Tim Shakespeare
I worked with people with less common dementias at UCL for 6 years, first as a PhD student then as an Alzheimer's Research UK fellow, starting this course in 2016. I now work in science communication.
Location University College London
Activity
-
Hi Elaine,
I'm sorry to hear about the difficult situation your friend and his wife are facing. Although I don't know how to answer this myself, I would recommend calling the Alzheimer's Society's National Dementia Helpline (0300 222 11 22, https://www.alzheimers.org.uk/helpline). Their advisors have a lot of experience helping people with information about... -
Hi Michel, yes, this is something that researchers are testing. As far as I'm aware it's a study that has started but the results are not available yet - here's a link for more information http://www.hra.nhs.uk/news/research-summaries/deep-brain-stimulation-for-patients-with-dementia-with-lewy-bodies/
-
Hi Jacqueline, you're right that at the moment the work of Rare Dementia Support is biased towards London, but they are trying to expand with more meetings in other areas. For example the FTD group has a list of contacts for a number of different regions who can provide a voluntary contact service and in some cases arrange meetings....
-
Hi Daniel,
There's some quite detailed information on the DIAN TU trial here:
https://www.nia.nih.gov/alzheimers/clinical-trials/dominantly-inherited-alzheimer-network-trial-opportunity-prevent-dementiaThe two treatments being tested are gantenerumab and solanezumab. Both are 'monoclonal antibodies' which means they attach themselves to particular...
-
Hi, hopefully this page might help https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=3334. The document it links to is quite long and involved. Perhaps one thing a business can do is ask a 'Dementia Friends Champion' to give them an information session to learn more about dementia. They can find out more about becoming a dementia...
-
Hi, people with Down's syndrome more likely to develop Alzheimer's disease but not all people Down's syndrome develop it. Estimates show that Alzheimer’s disease affects about 30% of people with Down’s syndrome in their 50s. By their 60s, this number comes closer to 50%. You can find more information about this issue here...
-
Good question! Lifestyle factors that can increase risk of dementia include smoking, drinking alcohol and lack of exercise. There's some much more detailed information here:
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=102 -
Tim Shakespeare replied to Sarah Blair
Hi, the PCA support group, part of Rare Dementia Support that we run here from the Dementia Research Centre at UCL has lots of information about PCA in general http://www.raredementiasupport.org/pca/, including this document from a group including occupational therapists in Canada, which gives some recommendations based on their experience of working with...
-
Tim Shakespeare replied to Mary Mayer
Hi Mary, yes we certainly think, from the descriptions that people give, that proprioception is affected in PCA (for others learners- proprioception is the sense of where our body parts are). However, this isn't a symptom that has been investigated in a lot of detail, it's the visual symptoms - seeing where and what things are - that are the focus of most...
-
Hi, PCA is usually 'young onset' meaning it starts before the age of 65. However, some people do develop PCA over the age of 65.
-
Tim Shakespeare replied to Dorothy Hyde
The scan I was referring to is an FDG-PET scan, you can find out more about FDG-PET here: https://en.wikipedia.org/wiki/Fludeoxyglucose_(18F) and its use in dementia diagnosis here: https://www.alz.org/national/documents/imaging_consensus_report.pdf (section IV)
-
Tim Shakespeare replied to Julie Greene
Not always, it can depend on the kind of brain scan, on the stage of the disease, and can even depend on the individual. In the later stages of the disease one would definitely expect to see changes in a brain scan, but in the early stages they might be very difficult to detect.
-
Regarding treating reversible dementia, although this is more of a question for a medical doctor I'll do my best to answer, but please don't take this as medical advice, it's far from it. There are some medical problems that can cause the symptoms of dementia, such as vitamin b12 deficiency and hypothyroidism which can be treated, and the symptoms reversed...
-
Hi,
There are many different tests that have been developed to detect the symptoms of dementia. I hadn't come across this one before.
Looking at the wider context, there are a range of tests that are routinely used, there's a good summary of them here:
https://www.alzheimers.org.uk/cognitiveassessment.The first thing I do if I'm interested to learn more...
-
Hi, I'm pleased that these discussion groups are helpful - they do stay open after the course ends so you can come back and continue using them at any time.
As far as I understand, swapping contact details isn't allowed on FutureLearn, but there are other alternatives if you'd like to continue the discussion outside of this course, if you wanted to set up a...
-
Tim Shakespeare made a comment
I just watched this incredibly moving speech from the Royal College of Nursing conference and wanted to share it with you. Dementia care campaigner Tommy Whitelaw shows how caring people are so important, and how taking time to find out about what matters to someone can make such a...
