• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Expert Q&A: Dementia Research, Tuesday 26th March, 3-4pm

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Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
At Alzheimer's Society our research program focuses on improving care for people with dementia today and finding a cure for tomorrow.

Our next Q&A session will be on dementia research letting you ask us about our efforts, including:
  • The research Alzheimer's Society is sponsoring
  • Preventing dementia
  • Genetic therapies and the links between genetics and developing dementia
  • Caring for carers – research looking at how we can support carers to look after themselves so they can care for their loved ones
  • How you can get involved in research and what it's like to be involved
Hannah from our Research Team will be answering your questions on Tuesday 26 March between 3-4pm.

Feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask on your behalf.

See you here next Tuesday.
 
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philologus

Registered User
Nov 19, 2011
3
North East
I have read medical/scientific papers saying that certain infrared wavelengths are beneficial for dementia sufferers. My wife has FTD and I now have acces to a light with the wavelengths that proved beneficial in the tests. I will have the light in about four weeks and wondered if anyone else is researching this.
Does anyone know of other papers/results/investigations please?
George
 

Patrioted

Registered User
Jul 4, 2017
23
Based on verified test results what are the three most promising Alzheimer’s research programs with respect to arresting and/or curing Alzheimer’s disease? Please provide specifics on each. Thank you.
 

Jackimags

Registered User
Mar 1, 2019
141
South yorkshire
My husband was diagnosed with FTD
Is there any ongoing research into fronto temporal dementia. Also are there any research projects in the Sheffield area looking into FTD and speech problems?
Thank you
 

Tufty

Registered User
Jul 18, 2014
27
Bristol
Has there been any independent research into the Bredesen Protocol?

This morning I met someone whose mother is about to start on the program and he is full of hope. However, quick googling shows a lot of enthusiasm and adverts - but seems uncomfortably cult like (at least for my taste).

Fortunately I don't have to make a decision as my own Mother would not co-operate, which is seen as an essential requirement to benefit from the protocol.
 

Maggie

Registered User
Genetic therapies and the links between genetics and developing dementia
would what I am asking below be covered in the links between genetics & developing dementia with learning disability & Schizophrenia
as both are in my family Genetics family makeup on my mother's side of the family.
I have learning disabilities & my deceased brother had schizophrenia ended up with
Korsakoff's syndrome as he abused alcohol.

My deceased mother was diagnosed in Gibraltar with AZ, also her brother.
In the UK I was told it was VD because of the symptoms, mum had type 2 type diabetes



I Have been hearing a lot lately about people with a learning disability have a higher risk of developing dementia in later years.
can you please Answers is
this true?
Has there been research to prove this is true?
If it is true, why would it happen?

Also, people with schizophrenia
have a higher risk of getting dementia is this true? & why is it Ture?
If a person just has schizophrenia with learning disability & does not abuse alcohol or drugs.
Do they still have a high risk of getting dementia & if so why ?
 
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Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
Thanks for all your questions, we'll be posting answers to them this afternoon but you've still got a little bit of time if you'd like to ask Hannah a question about our research before then.
 

jugglingmum

Registered User
Jan 5, 2014
5,522
Chester
Not a question as such, but I've recently toured several of the UK's leading Biochemistry/genetics departments (dau is applying for uni) and the majority of the ones I saw mentioned (along with many other diseases) research linked to dementia - with this research forming part of teaching modules in years 2 and 3 - so many universities are researching the underlying chemistry/micro biology of how the disease causes dementia, which could be starting point to a cure. The complexities of the research involve for example working out the structure of proteins in terms of both molecular structure but also 3D structure using state of the art MRI scanners to see how they are behaving.
 

Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
Hello everyone and welcome to our Q&A session this afternoon, please can you give a warm welcome to our expert today Hannah from the society's research team. Take it away Hannah...
 

Hannah_C

Registered User
Mar 21, 2019
10
Hi everyone! I’m Hannah, Research Communications officer here at Alzheimer’s Society. I’ve been working at the society for a year now and working in science communications for 4 years. Looking forward to answering your questions about research!
 

Hannah_C

Registered User
Mar 21, 2019
10
I have read medical/scientific papers saying that certain infrared wavelengths are beneficial for dementia sufferers. My wife has FTD and I now have acces to a light with the wavelengths that proved beneficial in the tests. I will have the light in about four weeks and wondered if anyone else is researching this.
Does anyone know of other papers/results/investigations please?
George
Hi George, many thanks for your questions about infrared light therapies. I’ve had a look for published literature of research that has focused on using infrared light in people with dementias or mild cognitive impairment.

