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Do you want to learn about rarer forms of dementia? - Health and Care Insights

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Susie Henley leads the free online course “The Many Faces of Dementia”, run by University College London (UCL). Here she explains the course and how you can sign up to learn more about rarer forms of dementia.

Susie Henley

Did you know that some forms of dementia can affect how people see the world around them? Or that they can cause problems with language and communication rather than just memory?

UCL’s popular, free online course, “The Many Faces of Dementia,” can teach you more about the lesser-known aspects of dementia.

The course uses videos from people with dementia, as well as discussions and articles from leading clinicians and researchers in the dementia field, to shed light on aspects of dementia that may come as a surprise.

It’s accessible, with jargon-free information; the online platform FutureLearn also means that you can dip in and out when you have time. You can complete the whole course by spending about two hours a week on it over the four-week run.

It’s a very sociable forum, with many learners commenting on the various steps and supporting each other as they learn about each other’s stories and reasons for being there.

Different aspects of dementia

Each week tackles a different aspect of dementia.

In week one, the course looks at Familial Alzheimer’s disease (FAD), rare forms of Alzheimer’s disease that are inherited, and how this affects the whole family. It also explores how research with members of these families has been enormously helpful in understanding the more common, non-inherited forms of Alzheimer’s disease.

Week two covers frontotemporal dementia (FTD), an umbrella term for a lesser-known cluster of young-onset dementias that can affect social skills and behaviour or language. In these forms of dementia, memory is relatively preserved in the early stages, so it’s very different to what most people think of as ‘dementia’. Often people with these forms of dementia have struggled to get a diagnosis and to understand what’s going on.

In the third week, we look at dementia with Lewy bodies (DLB), and typical features of this. This includes seeing things that aren’t there (hallucinations) or believing things that aren’t true (delusions). These symptoms can occur in other types of dementia, but tend to be a defining feature in dementia with Lewy bodies. We hear from families living with this dementia, and the professionals who try to help manage and minimise the impact of hallucinations.

Finally, week four talks about Posterior Cortical Atrophy (PCA), the rare variant of Alzheimer’s disease that author Terry Pratchett had. The course uses videos and pictures to show what life is like for someone with Posterior Cortical Atrophy, whose brain can no longer process visual and spatial information correctly.


Useful information for everyone

Whilst the course focuses on rarer dementia types, it’s also relevant to anyone working or living with people with all types of dementia. People with the more common forms of Alzheimer’s disease and vascular dementia can also experience these sorts of symptoms at some point.

Learners to date have been a mixture of professionals, family members, students and people with dementia. We’ve had lots of very positive feedback about how useful the new information they’ve gleaned from the course is, and how they’ve learned from each other too.

Expert staff from UCL also pop in to answer questions and comments during the week; there is a special ‘Q&A’ feature at the end of each week, where the most popular learner questions are answered online every Sunday night.

So if you are interested in exploring a bit more about these sides of dementia, or you know someone who is, encourage them to sign up and have a look.

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