-
Hi Gillian, I'm not an optometrist so can't be 100% sure, but I think they're likely to have a very good understanding of what sorts of visual impairments relate to what sorts of problems with the eye; so if those clearly don't match up something else must be going on. I know that there is information about dementia in the training resources provided by the...
-
Tim Shakespeare made a comment
Hi, we've answered a few questions in the article above. Apologies it's a bit later than expected. Please take a look, I hope you find it interesting!
-
Hi all,
I've added some information about that drug trial to the article above. I think the bottom line from my perspective is that sadly the trial failed - the drug wasn't effective. There is a small glimmer of hope that the drug could be effective if given in a different way but the design of the trial couldn't test this possibility properly. We'll have to... -
The type of symptoms someone describes might provide a clue too. If someone describes things as being blurry, that could be an eye problem, but if someone describes words as moving around and sliding of the page; that's a symptom that's not so easy to explain as being due to the eyes; it could be more related to how vision is working in the brain.
Here's a...
-
Hi, this is a good point, and one we've tried to think about in our work with optometrists. One way can be to compare the person's responses to the aspects of eye health that can be measured. An optometrist has a number of tools they can use to look at eye health, without needing responses from the participant (for example using an ophthalmoscope to inspect...
-
Tim Shakespeare replied to Denise James
Hi Denise,
Over the past few years we've made some training available for opticians, for example writing articles in continuing education and training (CET) journals, and giving talks and seminars. We're collaborating with the College of Optometrists and have plans to create more educational materials in the future. Although this is a small start, I hope it... -
Tim Shakespeare replied to Helen Smith
This is a really interesting question - someone with PCA would be best placed to answer it as only they can speak to their own experiences; and it's not something I've talked to people with PCA about a lot.
However, there is some evidence that the parts of the brain we use for vision very much overlap with the parts of the brain we use for mental imagery;...
-
Hi George, I think there's a simple answer to this, which is yes - it's possible for people with epilepsy to develop DLB, and like-wise it's possible for someone with DLB to develop epilepsy.
There's not a lot of research that I can find about this topic, but I did find some findings from a preliminary study that suggested that about 5% of people diagnosed... -
Tim Shakespeare replied to Helen O'Leary
Hi Helen,
That sounds really difficult, I'm sorry you're experiencing such a challenging situation and really feel for you; these are difficult things to deal with. I wonder whether talking to someone on the National Dementia Helpline (in the UK 0300 222 1122; in Australia [I noticed your location on your profile] 1800 100 500) which provides information... -
Tim Shakespeare replied to Helen O'Leary
Hi Helen, I think it's not only in bvFTD that we see these symptoms, and there can be quite a lot of overlap in symptoms between conditions. One difference is that in bvFTD disinhibition and lack of empathy may be some of the very earliest symptoms but in other conditions they may develop later as the disease progresses. And the same might be said for other...
-
Hi, yes the possibility of it being distressing for participants was considered when the study was designed, so they took a number of precautions, including making sure that the participant had someone they know well with them who stayed close by, and if someone was distressed by the experience there would be a psychologist or nurse to support them.
They...
-
Tim Shakespeare made a comment
I hope you've enjoyed learning about familial Alzheimer's disease in week 1 of the course. I've added some questions and answers to this page which I hope are interesting. Looking forward to continuing the discussion next week where we'll be focusing on some very different aspects of dementia.
-
Tim Shakespeare replied to Sarah Howe
Hi Sarah,
Unfortunately the disease modifying treatments aren't available yet. What Dr Mummery meant by 'up until now' is that new treatments have been developed that we hope will be disease modifying, but the the tests to see if they are effective are still being carried out.
This site gives a bit more information about the new treatments being trialled in... -
Hi Jayne,
I wasn't sure about this so I looked it up, I found some information from my colleagues - this is preliminary work rather than a finished article (http://www.alzheimersanddementia.com/article/S1552-5260(14)00759-6/fulltext) but finds that people who have the gene and have symptoms have a rate of shrinkage of around 1.6% (looking at the brain as a... -
Hi Mary,
You're right, the brain does shrink due to age, and using these kinds of imaging techniques the amount of shrinkage (atrophy) can be measured quite accurately. What they show is that the shrinkage is about 0.2 to 0.5% per year in 'healthy aging' but in people who have Alzheimer's disease the rate of shrinkage is much faster; around 2-3% per... -
Tim Shakespeare replied to [Learner left FutureLearn]
Hi Michele,
Yes, in fact the DIAN study is led by Washington University, here in London we're just one of a number of hospitals that are part of the study. There are lots of great dementia research institutions in the US, and I couldn't possibly name them all, but the ones I'm aware of include the Mayo Clinic, UCSF, Washington University, New York University,... -
Tim Shakespeare replied to Helen O'Leary
Aricept is a drug used to improve the symptoms of Alzheimer's disease. Aricept is a brand name, the generic term is donepezil and it is an acetylcholinesterase inhibitor. Acetylcholine is a chemical messenger in the brain, the levels of which are reduced in Alzheimer's disease. Acetylcholinesterase is an enzyme that breaks down acetylcholine. Aricept reduces...
