As you recall, the Dementia Strikes Children Too campaign has been working to raise awareness of the conditions that affect our children and campaign for better access to services and support for our families since 2018.
Now, building on the campaign’s success in raising parliamentary awareness and prioritisation, the next step for the campaign is to demonstrate the burden of the disease and call for national guidelines for the support of patients, families and carers. The hope is to ensure we have more access to support services that are closer to home which are guided by national standards.
To do this, we have created a professional survey with supplier YouGov which will collate the results from our answers and the results of which we will share once the survey closes on the 31st October.
For the purpose of this survey, when we refer to childhood dementia as a diagnosis, it is as a symptom of one of the following groups of diseases; neuronal ceroid lipofuscinosis (NCLs), mucopolysaccharidoses or lysosomal storage diseases like Niemann-Pick type-C – so please do bear that in mind when responding!
The survey link is here and we would greatly appreciate if you could complete at your earliest opportunity!