia in childhood is life-limiting and there are few effective treatments.

Over 100 rare genetic conditions cause dementia in children, and right now, there are an estimated 700,000 lives affected globally. Sadly, 75% of children living with dementia have a life expectancy of just 18 or less, and on average, someone dies every 11 minutes from childhood dementia [1].

Why is awareness of childhood dementia so low?

If you haven’t heard of childhood dementia until now, you’re not alone. It is overlooked both as a health and social issue.

The reason for this: the way childhood dementia has been viewed. Until now, the conditions that cause childhood dementia have been considered, treated and researched individually in silos. The focus has been on underlying causes instead of how these conditions present and impact children.

Accelerating research

Childhood Dementia Initiative is driving a global response to childhood dementia conditions as a collective. This represents a paradigm shift in how these children are viewed, cared for and treated. Applying activity to all childhood dementia conditions and considering all children living with dementia together, creates opportunities for greater scale and impact. More information on this can be found in the State of Childhood Dementia Report.

For researchers, the many benefits of bringing childhood dementia conditions together include:

There is potential to build knowledge and extend progress through greater collaboration between adult and childhood dementia research. A growing body of literature suggests that common disease mechanisms exist between adult and childhood-onset dementias, e.g. neuroinflammation, mitochondrial and endolysosomal dysfunction and the accumulation of proteins and lipoproteins (e.g. P-tau, α-synuclein, cholesterol, sphingolipid) [2, 3, 4]. It was recently discovered that carriers of some childhood dementia gene mutations (previously thought to be asymptomatic), have an increased risk of developing dementia and/or Parkinson’s disease later in life (e.g. GBA, MCOLN1 and SMPD1 genes) [5]. This further cements the link between childhood and adult-onset dementia.

Join the movement

Childhood Dementia Initiative brings together peak bodies, health professionals, service providers, researchers and families to create awareness and change for children living with dementia.

Great progress has been made in building research collaborations and increasing research activity and funding since the establishment of the Childhood Dementia Initiative in 2020. The Childhood Dementia Research Alliance comprises ~120 members. Like the Scottish Dementia Research Consortium, this alliance is free to join and open to anyone with interest in childhood dementia research. Registration is now open for the world’s second Childhood Dementia Symposium to be held in Sydney, Australia, on 14 March 2023.

Childhood Dementia Initiative also raises awareness of research opportunities and drives shared infrastructure for more efficient and innovative research projects. As a first step, The Childhood Dementia Knowledgebase has been developed. It is a publicly accessible relational database that provides data for each of the 100+ rare genetic conditions that cause dementia in childhood. This includes incidence, prevalence, life expectancy, age of onset and diagnosis, genetic cause, signs and symptoms and more.

Dementia is not a normal part of life. Even children get dementia, and we need cutting-edge science to prevent, treat and cure it, giving all people, including children with dementia and their families, the best chance in life.

References

  1. THEMA Consulting Report (2020). Childhood dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society. childhooddementia.org/burdenstudy.
  2. Qureshi YH et al. Endosomal Trafficking in Alzheimer’s Disease, Parkinson’s Disease, and Neuronal Ceroid Lipofuscinosis. Mol Cell Biol. 2020 Sep 14;40(19).
  3. Torres S et al. Mitochondrial Cholesterol in Alzheimer’s Disease and Niemann-Pick Type C Disease. Front Neurol. 2019 Nov 7;10:1168.
  4. Platt FM et al. Lysosomal storage diseases. Nat Rev Dis Primers. 2018 Oct 1;4(1):27.
  5. Clark LN et al. Gene-wise association of variants in four lysosomal storage disorder genes in neuropathologically confirmed Lewy body disease. PLoS One. 2015;10(5).

More information is available on the Childhood Dementia Initiative website or by contacting their Head of Research, Dr Kristina Elvidge: kris@childhooddementia.org.

If you are part of an organisation who would like to share your work with the SDRC community, please click here to get in touch with us.

Read more SDRC Latest

The launch Scottish Brain Health and Dementia Research Strategy

Today (8 July 2021) sees the launch of the first Scottish Brain Health & Dementia Research Strategy. Prepared by Alzheimer Scotland, The Scottish Dementia Research Consortium and Brain Health Scotland, and endorsed by a broad range of national organisations, the...

Research Strategy Oversight Board Chair: Henry McLeish

The Scottish Dementia Research Consortium, Brain Health Scotland and Alzheimer Scotland are delighted to announce the appointment of Henry McLeish as the Chair of the Scottish Brain Health and Dementia Research Strategy Oversight Board.  In July 2021, the SDRC,...

Call for new members: Scottish Cognitive Ageing Network

The Scottish Cognitive Ageing Network (SCAN) was established in 2022, aimed at formalising and building on cross-institutional links in cognitive ageing research across Scotland. The inaugural meeting took place at the University of Strathclyde in May, with a second...

RCPsych Awards 2021: Nominations for Dr Tom Russ and Dr Lucy Stirland

At the SDRC, we are always excited when we can share success of dementia and brain health researchers working in Scotland. We'd like to offer our congratulations to Dr Lucy Stirland and SDRC Executive Committee Member Dr Tom Russ for their recent nominations for a...

New SDRC Executive Committee Member: Stina Saunders

Our final announcement of new SDRC Executive Committee members is Stina Saunders. We are delighted to have Stina joining us and look forward to working with her and all the new members. Find out more about Stina in the blog below.   I am in the final year of my PhD at...

SDRC Support for Early Career Researchers

The SDRC aim to be here for all dementia researchers based in Scotland. Of course, supporting ECRs is a key part of this, and we want to do all we can to nurture emerging talent and help develop the future leaders in dementia and brain health research. As was part of...

Treating dementia, what’s next and how do we get there?

On the 21st September 2021, World Alzheimer's Day, Alzheimer Scotland held their annual conference. It was a virtual event which was attended by people with dementia, carers, practitioners and other members of the public from all over Scotland.  In the afternoon...

Research in the News: Football Heading and Dementia Risk

Researchers Glasgow Brain Injury Research Group (GBIRG) led by Associate Professor Willie Stewart, have published their findings reporting a link between a footballers' outfield position and neurodegenerative risk.  Taking place at the University of Glasgow, as part...

Take part in a research study: Remote Cognitive Testing Survey

The University of Oxford are looking for volunteers from Scotland to take part in a survey about the Impact of COVID-19 on cognitive testing  The Translational Neuropsychology Lab at the University of Oxford, are investigating the impacts of COVID-19 UK lockdown on...

NHS Research Scotland Neuroprogressive and Dementia Research Network Strategy Launch

On 3rd December 2021, the NHS Research Scotland Neuroprogressive and Dementia Research Network (NRS NDN) launched a new strategy.  It sets out the Network's intention to involve, engage with, and support people with lived experience of neuroprogressive conditions or...