Susie Henley

Susie Henley

I'm a Clinical Psychologist specialising in working with people with long-term neurological conditions and associated mental health difficulties.

Location Guy's and St Thomas's NHS Foundation Trust, London

Activity

  • Good question. It is not routinely used in clinics to track disease for various reasons. Once someone has a firm diagnosis tracking their rate of atrophy is highly unlikely to change their clinical care, and therefore is probably an unnecessary investigation for them. Also, clinically people would typically have around a year between MRI scans, which would...

  • Hi Anne. Side effects are different for everybody but most people find them manageable (a common side effect of donepezil, a typical drug, is to have a bit of a runny tummy for example but this usually settles). But you're right, with anyone, the individual decision is about quality of life and it may be that some people prefer to live without the drugs than...

  • Hi Tracy. Have a look here - there are links to various things that may or may not influence our risk, and the research that has been carried out on them. Some of them include our diet and lifestyle - however this is mainly in terms of how these things influence our chance of developing a dementia, rather than whether or not eating or drinking certain...

  • Hi both. No there is no time limit on the silhouette test. Actually if you are sitting there with it the right way up most people get 19 or 20 out of 20 quite quickly! Stress will definitely affect test performance but a good neuropsychologist will know this and do their best to put the person at ease, and also to interpret the test results with the mental...

  • Hi Liz. Broadly speaking "dementia" just means a progressive (getting worse), neurological (brain- & thinking-related) condition. Different dementias are caused by different disease processes (the process that kills the cells) but have in common the facts that a) more and more cells die, faster than normal and b) at present we cannot cure or halt any of...

  • Thank you Finbar. It is very heartening to read this (and the many other comments, there isn't time to reply to all) but I am especially pleased that you have felt supported by the course - the interactions between the learners are very inspiring.

  • Hi Liz. There are no disease-modifying treatments available yet (you can see a bit about trials for these in week 1). The symptomatic treatments for PCA tend to be similar to those for "typical" (memory) Alzheimer's disease as the pathology (disease) is generally the same - so donepezil is a typical drug that might offer some symptomatic benefit.

  • In the test with 4 silhouettes the person was asked to point to the "real" object (1 is real and 3 are made up) - not to name it but just to pick it out of the display. In the dot test the person has to count the dots without touching their finger to the page. These are part of a set of 8 tests (plus a screening test) to check visuoperceptual and...

  • This leaflet is quite good (for care homes and families) about how to help with visual difficulties in dementia. High contrast (e.g. white cup on dark table rather than white cup on white table) can be...

  • Hi Tina. Yes, no-one with dementia should be refused assessment or treatment of another condition just because they also have a dementia. I hope you could raise it with this gentleman's GP and ensure that he's getting all the follow-up to which he's entitled.

  • Hi Mark. Good question. If the atrophy is very subtle, then almost definitely we would need a baseline and follow-up scan from the same patient, at least 6 months apart, to show enough change for us to be certain of what we were seeing. If the atrophy is more severe, then an experienced radiologist might be quite confident just looking at a single scan that...

  • Hi Liz. When Seb mentions spotting shrinkage or tumours, that is normally done with a structural MRI scan, that shows the size and shape of the grey and white matter of the brain (but not how any of the cells are working). When he talks about imaging amyloid plaques he is talking about "positron emission tomography (PET)" scans, where the patient is injected...

  • Hi Linda - yes atrophy can show up on scans. What is harder to see (on the standard structural scans that are mainly used) is where the brain cells are still alive but not working well, so someone might show some early symptoms but the brain scan might still look quite normal, because the cells haven't started dying off in any great numbers yet.

  • I think you will find your answer in the next few steps Christele. Anatomically, language will start to be affected when the disease has spread far enough forward on the left to begin to impact on the regions of the brain that we use for language.

  • Hi everyone. Tangles and plaques don't show up on standard structural scans - these scans just show the volume of the grey and white matter and the space around the brain inside the skull. But, yes, if you looked under a microscope at a piece of posterior brain after someone with PCA had died you would usually see the same sorts of things as in "typical"...

  • Hi Michael - they are expensive to buy (because they are mostly licenced) but the expense of running them is really the salary of the person administering them and interpreting them.

  • Hi Mary. I don't think we will move to a model where we provide a first comment - we know that the material in this course can be sensitive and upsetting, but we hope there is a balance between that, and a lot of hope that things can change for the better in the field of dementia diagnosis and care. I do think it a real strength of *everybody* commenting...

  • Hi Aruna. There have been some studies looking at whether tinted lenses help, and whether reading is improved if the text is moved past a "window" so that the reader can only see a bit of each word at a time. However you are right in that these only alter the input to the brain, to try to make things a bit easier, they don't improve or treat what is actually...

  • Hi both. I can't find any info having had a quick look. I would hypothesise that a blind person developing PCA would start to have a lot of trouble navigating around familiar places (like their own home), and perhaps reading braille, but still have good memory, language and social skills.