-
Hi Ivy,
There's a lot of research out there for all sorts of different aspects that might affect our chances of developing dementia. The Alzheimer's Society has done a great job of summarising the most important ones which you can read here: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=102.There is some research about...
-
Hi Alan,
This is a question that Professor Rob Howard (who you'll hear from about a different topic in Week 3) attempted to answer in a research study which was published last year. Prof Howard's team found that for one symptomatic treatment (donepezil), people who stopped taking the drug were more likely to be placed in a nursing home after a year than... -
Tim Shakespeare replied to ELVIRA MALUMBRES
Hi, I think familial Alzheimer's disease is considered to be a sub-type of Alzheimer's disease. All forms of Alzheimer's disease are characterised by deposits of amyloid and tau proteins that lead to loss of brain cells. Alzheimer's disease can be then split into two categories, familial Alzheimer's disease and sporadic Alzheimer's disease. All forms of...
-
Tim Shakespeare replied to Chris Thornton
Hi, the 5% is itself made up of lots of categories, the Alzheimer's Society has a list here: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=135, so I think it would be possible for people in that 5% to have a distinct diagnosis.
To answer the question about whether Parkinson's Disease dementia and Huntington's disease are included...
-
"We need to destigmatise with knowledge" - I think that's a great way of putting it. I do feel that this is happening, but only gradually.
-
Tim Shakespeare replied to Dorothy Hyde
Hi Dorothy, to reply to your initial question, Parkinson's disease isn't usually included in statistics of how many people have dementia. This is because dementia is defined as affecting thinking skills, and Parkinson's primarily affects movement rather than thinking. So the reason that Parkinson's wasn't included in the statistics in this video isn't because...
-
Tim Shakespeare replied to Jill Blofield
Thank you very much!
-
Thank you very much!
-
Tim Shakespeare replied to Anne Smith
Thank you very much!
-
Tim Shakespeare replied to Jill Blofield
Dear Jill,
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to Laura Ward
Dear Laura,
Thank you for your comments on the course, and for sharing your experiences with your father and his brother. I’m writing to ask whether you might be happy for me to use this comment alongside your name to help publicise future runs of the course, to encourage more people to sign up to the course and to show the impact that the course can have.... -
Tim Shakespeare replied to Anne Brink
Dear Anne,
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Dear Hazel
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to Melanie Hayward
Dear Melanie
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to Anne Smith
Dear Anne,
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to aileen callaghan
Dear Aileen,
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to David Halliday
Dear David,
Thanks for your comments on the course, I’m writing to ask whether you’d be happy for me to use this comment alongside your name to help publicise future runs of the course and to demonstrate the success of the course. Absolutely no worries if you wouldn’t be comfortable with it, if you would be happy for us to use your comment it would be much... -
Tim Shakespeare replied to Anthony SHIELDS
Thanks for the comments! Hope you don't mind me just mentioning, the video sections of this course were produced by Striker Productions (not BBC), paid for using funding from UCL. Hopefully dementia is becoming much less of a taboo subject!
-
Tim Shakespeare made a comment
I just also wanted to add a thank you to everyone who has taken part in this course, and additionally to all those who have shared their thoughts, their knowledge and experience in the comments sections. It has been really interesting to read these comments and it's been fantastic to see learners supporting each other throughout the course.
Very best... -
Tim Shakespeare made a comment
Thank you everybody for your questions and comments, it has been great to see people engaging so much with the course and supporting each other throughout. We've been able to answer a few of these questions, I've added those to the page.
-
Tim Shakespeare made a comment
Apologies in the delay in updating this to add in some answers, we've now been able to answer some of the questions and added them to the text above.
-
Tim Shakespeare replied to Andy Tysoe
Hi Andy, sorry for the confusion, I think this is due to the fact that sometimes people put vascular dementia in a different category (I guess because the cause is very different, changes in the blood supply to the brain, rather than the build-up of toxic proteins in the brain). So for example on this website...
-
Hello Jane, thank you so much for taking part, and for adding your thoughts here!
