Tim Shakespeare

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-dementia

    The 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

  • 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...

  • 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.

  • 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)

  • 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...

  • 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...

  • 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...

  • 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...

  • 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...

  • 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...

  • 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...

  • 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.

  • 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,...

  • 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...

  • 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...

  • 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.

  • 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...

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  • 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...

  • 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....

  • 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...

  • 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...

  • 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 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...

  • 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...

  • 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!

  • 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...

  • 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.

  • 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.

  • 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...

  • 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.