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Asked by anon-220241 to Patrick, Nina, Marianne, Lorena, Emmanuelle on 11 Jun 2019.
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Nina Rzechorzek answered on 11 Jun 2019:
This is such a great question – and a really important one, because ‘dementia’ is effectively a ‘catch-all’ term for ‘a group of symptoms including memory loss, confusion, mood changes and difficulty with day-to-day tasks’. There are many different diseases that cause dementia, and whilst their symptoms overlap, they might have quite different causes and predominantly affect different areas of the brain. Here is some really helpful info from Alzheimer’s Research UK:
I think in medicine we need a clearer definition of dementia. However, until that day comes, I reckon the best way of improving knowledge is for researchers and clinicians working on dementia to engage with dementia patients, their carers, and the general public (all ages). There is so much researchers can learn from patients and carers that is often not found in a text book or online – in particular how every patient is an individual and might have a different experience of dementia or present their symptoms in a unique way; they might also have very different coping strategies. I also think its extremely important for older people not to be isolated from society – and particularly younger generations. There is an amazing scheme near where my Grandad lives that supports nursery school kids to make visits to see the elderly (many of whom have dementia) – and the learning benefits are bidirectional. A lot of people don’t realise how many other mental issues can develop alongside dementia – especially depression and anxiety; having interactions with other people, animals, or activities can help to reduce anxiety in some dementia patients (but could potentially make it worse for others).
Forums like this are a great way to engage, but there is only so much you can learn in this format. Charities such as Alzheimer’s Research UK, Dementia UK, Alzheimer’s Society all do amazing work to help engage – and they all have websites with information that is up-to-date with the research and is clearly explained. There has been a recent drive to fund more research into dementia and another great place to get info about this kind of research is the UK Dementia Research Institute website:
There are several leading researchers at my institute that work on the molecular basis of neurodegenerative diseases such as those that cause dementia and more info can be found here:
New tau structures may benefit diagnosis and treatment of head injury-associated neurodegeneration
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Marianne King answered on 12 Jun 2019:
This is a great question, because improving knowledge about dementia is something I’m quite passionate about! I think there definitely needs to be more discussion between researchers, carers and the public about dementia, because everyone has their own insight. This year my uni did a Pint of Science event – where researchers give talks in pubs (which sadly limits access for some individuals) to the public about their research – so that people could ask questions and chat to scientists about anything they wanted to know. This sort of thing can help debunk some of the poor and inaccurate reporting on dementia in some newspapers. I think that poor science reporting on dementia (and in general) needs to be better regulated, because the effects on public understanding can be so great. Programmes on TV like “Old People’s Home for Four Year Olds” and “The Restaurant that Makes Mistakes” are also good in that they show people with dementia aren’t useless, still have personalities and can still enjoy their lives, even though I believe we have a long way to go in society to make people’s lives with dementia happier. I try to fundraise for Alzheimer’s Research UK where I can, because I believe they do great work in reaching out the to public to inform them about dementia and also fund amazing research. Fundraising is a fun and easy thing to do to try and raise awareness around dementia.
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Alex commented on :
I carried out a project using data from patients diagnosed with Alzheimer’s Disease, and it really highlighted how much we still don’t know and understand about how neurological diseases develop. People often think that patient experiences are dominated by symptoms associated with memory loss, so my research tried to look into “aytpical” patients (i.e. patients whose disease starts with unusual non-memory symptoms).
We found that young onset patients (those who develop Alzheimer’s earlier than most) are more likely to experience these non-memory symptoms first, and tend to take a less common disease course. We also found that younger patients were more likely to develop language problems, impairment of judgement and have increased difficulties paying attention early on in their disease course.
Loads more research still needs to be done to understand why these symptoms develop and how we might be able to slow down the progression, so it’s a really important area to get involved with. Great to see you are interested in this!