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
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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...
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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...
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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...
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Susie Henley replied to Hanny Kooijman
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...
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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...
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Susie Henley replied to Finbar O
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.
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Susie Henley replied to Liz Dale
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.
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Susie Henley replied to Hanny Kooijman
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...
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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...
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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.
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Susie Henley replied to Mark Amistad D
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...
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Susie Henley replied to Liz Dale
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...
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Susie Henley replied to Linda Walker
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.
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Susie Henley replied to Renate Ward
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.
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Susie Henley replied to Alison Palmer
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"...
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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.
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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...
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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...
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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.
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Susie Henley replied to Barry Lowden
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...
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Susie Henley replied to Alison Palmer
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...
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Susie Henley replied to Betty Steckman
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...
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Susie Henley replied to Renate Ward
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...
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Susie Henley replied to Barry Lowden
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.
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Susie Henley replied to Sarah Giles
Hi Sarah, this link has some, and if you then click on the "rarer dementias" box you'll find some more:
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Susie Henley replied to Cherry Crawshay
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.
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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.
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Susie Henley replied to Betty Steckman
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
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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.
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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...
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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.
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I'll get in touch with Gill Livingstone and see if I can get some updates on this.
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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. -
Susie Henley replied to Barry Lowden
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...
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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...
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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.
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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.
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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...
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The website it listed in the "See also" part of the page Carla, and it has various links to information and resources.
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Have a look in the downloads:
https://www.ucl.ac.uk/psychiatry/start/Training -
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?
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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.
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Susie Henley replied to Linda Walker
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",...
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Susie Henley replied to Patricia Lear
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...
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Susie Henley replied to Barry Lowden
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 -
Susie Henley replied to Lorna Gleasure
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.aspThey 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...
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Susie Henley replied to Tina Jones
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...
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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...
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Susie Henley replied to Michelle Powers
Hi both - yes of course, you can dip and out and go over stuff as much as you would like.
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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...
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Susie Henley replied to Finbar O
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.
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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.
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Hi Jackie. It loads for me - sorry that's probably not much help. Maybe worth trying in a different browser (I'm using Firefox)
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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.
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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/
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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...
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Susie Henley replied to Hanny Kooijman
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...
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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.
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Susie Henley replied to Michelle Powers
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.
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Susie Henley replied to Margaret B
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!
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Susie Henley replied to Patricia Lear
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... -
Hi Christele, I'm so sorry to hear this. I hope you can take some comfort from the very supportive fellow learners here and feel free to dip in and out of the course at whatever pace suits you.
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Susie Henley replied to Joanne Teal
Hi everyone. Yes a whole lot of information is crucial (and this can sometimes contribute to why a diagnosis takes a long time). Many people have pointed out that some of these symptoms can mirror mental health problems and it's almost impossible to rule these things out based on one face-to-face appointment. The idea of a baseline scan is a good one, but...
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Hi Sarah. Very good questions. On one point, it is most likely that the person with behavioural variant FTD does not experience their symptoms as confusing or frightening. Some may, but usually it is in the very nature of bvFTD that the person loses insight into their behaviour and doesn't see what they are doing as problematic. They might however be upset...
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Susie Henley replied to Linda Walker
Hi Linda. This is a really good question. There isn't a right or a wrong answer, but clinically we often suggest that the time for intervention comes when people are no longer managing and / or are distressed by what is happening. If your mum is not distressed and your dad is managing then it sounds like things are ok for now. That point (at which things...
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Susie Henley replied to Finbar O
Hi everyone. Have a look at (and please use!) this document:
https://www2.rcn.org.uk/__data/assets/pdf_file/0009/549063/Triangle_of_Care_-_Carers_Included_Sept_2013.pdf
It explains to health professionals when it is likely to be in the best interests of the patient to talk to a partner or family member. It is a myth that patient data is always confidential... -
Susie Henley replied to Joanne Teal
Hi Joanne - by a mixture of everything. As with any dementia the doctors would want to talk to the patient, a family member or friend, do a brain scan, do cognitive tests and maybe even some blood tests to rule out other things, and assess their mood in case there was an element of depression as well. Brain scans can show regions where there is loss of...
