Craig Ritchie
Director of Brain Health Scotland & Professor of Psychiatry of Ageing (University of Edinburgh). My research explores links between risk factors & expression of Alzheimer's diseases in midlife.
Location Scotland
Activity
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Craig Ritchie made a comment
Thanks everyone for posting such insightful comments - several themes emerged not least the sense that the community perception of neurodegenerative disease is a long way distant from the scientific understanding. Also - many have conveyed frustration (which I share) about the primacy of memory as a symptom and that these conditions (1) only affect older...
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Hi Susan - you were the first to comment and the last post for me to read at the end of week 1 - what a great place to finish - "a source of great hope" - see you all next week at the end of week 2.
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There are a lot of posts about 'luck' and 'fatalism' - I wonder how we address this without also creating too much responsibility and agency which can inadvertently lead to blame
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Thats a good point about the use of the term 'Alzheimer's" in many organisations - we went generic with Brain Health Scotland and had some push back about the vagueness but I think its worth sticking with as its about 'health' and can be seen as relevant across the life course
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Craig Ritchie replied to [Learner left FutureLearn]
@JoanneSaltfleet - We know that even when dementia is diagnosed in the elderly then the disease will have started in mid-life
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Countering that fatalism is key to prevention - you need to believe that the actions you take can have benefit - how we create that virtuous cycle is something we are discussing a lot at Brain Health Scotland - any thoughts?
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I think we need to move the detection of disease even earlier - the earlier we detect disease the more we can do to change its course - once anything develops momentum its harder to stop
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Agree - and have posted earlier the need to get away from the primacy of 'memory' as the cardinal feature of neurodegenerative diseases - later in the condition many other symptoms predominate and early in the course of disease memory will be absolutely normal.
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I wonder how we will perceive people when we detect disease very early before symptoms develop - I hope one day that people will say that they have early Alzheimer's disease just like they might say they have high blood pressure today
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There is certainly a disconnect between science and practice and public perception - this is a small problem with academia - in general the impact on practice is not how we are judged - but in this area, organisations like Brain Health Scotland are seeking to bridge the gap between science and practice
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Thanks - and agree - I'd hope that this course works to help a little with the education you refer to - please (if you think it is a good course) share widely with your friends/colleagues/family - if you dont like it - let us know and we can hopefully fix it :-)
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May be even earlier than that - in the PREVENT Dementia programme we are seeing changes 20-30 years before expected age of onset - very subtle but maybe very amenable to intervention.
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Sometimes I wonder about 'celebrity patients' telling their stories as each person is so different and maybe even worries if their illness doesn't look like what they see in TV or in the media - the course of disease will be very variable but hopefully with better science we can be more accurate at detecting disease really early and giving a meaningful...
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I 100% agree with the role that the medical profession has played in this narrative. There is always going to be uncertainty in a diagnosis and in a prognosis - but being uncertain is not the same as being confused. Mixed messaging and poor communication between clinician and patient is crucial - we will be working very very hard on this in Brain Health Services
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I agree too and have seen several posts saying the same thing - when we set up Brain Health Services in the near future - they will be community based and though psychiatrists (like me) may provide expert consultation - they will NOT be run by mental health services - they are brain diseases
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I agree (and say this as a psychiatrist) - but cant fathom why neurodegenerative diseases are conceptualised as mental illnesses
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@LindsayD - I agree 100% - I have no idea why we have allowed ourselves to see neurodegenerative diseases through the lens of 'memory clinics/drugs/disorders' - this will be a hard ship to turn around though
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I agree that there is always a lack of resource BUT we can use the money in the budgets more wisely - good care pathways and high profile public health work can make a huge difference - if the public is fatalistic though then these wont work so creating a Brain Health Optimism is a crucial foundational step.
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I agree that being fatalistic about neurodegenerative disease reduces the sense of agency and autonomy - many people expect to get it when they get older - I sometimes worry when people in their 60's say - 'well its my age' - I think we need to do better to counter the sense of inevitability and provide information and support to help reduce risk
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@CarolynHill - I agree that we need to be empowered to take action as and when we can - the first step though is having a risk assessment and then having expert and credible advice to what may help (and follow up) - we call this a personalised prevention plan - more of that later in the course :-)
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I am sorry to hear of your diagnosis of TLE - as Alzheimer's disease is a chronic and multifactorial condition - no one strictly speaking is immune - though we have some research ongoing looking at why some people don't ever seem to progress with Alzheimer's disease even when it starts - a bit like if you have cancer and it never spreads - if we can work out...
