Do you want to learn about rarer forms of dementia?

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.

Susie Henely and 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.

Sign up now

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6 comments

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If I can help on your studies I am willing .I have vascular dementia

Hi, it's great that you're interested in getting involved in our research. Please visit http://ow.ly/2NpR30cxOaL for information on our Research Network and how you can join. Thank you Peter.

Can this application filled in online pleas

I've just completed this fascinating course. I've learnt so much that I hope to use in supporting people with dementia, and can already recognise some of the more unusual symptoms. Signing up for Future Learn courses is easy - most of the hundreds of courses are free, and you learn as much or as little as you want, at your own pace.

I highly recommend it!

I have a question my wife died of Alzheimer’s in may of this year 2018 after many years. All that I have read leads mostly to prevention? My question is during the late stages she had a few moments of clarity is there something built into the brain that takes over and overrides this horrible diease?

Thank you for your comment Donald, and I’m so sorry to hear of your recent loss.

You’re quite right that, for the moment at least, the best way of ‘beating’ Alzheimer’s disease is to try to prevent it through healthy interventions during mid-life. Once a person has Alzheimer’s disease that has developed enough to cause dementia symptoms, the brain will most likely have already been severely damaged, and so drugs alone are unlikely to be able to reverse this. A lot of medical research is therefore being aimed at getting better at diagnosing these kinds of disease much earlier so that effective therapies (when they become available) can stop them in their tracks, and before too much damage is done to the brain.

The experiences you describe of your late wife’s brief periods of lucidity during the late stages of her dementia are actually not uncommon. For obvious reasons it’s not something we are able to do much research on though. Some have called this phenomenon ‘terminal lucidity’, when someone near to death has a few brief moments of being able to communicate and understands what is happening to them. In some cases it can be very reassuring and comforting, but for others it may be very disturbing.

Bereavement following the death of a partner with dementia can be incredibly tough, so please do feel free to get in touch with our support workers or advisors if you would like someone to talk to.

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