-
Hi Lorna and Gillian, there is a link between FTD and MND, it is estimated that about 1 in 10 people with FTD will also develop MND, but I am not sure how many people who have MND then devleop FTD. You can read more about this here http://www.ftdtalk.org/ftd-factsheets/factsheet-7-what-is-ftd-with-motor-neurone-disease/
-
Hi Teresa, take a look at this post from Alzheimer's Research UK that explains some of the things that can affect someone's chances of developing dementia, and some of the research being carried out http://www.dementiablog.org/can-we-prevent-alzheimers/
-
Hi, early onset (also sometimes called young onset) dementia usually means any dementia that starts before the age of 65. Familial Alzheimer's disease means that it is inherited. Most people with familial Alzheimer's disease also have an early onset. However, many people who have an early onset of dementia do not have a form of dementia that is inherited down...
-
Hi Richard,
If someone has a parent with the genetic inherited familial FTD, they have a 50% chance of developing it themselves, because there is only a 50% chance of them getting the gene that causes the disease. So on average, we would expect 50% of children to get the gene from their parent and develop the disease, and the other 50% don't get the gene... -
Tim Shakespeare made a comment
Hi, just to draw your attention to a few answers to questions now in the article above. I hope these are interesting, and we'll try to answer a few more if we can.
-
Hi, one thing we do at Rare Dementia Support is record talks at our meetings so that people who cannot attend can listen to them, you can find them at https://www.youtube.com/channel/UCuVA3iffOcwz04qBkjZgKqg we're also developing a new website which should be available in the next few months at www.raredementiasupport.org
Rare Dementia Support is also...
-
Hi, I'm glad you're enjoying it. Yes, now that you're signed up to the course you can come back and access the course at any time even after the four weeks are over.
I hope you find the rest of the course interesting! -
Tim Shakespeare replied to Kerry Nagel
Hi, yes I think in lots of ways it is a work in progress. This is the first time I've been involved in creating and running a course like this, so I'm learning a lot about it too. All feedback and advice is appreciated, as some of it we'll be able to act on straight away, and some might be helpful for the next time we run the course.
Thank you everyone for...
-
Thanks for mentioning it, I'm afraid we're a bit behind with answering the questions. I'll post them as soon as possible, and update the page to let people know.
-
Tim Shakespeare replied to Kerry Nagel
Hi all, there should be downloadable pdf transcripts everywhere now. I hope that helps, thank you for your interest in the course.
-
I think in people who cannot have an MRI scan, a CT (a sort of 3-d xray) scan might be carried out instead. CT scans do not show up as much detail as MRI scans, so it might be difficult to accurately monitor progression using a CT scan. However, a CT scan may help to check whether a stroke or tumor is causing the symptoms rather than Alzheimer's disease....
-
Hi Claire, I understand, and can see that this kind of experience wouldn't be for everyone. All the participants have it explained to them beforehand, and choose whether or not to do the tests. When designing the room, they try to make it as close to real life as possible, so the light levels are similar, and when wearing the special glasses, the images don't...
-
Hi Patricia, I think the participants in this study are in earlier stages of the condition where they're happy to take part and wear the equipment for the study. The researchers are careful to make sure people aren't getting distressed by the test and so far the participants haven't had any problems with it (see a bit more here...
-
Hi Janet, thank you for the suggestion; I just added a comment about this in the step https://www.futurelearn.com/courses/faces-of-dementia/1/comments/11397548. The researchers considered the possibility of causing distress carefully and put in place a number of precautions to monitor whether this happened, and to provide support in case there were any...
-
Hi Barbara, that's right, the participants are at a relatively mild stage of the condition, and able to understand what's being asked of them and give informed consent. The possibility of it being distressing for participants was considered when the study was designed, so they took a number of precautions, including making sure that the participant had someone...
-
In the past, Pick's disease was used to describe clinical symptoms that related to degeneration of the frontal and temporal lobes, along with the changes in the brain that were associated with those symptoms. It was defined by Arnold Pick who noted the clinical symptoms, along with a particular change in the brain of people who had these symptoms. The change...
-
[sensitive post that discusses later stages of dementia]
I believe swallowing difficulties may occur in the later stages of frontotemporal dementia as the disease spreads to affect the parts of the brain responsible for this function.
This can also be true for other forms of dementia. According to the Alzheimer's Society; 'As dementia progresses,...
-
Tim Shakespeare replied to Glenda Lewis
Hi Glenda, genetic causes of disease can work in many different ways. The three different genes that cause fAD (app, psen1, psen2) are what is called very highly penetrant. This means if you have the gene it is almost certain that you will have the associated disease. BRAC1 and 2 don't work in the same way; they increase your chance of developing cancer, but...