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We share that hope Sarah :-)
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@ShelleyGibson - as well as what Neil says - I think we need to start thinking differently about neurodegenerative diseases - they are brain diseases with cognitive symptoms NOT 'cognitive disorders' - people can have impaired cognition for a thousand and one reasons and that is not synonymous with neurodegenerative disease
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I'm sorry about your mum's friend - I agree though that the science is pointing us in a very optimistic direction and in 10 years or less we will see noticeable reductions in the number of people with late stage disease
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Awareness is certainly being raised and now with that awareness raising comes actions people can take to reduce risk and maintain well being
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We certainly need a very simple message on the distinction - I'd advocate dropping the term 'dementia' - that would help with clearing up the confusion
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I posted earlier about the need to distinguish between delirium and dementia - if you are a member of the SDRC (scottish dementia research consortium) www.sdrc.scot there is an excellent talk tomorrow evening (7th April 2021) from Prof Alistair MacLullich - you can still (all) register and if you miss it you can catch it in about a week on the SDRC YouTube...
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Agree - outside of a small (but growing) 'echo chamber' - sharing this course may help that growth but credible awareness raising of the issues we are discussing here is certainly happening - at least in Scotland
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We think that 1/3 of risk is unmodifiable (genetics and family history), 1/3 is down to other illnesses (e.g. heart disease) and lifestyle so 1/3 we don't full understand - this is maybe where 'luck' or 'bad luck' comes in but I'd hope that over time we'd get closer to understanding 100% of what causes these conditions - once we know the enemy fully we can...
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All the things you do/suggest are brilliant - see week 2. I am not aware of any specific research findings on cannabis in neurodegenerative disease BUT we have all the data we need to do this analysis in the PREVENT Dementia programme - early findings suggest that recreational drugs across the board may lead to brain changes in mid life similar to...
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The perception in the academic world has changed a lot - I agree though that at a clinical and public level these advances have not come through - maybe this course will help - please share it with friends/family/colleagues if you think it may help address this (mis)perception
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In week 3 we talk a lot about imaging and other biomarkers and its likely that these tests will pick up the disease before symptoms develop - I am personally a huge advocate of neuroimaging in almost all the people I see - I very rarely get a scan back which doesn't have an impact on my management plan with the patient. Also - longitudinal changes in...
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Just like in cancer care - the fear can be reduced substantially by better support and care - I fear that the drive for early diagnosis has in many places reduced the capacity to provide the clinical care people very often benefit from as the dementia stage of illness progresses. Alzheimer's disease need not be inevitable and 'suffering' from Alzheimer's...
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While funding will always be an issue - I also think that getting the research that has been completed into practice is as important - we can also have our cake and eat it by setting up easier mechanisms for people (and their data) to get into research a win:win
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This is a condition that will affect all parts of the world - in many ways public health approaches to brain health may mitigate the need for expensive treatment and care packages in later life
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Like Cancer from 30 years ago - there is real optimism that the disease course can be changed significantly - medicine is really quite simple: early detection = better prognosis
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The scientific knowledge is decades ahead of what is happening in 'memory' clinics all over the world - getting the research into practice and public health policy is the main objective of Brain Health Scotland - public awareness, advocacy and pressure will help for sure
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Consistent and credible information about what Alzheimer's disease is and how this is not the same as dementia is so important. With Brain Health discussions we have a bit of a blank canvas to start from so we need to be clear, consistent and credible with all the language that we use - dropping the term 'dementia' would be a good starting point for me...
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Maybe if we can detect it earlier we can cure it? Think about early detection of cancer as an analogy.
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Dementia Friends and Volunteers have been crucially important in improving the quality of life for people living with dementia and their loved ones - although people themselves may not need this level of support when they have early disease and no symptoms - I do wonder that 'our' movement may be helped by setting up Brain Health Friends/Ambassadors to help...
