brain waves and testsResearchers at the University College London (UCL) will soon be able to investigate a number of rare dementias, thanks to a funding boost from Alzheimer’s Research UK, it has been announced.

In the UK, more than 40,000 people develop dementia under the age of 65, with many experiencing atypical symptoms such as visual disturbances, problems speaking and understanding language, and behaviour and personality changes. 

This new funding boost will allow people affected by rare dementias to have more opportunities to engage in research and access support, while members of the public are being encouraged to learn more through a free Massive Open Online Course.

The extra funding will enable researchers at the UCL’s Institute of Neurology to extend the reach of five support groups for people with rare dementia. The groups, which operate under the banner of Rare Dementia Support, offer social and emotional support and provide information and research opportunities to families affected by less common diagnoses of dementia, including:

  • Inherited forms of Alzheimer’s disease
  • Posterior cortical atrophy
  • Primary progressive aphasia
  • Frontotemporal dementia
  • Inherited forms of frontotemporal dementia.

The funding will help the UCL team to support the dissemination of information across the support group network, as well as setting up new groups to engage people with research taking place throughout the country.

Professor Sebastian Crutch, a neuropsychologist at UCL who coordinates Rare Dementia Support, said: “People with rarer dementias often struggle to find appropriate information and support networks, as their needs and experiences are so distinct. Our support groups are very popular and we’re pleased that we can now expand our work to engage more families. The groups provide invaluable insight into the lives of people with these often under-studied dementias and help us identify areas of need for future research, as well as providing support and research opportunities for those affected. This funding will help us move closer to our vision of providing specialist support for all individuals with or at risk of one of these rarer forms of dementia.”

Dr Tim Shakespeare, an Alzheimer’s Research UK Research Fellow at UCL’s Institute of Neurology has also developed a free Massive Open Online Course – ‘The Many Faces of Dementia’ – in response to requests from support group members to raise awareness about less common forms of dementia. The course is aimed at anybody with an interest in dementia and will give learners insights through the stories, symptoms and science behind four less common diagnoses. It features videos of people affected by rarer forms of dementia sharing their experience, as well as interviews and discussions with leading doctors and researchers. The course is running now and more than 14,500 people have already signed up.

You can find out more and sign up at www.futurelearn.com/courses/faces-of-dementia

You can find out more about the groups operated by Rare Dementia Support at www.raredementiasupport.org