-
Hello, no frontotemporal dementia (previously known as Pick's disease) and Parkinson's disease are quite different.
Parkinson's disease involves a particular change in a particular part of the brain (the substantia nigra) important for movement that results in tremor, slow movement and stiff muscles.
Frontotemporal dementia (aka Pick's) describes a range... -
Hi Lynn, thank you for sharing that, it's absolutely not the intention to imply that the incidence for women is less important. I've changed it to give full sentences to both statements.
-
Hi Kath, I think which term is used might depend on the particular doctor, some will still call it Pick's Disease, whilst others may use frontotemporal dementia, and yet others may explain both terms. I agree about the fact there is still stigma attached to the word 'dementia'. I can think of two ways of changing that, one would be to use different terminology...
-
Hi, I feel this discussion has not developed to be very constructive which is a shame given the interesting debate and supportive discussion elsewhere in the course. The initial posts sharing experience of behaviour change, and making the point that what represents a change in behaviour will differ between people are relevant, and thank you for sharing these....
-
Tim Shakespeare replied to Lynn Thomas
Hi Lynn, just to add to the good points that Deborah has made, I can see why you could see it like that. What Dr Mummery means is that the central team know who has a mutation and who does not have a mutation. They use that information to make sure that people who do not have a mutation get the placebo. Of those who do have a mutation, 75% receive treatment...
-
Tim Shakespeare replied to Erin Heath
This is a difficult aspect but often essential to properly test whether the treatment works. I think when designing trials this is sometimes given consideration, and in the dian tu trial 75% of gene carriers receive the treatment (rather then the usual 50%) http://dian-tu.wustl.edu/en/dian-tu-faq/
Sometimes trials use a crossover design in which half...
-
If both parents were to have the gene mutation, the chance of not having a faulty gene would be 25% and the chance of having at least one faulty gene is 75%. The chance of having 2 faulty genes would be 25%. The chance of the child having just one faulty gene would be 50%. I'm not sure whether this has ever been documented, it would be extremely rare. Also...
-
Yes, I think the best place to look for a summary of side effects is http://www.nhs.uk/Conditions/Alzheimers-disease/Pages/Treatment.aspx it also lists the most common side effects.
-
Tim Shakespeare replied to Rebecca Gowers-Jones
I agree, recognition and understanding of dementia seems to be increasing and I would think that this could contribute to greater diagnosis. Also, dementia becomes more common in older age groups and more and more people are living longer, so this could also contribute to a greater number of people having dementia.
-
The question of how long treatments such as aricept continue to work is an important one, sometimes people feel that even if it had a good effect early on, after a few years it doesn't seem as though it's doing anything. An interesting study was published last year suggesting that continuing taking aricept was associated with a lower chance of needing to move...
-
Tim Shakespeare replied to Sarah Mitchell
Thank you for the feedback, I think that's a fair comment on the first week, I think it partially reflects the particular perspective that we come from, working in a medical research centre and neurological hospital. Whilst the course does come from that perspective, and what we're aiming to do is give an understanding of these less common forms of dementia,...
-
You've got the right idea Kim! That's right it overlays the scans to see the difference. We can't make sure the head is in exactly the same place for each scan. Instead special software is used to align the scans to each other as closely as possible. This process is called registration and is the focus of a lot of work as accurate registration is important for...
-
Tim Shakespeare replied to Philippa John-Cooke
That's a good point, we do lose brain cells as we get older, and the brain slowly shrinks. An important difference between this and dementia is how quickly the brain shrinks. In normal aging one might expect to lose around 1% of brain volume a year; in dementia this is much higher. For example the part of the brain most affected in Alzheimer's disease is...
-
Tim Shakespeare replied to Kerry Nagel
Hi that's a good thought - I'll look into making downloadable PDFs.
-
Thanks, I've added the information as you suggested.
-
Tim Shakespeare made a comment
When learning about familial Alzheimer's disease often people ask whether it might affect them. The answer is in more than 99% of people Alzheimer's disease isn’t caused by a single inherited gene. Because dementia is very common, lots of people may have a number of family members with dementia, but that doesn't mean it's inherited. It’s when there are a many...
-
I saw a few people asking about the difference between 'disease modifying' and 'symptomatic' treatments. Symptomatic treatments improve symptoms, but they don't stop the disease from progressing. Disease modifying treatments aim to slow down the progression of the disease. Symptomatic treatments are the ones that we already have and are often used (e.g....
-
Tim Shakespeare replied to Gabriel Contreras
An organisation called Alzheimer's Disease International has some global statistics which you can see here http://www.alz.co.uk/research/statistics