The research seems to be limited. At this stage therapies using near-infrared therapy has only been tested in very small groups of people. We need much larger and longer studies to full understand whether it is safe and beneficial for people with dementia. We’re keeping an eye on this research and will share any new developments. In the meantime there is lots information available about current treatments and support on our website.

If you are considering using this technique we’d recommend you discuss this with a doctor or consultant before you do so.

Our pages on treatments for dementia
 

Hannah_C

Registered User
Mar 21, 2019
10
Based on verified test results what are the three most promising Alzheimer’s research programs with respect to arresting and/or curing Alzheimer’s disease? Please provide specifics on each. Thank you.
Hi Patrioted, thanks for getting in touch. There’s a lot to say in this area but I’ve pulled out three programmes that we believe have real potential to, in the future, lead to a new treatment for dementia.

Firstly ‘drug repurposing’, has shown some real promise. This involves identifying drugs, which are currently being prescribed for other conditions that may also be beneficial for people with dementia. The advantage of this type of research is that can cut down the cost and time to bring drugs to people who need them the most. We’re supporting work like this through our ‘Drug Discovery programme’. We are currently looking at drugs that are used by people with diabetes (liraglutide) and rheutmatoid arthritis (TNF inhibitors) among others.

I’d also like to mention ‘Genetic therapies’ which work by using ‘molecular scissors’ to remove or silence specific genes we know are involved in causing a condition. This area of research has developed rapidly in the last few years and promising results in trials for Huntington’s disease have really drawn attention to this field. Find out more about this fast moving research field.

There are many clinical trials taking place for Alzheimer’s disease for which we eagerly await the results. Recent results of a study funded by Biogen investigating the drug BAN2401 showed some promise.

Unfortunately as you may know in recent years a number of these trials have failed. Many researchers believe this may be because we are treating people when their condition has progressed too far. A key priority for everyone in the dementia research community is finding a way to spot the very earliest signs of dementia as we know changes in the brain can begin 20 years before we see clinical symptoms. If we can identify people at this stage perhaps new treatments will be more effective. Find out more about our work in this area here.
 

Hannah_C

Registered User
Mar 21, 2019
10
My husband was diagnosed with FTD
Is there any ongoing research into fronto temporal dementia. Also are there any research projects in the Sheffield area looking into FTD and speech problems?
Thank you
Hi Jackimags, thank you for your query. Yes there is lots of research taking place into FTD. Alzheimer’s Society is supporting a number of research projects that aim to understand more about the condition itself, improve diagnosis and ultimately develop new treatments. You can read about all our research here but I’ve mentioned just a couple of our projects here:

· Detecting changes in the brain in frontotemporal dementias

· Understanding the role of key genes in frontotemporal dementia

· Investigating a potential target for treatment of frontotemporal dementia

We are, in fact, supporting a PhD studentship based at the University of Sheffield that is exploring speech therapy for people with dementia.

The best way to find out about opportunities to take part in research locally is to ask your doctor or consultant. You may also like to register with ‘Join Dementia Research’ that matches individuals to studies taking place.
 
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30 Westwood

Registered User
Feb 22, 2017
5
Dear Hannah
How is medical research into preventing/ curing dementia funded in this country?
Now that carers' and patients' needs have been the subject of so many successful and influential reports can we have a push for more funding for medical research?
 

Hannah_C

Registered User
Mar 21, 2019
10
Has there been any independent research into the Bredesen Protocol?

This morning I met someone whose mother is about to start on the program and he is full of hope. However, quick googling shows a lot of enthusiasm and adverts - but seems uncomfortably cult like (at least for my taste).

Fortunately I don't have to make a decision as my own Mother would not co-operate, which is seen as an essential requirement to benefit from the protocol.
Hi Tufty, thanks you for your query about the Bredesen Protocol, we know there are very differing views on this subject. Dr Doug Brown, who was Director of Research and Development at Alzheimer’s Society, commented previously on the Bredesen Protocol:

“Given what we already know about risk factors for dementia, it makes sense that managing health issues such as vitamin deficiencies, type 2 diabetes and high blood pressure would have a positive effect on someone’s memory and thinking abilities. Despite some claims, there is no firm evidence that this type of intensive lifestyle regime can ‘reverse’ Alzheimer’s disease, so the way this approach is being marketed is concerning.