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Susie Henley replied to Anita Campbell
Hi Anita. Brain scans can be really helpful, if they show loss of brain tissue that's fairly restricted to the front and/or sides (temporal lobes) of the brain - that helps make us more certain that this is something neurodegenerative rather than a mental health problem, although we would take a full history and do other examinations as well, not rely on a...
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Hi everyone. Yes, any sort of damage to the brain (stroke, tumours, hitting your head, one of the dementias) can cause similar symptoms. They key issue is where in the brain the damage is. If something damages the front of the brain (be that a car crash or a disease such as in FTD) the person will have problems with behaviour and social skills. If...
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Lyndsay I would go further and say you are always the ones with the most knowledge and insight of the patient! Yes I think collating what family members say is a very good idea too, and that is an approach that is taken in lots of scientific studies (about all sorts of things, not just dementia). What something like virtual reality allows us to do is put...
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I don't think we do yet, no - it is an extremely good question though that many people are trying to answer.
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(cont) and again, researchers are very alert for signs that the consultee may be acting misguidedly or that it might not be in the best interests of the person with dementia.
In practice it is hard to get a person with dementia to do something that they really don't want to do (even if they lack capacity and someone else has signed the consent form for them).... -
Very good question. Many people with dementia have the mental capacity to consent (or decline) to be in research themselves. They need to show that they can understand and hold in mind the relevant information, weigh up the pros and cons, and communicate a decision. "Informed consent" is a process in which they have to read all the information about a...
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Although the "pathology" diagram makes it look like there are lots of different underlying diseases in the FTD family, they fall under the same umbrella because the proteins involved are similar, there is some overlap between syndromes, and because the disease process is clearly different to that seen in something like Alzheimer's disease.
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Sean makes a good point. It is possible not to "change" syndromes really but it is possible to add in symptoms from another syndrome as the disease progresses. Syndrome just means "collection of symptoms" by the way.
If someone starts with damage to the front of the brain the symptoms are likely to be very behavioural. However the damage is likely to...
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Hi Roseann and Lyndsay. Please have a look at my comment below - no-one would be asked to do this if they were in any way upset or frightened by it. Incidentally most people with bvFTD have little or no insight into their symptoms and rarely report being anxious or frightened by them - but I appreciate that you are referring to the technology here, not just...
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Hi Catherine and Sean. Firstly please be assured that if anyone was distressed or anxious by doing this then they would be able to stop doing it - that is true of any research. The problem with bvFTD is that most of the symptoms that families tell us about are odd behaviours that aren't picked up by pencil-and-paper tests, but that happen in everyday life. ...
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Susie Henley replied to Dr Susan Strickland
Yes that's a good question, and I think they would have to tell you all about the drug (that you might or might not get) in order for you to give full informed consent to take part in the trial.
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Hi Patricia. If you have any metal in your body you can't normally have an MRI because essentially that involves lying inside a large magnet. So people with pacemakers, magnetic clips, plates for broken bones etc. cannot go near the machine or it would affect those things. If you ever have an MRI scan you'll see that you are asked to take off all metal...
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Hi Wendy. If you want to measure how much a brain is changing over time then you normally would scan at least six months apart, and more often a year. Whilst this can seem like an awful long time, the changes are simply too subtle to detect over a shorter time period for most people.
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Hi Lisa. You take two brain scans and line them up as best you can. You then measure the distance between the edges of both brains (mathematically this is "integration" but it's essentially just a measurement of the space/distance between the edges of the first brain and the second brain). The old method was to draw round the two scans separately and...
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Hi Linda. Strictly speaking the disease process in the brain can only be diagnosed by testing a brain sample, so yes, usually at post mortem. However nowadays because we know more about the different dementias we can have a high level of certainty about a diagnosis without testing the brain directly.
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Susie Henley replied to Dr Susan Strickland
TU stands for Trials Unit!
Most trials can't tell you (or the staff) what drug you're on because of the "placebo" effect - if you believe you're taking a treatment you are more likely to get better. Scientifically therefore most trials don't tell the participants or the staff administering the drugs who is getting what, so that there is no chance that any... -
There are no disease-modifying medications no. And sadly there is no evidence that the symptomatic medications affect "survival" rate (or time to death).