  • Hi Barry. FDG-PET are not routinely used for diagnosis yet. Structural scans (black and white that just show the structure of the brain) are used quite a lot. PET scan with a different "tracer" (not FDG) injected that "lights up" amyloid in the brain can be ordered in rare cases when doctors really can't work out if the disease is an Alzheimer's disease...

  • Hi Alison. Brain shrinkage in any kind of dementia is faster than in normal ageing, so if we have two brain scans and can see how fast they are shrinking, that gives us an idea. Also, in something like PCA the shrinkage is quite localised to the back of the brain, whereas in normal ageing it's more uniform throughout, so that can also help us see that this...

  • Hi Betty and Diana. The thing with PCA is that sight is not affected; the part of the brain that processes sight is. So things like walking around become difficult, because the brain cannot work out what objects are in the room, and whether they are in the way of the person with PCA or not. Even with their eyes closed people with PCA could still have...

  • Hi Renate. PCA primarily (first of all) affects the visuospatial areas of the brain, that help us interpret what we see, and move in the world around us. As Ken is not reading or moving in the clip, it's unlikely that you would see anything to show you that he had PCA. In the early stages PCA does not affect language or social interaction (both of which...

  • Hi both. Not to in any way cast doubts on your intelligence or your wife's Barry, but evidence suggests that being better educated reduces your risk of dementia (and years in education correlates with IQ) - so in essence evidence doesn't suggest that the more intelligent people are, the more likely they are to get dementia.

  • Hi Sarah, this link has some, and if you then click on the "rarer dementias" box you'll find some more:

    https://www.alzheimers.org.uk/info/20007/types_of_dementia

  • Hi Cherry. The Rare Dementia Support groups leafleted all the GP practices in England a year or so ago. However, bear in mind that GPs are very overworked and are supposed (in theory) to keep up with absolutely everything, so there are unfortunately going to be some GPs who simply haven't had the time to keep up with this particular thing.

  • Hi Julia - please keep checking the START website (link at the end of the article). They are going to update it soon with the correct contact details about training.

  • Here is the full link - if that doesn't work I'm not sure what the problem is, unless it is something to do with accessing the site from outside the UK? You could try an internet search for "This is me dementia" as it's quite a well-known resource.

    https://www.alzheimers.org.uk/info/20113/publications_about_living_with_dementia/415/this_is_me

  • Hi Paul, I know, I can only say sorry for the times when the NHS doesn't get it right and unfortunately we all have examples of that.

  • Hi. The website will be updated by the START team very soon, with details of who to contact for training. If you are a relative and want to know if you can be offered START, it's best to ask your local Trust (GP) and show them the website - START is an evidence-based treatment that meets NICE guidelines for dementia so even if it is not yet offered in your...

  • Hi everyone. I've just uploaded a revised article for this page. It is still complex (because the subject matter is complex) but we have tried to reduce or explain the medical terms. I hope it is a bit more accessible now.

  • I'll get in touch with Gill Livingstone and see if I can get some updates on this.

  • Thank you everyone. Here's a more detailed explanation of "global impression":
    https://en.wikipedia.org/wiki/Clinical_Global_Impression
    I will ask Dr Weil if it's possible to edit the article to make it more accessible - I quite understand your comments and we don't want to make things hard to understand.

  • Hi Barry. I noticed that you have quite understandably asked about this a few times this week and I passed your queries on to Professor Rob Howard. Here is his reply [with comments from me in square brackets]:

    "My understanding is that PCA and DLB are distinct disorders, with different pathologies [the underlying disease] and courses [the way they change...

  • Hi Caroline. I know this is very frustrating. You could try reminding your local services of the NICE guidelines for dementia which clearly state that both people with dementia and their carers should have their psychological needs assessed, and *treated*. Have a look at section 1.8 and section 1.11.2 of...

  • Hi Sally - have a look at my comment above. It very much depends on the type (and stage) of dementia. I have done quite a bit of clinical work with people with dementia on their own, but also very frequently we involve a carer or family member as well.

  • Yes we do (and not a stupid question at all). We run a therapy service for people with dementia at the National Hospital in London. Many (but I know not all) NHS services for older people also include psychologists who will offer therapy to both people with dementia and their families.

  • Hi Carol and others - yes I'm very sorry about this Carol, it sounds very tough. It is quite common (in my experience) for people with Pick's disease (FTD) to not engage in therapies, mainly because it is often a feature of the disease that they don't have much (or any) insight into their difficulties. However I do want to point out that CBT (and other...

  • The website it listed in the "See also" part of the page Carla, and it has various links to information and resources.

  • Hi Joe - thanks for this. I think there are lots of people with this view. What would make the article more accessible do you think? Different language, or shorter, or some combination of things?