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You mention the dementia strategy - we are planning to produce a Brain Health Strategy for Scotland by the end of 2021 - I'd expect that many countries will follow suit in the years ahead - at least I hope so :-)
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Although I am a psychiatrist - I really struggle massively with neurodegenerative diseases being thought of as mental illnesses - maybe this will lead to some discussion
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I wonder if by the end of the course how we look at the term 'dementia' and wonder if we will start thinking about whether it is a useful term where maybe alternatives are a better and more specific reflection of the diseases leading to symptoms?
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We are trying to emulate the excellent model in Scotland for people with dementia for people with concerns about Brain Health - AHPs will play a crucial role in health promotion and maintenance of brain health as well as ensuring early mitigation of challenges a person may face does not lead to a secondary disability/isolation
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Picking up early symptoms is so important but so is helping people to seek help (and have help available) if they think they may be in a high risk group - e.g. family history, history of head injury etc - then maybe catch the diseases even earlier with theoretically an even better chance of altering the course of the disease
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If you can share this course - if you like it and think its valuable - as the more people who think about neurodegenerative diseases across the life course, the more likely we are to see policy makers and people in influential positions putting in place 'brain health' strategies
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"Dementia' is the catch-all clinical syndrome and really does quite late stage neurodegenerative disease - early onset dementia should not be confused with detecting early disease decades before a 'dementia' diagnosis might be made - this will make it less of an older persons condition - just as people in mid life can do a lot for their cardiac health,...
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Education on early symptoms for sure - but also people need to know if they are in a 'high risk' category so they can seek a check up or information to start reducing that risk - ideally many years before symptoms emerge.
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The media's role is an important one - responsible journalism can communicate hope without raising expectations too high but at the same time greater public awareness can create fear - its a fine balancing act
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The impact of this range of conditions is undoubted and the potential for both primary and secondary prevention is real - the science in some ways is the easy bit - addressing preconceptions may be the greatest challenge.
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Education also of high risk even before symptoms - we will learn about this later in the course - but if people knew they had several risk factors then they should be able to come forward for a 'check up' - that is the basic premise of the Brain Health Services we are establishing across Scotland and I 'm sure elsewhere in the years ahead.
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You raise an important point about being 'forgetful' - its often the way we describe these complex diseases - 'memory disorders/clinics/drugs' whereas the brain does so much more than just help up to remember things - especially very early in the course of disease 'memory' will be 100% unaffected and that is why we need to make sure people still come forward...
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Age is the key risk factor for sure BUT not all older people get neurodegenerative diseases - we are also now recognising that these disease start in mid life - 'Alzheimer's disease is a disease of mid-life that expresses itself clinically in older people' is a stock phrase of mine whenever i give a lecture on the topic.
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Its true that mainly older people have impactful symptoms BUT if we can identify disease early we may make that impact so much lower. Also many caregivers are younger and have to give up work or balance their work, children and supporting a parent to the detriment of their own health - in the UK this still tends to fall on the daughters rather than the sons!...
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There is certainly a higher risk if you have a family history but it is not inevitable - I had a friend who did an ApoEe4 test who lives in the US - he came back as an ApoE4 heterozygote so knew he had a slightly increased risk - he changed around his lifetstyle and I'd bet he is now at an even lower risk despite carrying a risk gene - it wont always be the...
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We spent a long time discussing with colleagues in Europe especially whether we used the term 'Brain Health' or 'Dementia Prevention' and rested on 'Brain Health' because firstly - it has relevance across the life course and secondly because we focus on 'health' and not illness (dementia in our title) we considered this much more optimistic
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Prevention always better than cure - be that primary or secondary prevention - my view is that very early secondary prevention should be our clinical priority and primary prevention our public health priority - both avenues we are addressing in Brain Health Scotland with equal commitment
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As we will learn Alzheimer's disease itself may start in mid-life or even earlier - even Alzheimer's dementia - can be diagnosed as early as in one's 30's or 40's - the earliest case I have heard of from colleagues was in a 27 year old. More often than not - Alzheimer's 'dementia' before the age of 50 is due to a genetic mutation in either the APP, PS1 or PS2...