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Hi Wendy. Vascular dementia is a little bit different. In Alzheimer's a faulty protein builds up in the brain and kills cells, so the theory is that if we can find a drug to break up the protein (or stop it forming) we can help. The cause of vascular dementia is different. It is because of problems with the blood supply to the brain, and is linked with...
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Hi Patricia. None of the disease-modifying drugs have passed clinical trials yet - so to put it bluntly we haven't actually found any that work. We are involved in lots of trials to see if we can find one (or some) that work, which is what Dr Mummery refers to in the video.
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Susie Henley replied to Patricia Lear
I think the key phrase from Stuart is "the point at which we had empirical evidence . . ." was 2012. The drugs don't help when your symptoms are very slight, so you don't gain any benefit from taking them at that very early stage, and doctors wouldn't want to prescribe unnecessarily, they would normally be cautious and observe the changes over a period time...
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Susie Henley replied to Syd Collins
Hi Syd. Many things can be mistaken for dementia (e.g. depression) and vice versa - many people in the early stages of frontotemporal dementia are diagnoses with depression or a "mid-life crisis" for example. You can find out more about that next week.
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Susie Henley replied to Ailish Browne
Hi Ailish - there is more about testing for the gene in one of the next steps . . .
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Susie Henley replied to susan garside
Hi Sheila. No FAD cannot skip generations. You have to have one copy of the faulty gene in order to develop FAD; if you have the gene, you will get FAD. If you don't have the gene, you won't get FAD and of course if you don't have the gene you cannot pass it on to the next generation. The sorts of inherited disease that can skip generations have a more...
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Also think about my balloon analogy above. If you let air out of a balloon (like cells dying somewhere within a brain) the whole of the boundary of the balloon gets smaller, but that does not give you any information about where in the balloon the air has been lost from. Similarly the colour overlay on the scan indicates that the boundary of the brain has...
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Hi everyone. No, the green areas are errors, there is no other way to put it really. They are regions where it *looks* as if the boundary of the brain has moved outwards but we know that we cannot grown new cells in dementia. When we flick between the baseline and follow-up scan we can usually see the reason for the green is that they haven't been lined up...
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Susie Henley replied to Karen michelle Rigby
Hi again Sheila. We think that people are living longer (which increases your risk of having some form of dementia), not that it's becoming more common in itself.
There is evidence that doing things in mid-late life (like puzzles, socialising etc.) can seem to reduce your risk of developing dementia in the first place. However you are right, once that...
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Susie Henley replied to susan garside
Sorry Sheila. I meant there is no evidence that most dementias run in families. Familial AD (FAD) is a specific and very rare form of Alzheimer's disease that definitely does run in families. Young-onset AD (without the "familial") and most of the other types of dementias I list do not seem to run in families. The key word is "familial" which means...
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Hi Eileen, I think the software is available elsewhere as well, I know the scientists who work on it collaborate with others all over the world.
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Hi Paul. Yes we check it's safe to scan you! Most people can safely have a CT scan even if they can't have an MRI. A CT is not as detailed but can still be useful, and in any case we would want to do other things (clinical history, cognitive tests, chat to a family member, etc) as well as a scan, before arriving at a diagnosis.
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Really sorry everyone, a lot of people had issues last night, I will let Future Learn know.
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Hi both. "Symptomatic treatments" help people feel better, but we know that they are not stopping the disease from killing brain cells. A treatment like donepezil (sometimes known as Aricept) works by increasing a level of a chemical in the brain that brain cells use to communicate with each other, so for a while the brain cells that aren't damaged can...
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Susie Henley replied to [Learner left FutureLearn]
Here's a bit more about the scientific hypotheses behind low carb diets and coconut oil - you can see that we are still awaiting the results of a trial, but there is a hypothesis that coconut oil might increase a protein that is actually associated with Alzheimer's disease and may therefore be detrimental, so it is not clear cut. The results of the trial are...
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Susie Henley replied to joanne campbell
Hi all, there is an added complication that donepezil (Aricept) isn't recommended until you have clear symptoms. There isn't evidence that it does anything in the very early stages, and it can cause side effects. However I absolutely agree that professionals should listen to the family, who know the patient better than anyone else possibly can.