  • Hi Eileen. You are more likely to get a form of dementia as you get older, but we have lots of evidence that it is not the same as normal ageing. In normal ageing brain cells do die (slowly). In all these different dementias there are different disease processes causing brain cells to die, in specific regions of the brain and much faster than in normal ageing.

  • Really good comments and made me realise that I don't know what the evidence base is for this (whether or not it is beneficial to wake people up who are sleeping). We do know that people with dementia tend to feel more tired, which we think is related to the extra effort they put in (cognitively) to interact with the world. We also know that "stimulation",...

  • Hi Patricia. It's a good question. An MRI scan can show you if certain areas of the brain look too small (suggesting that brain cells are dying). However it cannot tell you why they have died - whether the brain is full of amyloid (seen in Alzheimer's disease), tau (more in the FTDs) or Lewy Bodies (DLB). Prof Howard is right in that the only way to truly...

  • Hi Barry. These types of jerks can be common in a number of different types of dementia - here's a link to some more information:
    https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myoclonus-Fact-Sheet

  • Hi Lorna. I think this is answered a bit later on, but here's a link that talks about it a little bit.
    http://www.alz.org/dementia/dementia-with-lewy-bodies-symptoms.asp

    They often go together, but if people have movement problems first, they tend to be given a diagnosis of PD, and if they have more cognitive/hallucinations first, they tend to be given a...

  • Well said Georgina. There is a school of thought that one must never "lie" to someone with dementia. However in my clinical experience people with dementia often experience reality quite differently to us, and for them their experience is completely real and true. It can therefore be very distressing to them if they are corrected (both because this...

  • Hi Anita and Mary. Yes Anita that is a good suggestion. Mary, carers vary in how they try to respond but from my clinical experience I think that if carers feel able to tell other people (whether this is acquaintances or strangers in the street who their loved one has behaved oddly towards) that their loved one has a rare type of dementia, this can really...

  • Hi both - yes of course, you can dip and out and go over stuff as much as you would like.

  • Hi everyone. You could try the Dementia UK helpline:
    https://www.dementiauk.org/how-we-help/admiral-nursing-direct-dementia-helpline/

    Here is a bit more general reading about behaviours that are challenging including the very sensible point that it's good to make sure that the person isn't in pain (or...

  • Thanks everyone. Very sorry to hear your story Finbar. Yes I will put it in the course content for the next run, it had been on my mind as I think I posted it in the comments last time as well so it's obviously a common query and a useful thing to have.

  • Hi Lorna. The FTD support group has produced some things like this - there is a lot of info on the website including (on the page below) a link to a flier that can be given to police and authorities to help them understand as well.

    http://www.raredementiasupport.org/ftd/support-and-advice/

  • Hi Jackie. It loads for me - sorry that's probably not much help. Maybe worth trying in a different browser (I'm using Firefox)

  • Sadly Sukhdev is right, we are aware of some people who have been convicted of crimes (sometimes with serious sentences) where with hindsight it seems likely that they had bvFTD. There are some advocates doing very good jobs of trying to raise awareness of FTD in the legal profession to try to help with this.

  • Hi Joanne. There is more here. About 1 in 10 people with FTD will develop MND and MND can also develop into FTD:

    http://www.ftdtalk.org/ftd-factsheets/factsheet-7-what-is-ftd-with-motor-neurone-disease/

  • Hi both. This depends very much on the individual, but I can share some general strategies that come up with families I work with. One is simply allowing the behaviour (if ok to do so) - e.g. if someone wants to eat sugar from the bowl, or sing whilst they're walking along, and they and others are not distressed by it, then it probably doesn't need to be...

  • Hi Hanny. Aricept (also known now more commonly as Donepezil) increases the amount of a certain chemical in the brain that is known to be low in Alzheimer's disease, and by doing so helps the brain cells communicate a bit better. So in AD whilst it doesn't stop the underlying process that is killing the cells, it can help the remaining cells function and so...

  • Indeed you can, and we think as Diane says that mixed AD and vascular (so the AD disease process plus problems with the brain's blood supply) is the most common, but as Patricia points out it's hard to know because many people may just be diagnosed with one type (or not diagnosed at all) and not followed up or assessed in more detail.

  • Hi Michelle. There is a lot to take in particularly if you hadn't had much experience of the rarer dementias before. Please say if you have specific queries or there are some aspects that you could do with clarification on.

  • Hi Margaret. They are expensive to buy (as they are usually licenced to companies and / or the people who designed them) but their running costs are essentially the cost of buying new test forms (often paper) and paying the salary of the psychologist. So the salary part is probably the biggest outlay on a day-to-day basis!

  • Hi Anita - no sadly at the moment there is nothing that we know of that slows the progression of the underlying disease. There are of course things we can try to do to support people (adapting the environment and being understanding, as well as offering the drugs that improve the symptoms a little bit).
    And Carol, sorry to hear your story which is sadly not...