“The research published so far involves just ten people with memory impairments and only half of these would meet the criteria for being diagnosed with Alzheimer’s disease. It’s therefore impossible to determine which, if any, of the elements in this therapy can improve memory and thinking abilities in people in the early stages of dementia.

A holistic and person-centred approach to treating dementia is welcome, but Professor Bredesen’s intervention would need to be properly tested in clinical trials so that people can make informed decisions about its benefits.”
 

Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
Martin sent us this question by email:

"I am 74, have had AD for about 4 years and have participated in several research studies in that time. Can you direct me to any others requiring AD subjects like me?

Thanks"
 

Hannah_C

Registered User
Mar 21, 2019
10
Martin sent us this question by email:

"I am 74, have had AD for about 4 years and have participated in several research studies in that time. Can you direct me to any others requiring AD subjects like me?

Thanks"
Hi Martin, thanks for your query. It's great to hear you've been involved in dementia research already. There are a number of ways you can keep tabs on research studies taking place into Alzheimer’s disease (as well as other type of dementia).

· Speak to your doctor or consultant as they may be aware of research taking place locally.

· Register with ‘Join Dementia Research’, an online platform that matches you to studies taking place in your area that you may be eligible to take part in. There are opportunities to take part in a range of different studies including clinical trials .You can register online or alternatively you can call our national helpline and they can help you to register by phone – 0300 222 11 22.

· All the latest clinical trials taking place are registered on ‘Clinicaltrials.gov’ so you may be interested to search for opportunities there.

If you’d like to be involved in research, working alongside researchers and helping Alzheimer’s Society to make funding decisions you may also be interested to join our Research Network which is made up of people who have direct experience of dementia. Find out more here: www.alzheimers.org.uk/researchnetwork
 
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Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
Also we had this question from Kathy:

"Is there any research being done on sporadically occurring ftd? If so, is there any hope on the horizon?”
 

Hannah_C

Registered User
Mar 21, 2019
10
Also we had this question from Kathy:

"Is there any research being done on sporadically occurring ftd? If so, is there any hope on the horizon?”
Hi Kathy, thanks for sending in your query about FTD. There is lots of research taking place across the globe that is studying FTD.

We are supporting a number of studies that aim to understand the tiny changes that take place in the brains of people with FTD particularly focusing on two proteins that we think damage nerve cells. A better understanding of these changes and the effects they have on brain cells will help researchers to identify mechanisms and targets that could be suitable for the development of treatments.

As I mentioned in another post, we believe the best way to develop much-needed treatments for people with frontotemporal dementia is to find the appropriate people to take part in clinical trials that are testing potential therapies. This will give us the best chance of the potential treatment being successful.

Professor Jason Warren and Dr Jon Rohrer at UCL have been developing a large programme of work to better understand frontotemporal dementia. This includes a project run by Professor Warren and funded by Alzheimer’s Society that uses brain scans to better identify frontotemporal dementia. These scans can tell us a lot about a person’s brain health, including whether their brain is shrinking or if there are any signs of damage. The research team hope these techniques will help diagnosis and early detection of frontotemporal dementia, allowing people to be enrolled in trials sooner.

There is hope on the horizon as there are dedicated and talented researchers working to understand and develop new treatments for FTD and we know more than ever about the condition.
 

Hannah_C

Registered User
Mar 21, 2019
10
Dear Hannah
How is medical research into preventing/ curing dementia funded in this country?
Now that carers' and patients' needs have been the subject of so many successful and influential reports can we have a push for more funding for medical research?
Hi Westwood

Thank you for this question! The process of awarding funding varies depending on the funding body. Charitable organisations such as Alzheimer’s Society are members of the ‘Association of Medical Research Charities’ that ensure we award funding in a rigorous and transparent way. This involves the review of all funding applications by experts in the field (known as peer review) and by people affected by dementia.

Other organisations such as the National Institute of Health Research, Medical Research Council and Economic and Social Research Council have their own processes to awards funds which they detail on their websites. They receive funding from the Department of Health among others. We, in fact, have pledged £50 million to support the UK Dementia Research Institute alongside the MRC and Alzheimer’s Research UK.

Through extensive campaigning and awareness raising we have been able to demonstrate the need for further funds to support both biomedical research as well as research to improve the care people affected by dementia receive which led to the Prime Minister’s 2020 Dementia Challenge.

We aren’t there yet and our work continues to make sure the government and large funding bodies commit to support and grow dementia research. Find out about our campaigning activity here.
 
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