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100% agree - mixed methods research (as well as quality improvement studies) all play an equally important part in changing the status quo
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This to me is the secondary disability caused by stigma and misunderstanding - I often see older people with a 'dementia' syndrome treated like children and losing all their agency and confidence as a result - this of course can lead to lower mood, social isolation and a poorer prognosis.
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A 'dementia' syndrome in early life is thankfully still quite rare BUT early neurodegenerative disease may be quite common - and this is where we need to make sure our language is precise - if we pick up early Alzheimer's disease in a Brain Health Service (Week 4) then we dont want people leaving the clinic thinking they have early 'dementia' - clarity is key...
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The acute hospital can certainly create a biased perception of how healthy or ill the community is - I know its an old phrase - but we have more of a 'National Illness Service' than a 'National Health Service' - investment in public health is simply a gift that keeps giving. Medical and Psychiatric comorbidities certainly play a major part in the presentation...
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Its great to see the word 'hope' come up so often in these discussions. Also think that slowing the speed to a really gentle crawl will mean that even if the diseases do progress they do so so slowly that life for the individual can go on as normal
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Understanding of disease is certainly growing and (if you dont mind me saying) will increase exponentially as scientists work more closely together and also bring in new scientific eyes to help maybe see things that people who have been in the field for a long time no longer are able to see - confirmation bias is a really pernicious deterrent to generating new...
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The move made possible by cohort studies, pubic perception and government backing has certainly opened a door for prevention - not just as an academic topic of enquiry but a real world endeavour.
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Like many illnesses - there doesn't need to be an 'inevitable' decline - I also agree that this is not just bad luck if you get it - however, we have to balance personal responsibility with the real ability to control our health - for instance there is sometimes a risk that we 'blame' people with lung cancer who were smokers for their illness or people who are...
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I think 'hope' is key and that is why I mentioned this in my introductory welcome. Early detection and improving public perception can create a blanket of optimism - so the world and the world for people with neurodegenerative diseases should and could be very different within the next 10 years.
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I certainly hope so - I dont like the term 'dementia' - but I do like the concept and delivery of 'dementia friendly communities' - making the world a less challenging place for people with neurodegenerative disease will have a greater impact (in my view) than any currently available medication. Whenever I see anyone with mobility difficulties get in and out...
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Hi Anne, like Marian - we have equated 'understanding' (or lack of) with 'stigma' - this is such an important observation - imagine if millions of people took this course - that might help address the stigma that can so undermine an individuals wellbeing and societal progress ...
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I agree - the vast majority of people in later life do NOT live with a dementia syndrome and we also shouldn't confuse older people who suffer from acute confusional states i.e. delirium with inevitably having a neurodegenerative disease - though there is a clear association between neurodegeneration and delirium (in both directions) - confusion in older...
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Exactly - its one reason I am not in favour of the umbrella term 'dementia' - we would never be satisfies to say a person has a diagnosis of 'cancer' and leave it there - we'd want to know where it is and even what subtype - and also how large and spread it has become (if at all) - in doing that we can target the most specific treatment to the patient and...
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I think the key point you raised is 'slowly progressing' - especially probably at the earliest stages in mid-life when the brain is probably otherwise quite healthy. If we can detect the start of the disease, then do you think it is possible to stop its progression and maybe even reverse the changes - i.e. 'cure'?
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There is a lot of 'stigma' for sure in certain areas of the world and often stigma arises out of a lack of understanding. I think the term 'dementia' can also be so loosely applied that if we were able to make a more accurate diagnosis, especially very early detection and also be able to predict better the future path for any individual then that would improve...
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Although this may be controversial - I wonder to what extent we may have stoked this fear - the media in particular can use very provocative language. One thing we know - and will look at in week 2 is that 'stress' is a risk factor for neurodegenerative disease via an increase in the daily total of cortisol. There is a PhD student in Ireland we are working...
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One of the biggest challenges we face is public perception of neurodegenerative disease - mainly at the 'dementia' phase of illness - unfortunately this perception is also prevalent in clinical professions - though thankfully - in both cases - this is slowly changing.
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Craig Ritchie replied to Barbara K-S
Thanks Neil!
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Craig Ritchie made a comment
Hi everyone. Welcome to this first ever MOOC specifically on Brain Health. Through today I will be responding to all the points raised in the Week 1 discussion. Hope you all enjoy week 2 :-) Craig
