Dementia Support Line
Research
A new type of dementia: It’s never too LATE
An international team of researchers has identified a brain disorder, known as LATE, that mimics the symptoms of Alzheimer’s disease. Alzheimer’s Society researcher, Dr Kirsty McAleese shares what this means for dementia research.
Earlier this month the media was buzzing with excitement about a recent report identifying a ‘new type’ of dementia. The brain disorder is known as LATE (or to use its scientific name, Limbic-predominant age-associated TDP-43 encephalopathy.)
What is LATE?
LATE is described as a separate disease that can mimic the symptoms of Alzheimer’s disease such as memory problems. It is important to understand that symptoms of dementia occur due to damage to cells in part of the brain known as the hippocampus.
This damage can be caused by different things; most commonly the build-up of toxic sticky proteins, tau and amyloid that is seen in Alzheimer’s disease. In LATE there is a build-up of another toxic protein, called TDP-43. It too can damage the brain cells in the hippocampus which explains why the clinical symptoms of LATE are very similar to those of Alzheimer’s disease.
Think about it in terms of the common cold, over 200 different viruses can cause cold symptoms - there can also be several different causes of dementia symptoms. Although currently it is almost impossible for clinicians to distinguish between LATE and Alzheimer’s disease, there are some key differences.
LATE seems to affect individuals over the age of 80 years, progresses slower than Alzheimer’s disease and tends to only affect memory.
Our research on LATE
So, for all of this time, the build-up of the protein TDP-43 was hiding amongst us and we never knew about it?
Well, in fact researchers such as myself and my colleagues from Newcastle University, have been researching TDP-43 and its role in dementia for a number of years now.
In 2016, when I was an Alzheimer’s Society-funded research associate, we published research about the prevalence and importance of identifying the build-up of TDP-43 in donated human brain tissue.
The recent report showed that people with Alzheimer’s disease often have LATE as well. We have shown through our research that LATE can also be present in people with a diagnosis of dementia with Lewy bodies.
A research breakthrough
The proteins amyloid and tau have been associated with dementia for decades, but we know much less about TDP-43. After 10 years of collecting information from around the world, we are only now, starting to understand its role in dementia.
This breakthrough was only made possible by the donation of human brain tissue. Without these truly heroic and kind-hearted donations through Brains for Dementia Research and to various brain banks throughout the UK (and the world) it would not be possible for us scientists to make these essential discoveries.
What’s next?
Dr James Pickett, Head of Research at Alzheimer’s Society said:
'This type of research is the first step towards more precise diagnosis and personalised treatment for dementia, much as we’ve started to see in other serious diseases such as breast cancer.
'This evidence may also go some way to help us understand why some recent clinical trials testing treatment for Alzheimer’s disease have failed – participants may have had slightly different brain diseases.
'But, more research into LATE is required to clarify specific symptoms, identify biomarkers, understand risk factors and develop treatments.’
The key goal of the LATE report was to raise awareness of LATE and encourage more research to understand the underlying causes and its impact on public health. This will be vital to bring us a step closer to our ultimate goal of preventative, precise and personalised treatments.
Martin Cheeseman
saysAllison Ramsey
saysAnonymous
saysHello Allison, thanks for getting in touch.
Dementia can cause a person to have hallucinations or see things that aren't there. This is most common in people living with dementia with Lewy bodies, although other types of dementia may also cause hallucinations, including LATE. Visual hallucinations are usually caused by damage to the brain.
We have more information about hallucinations on our website (https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/hallucinations) and available within our factsheet on Changes in perception (https://www.alzheimers.org.uk/sites/default/files/pdf/sight_perception_and_hallucinations_in_dementia.pdf).
We’d strongly recommend speaking with the GP about changes in dementia symptoms, especially if the hallucinations are a big cause of concern.
You can also speak with a dementia adviser through our support line on 0333 150 3456 if you need dementia information, advice or support. You can read more about the Dementia Connect support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now.
Alzheimer’s Society blog team
Mark Jensen
saysCan LATE also affect younger adults? My wife is 61 and has been diagnosed with Frontotemporal dementia. She mainly has the same symptoms as Alzheimer’s.
memory loss (impairment in episodic memory)
trouble finding and understanding words (impairment in semantic memory)
trouble keeping information in mind (impairment in working memory).
Anonymous
saysHi Mark,
Thanks for your comment, and sorry to hear about your wife’s diagnosis.
LATE dementia was only recently identified, so we are still learning about the condition and how it affects people. However, symptoms associated with LATE tend to affect people over the age of 80.
Many of the diseases that cause dementia have overlapping symptoms, which is why your wife might be having Alzheimer’s-like symptoms, whilst being diagnosed with frontotemporal dementia.
If you’re worried that your wife’s diagnosis may not be the right one, you should talk to her doctor or a healthcare professional about your concerns.
In the meantime, if you or your wife need any dementia advice or support, please call our Dementia Connect support line on 0333 150 3456.
I hope this is helpful, Mark.
Many thanks,
Alzheimer’s Society web team
ellen douglas
saysGillian Booth
saysYou haven't mentioned the genetics of dementia. Four of my mother's siblings developed dementia in their early 80s. I have bipolar 2 disorder and at 70 I am experiencing early signs of memory loss and loss of working memory. Is heredity a factor? Is there a link to bipolar disorder?
Anonymous
saysThanks for getting in touch, Gillian.
Please do call our Dementia Connect support line on 0333 150 3456 to speak with a dementia adviser. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
In the meantime, we do have information on the genetics of dementia that may be of interest. You can download a digital (PDF) copy of a factsheet, or you can request a paper version in the post. It's called 'Genetics of dementia', factsheet reference 405LP: https://www.alzheimers.org.uk/about-dementia/risk-factors-and-preventio…
We also have a webpage to help you understand the genetic links for different types of dementia: https://www.alzheimers.org.uk/about-dementia/risk-factors-and-preventio…
We hope this is helpful for now, Gillian - but please do call our support line for more dementia information.
Alzheimer's Society website team
Beatrice booth
saysMy hubbie has been diagnosed with...well "leaning toward" LATE by his radiologist. He is a Vietnam Vet and is currently on risperidone. His hippocampal horns are also badly effected as well median temporal lobes. What meds should he be on? As well as memory loss he has strong daily hallucinations of a family living "upstairs" with Mumma and Poppa, one adult child named Miriam and a young girl. They are always "there" no matter where he is living. Thank you from the bottom of my heart for your research. Would be interesting to know if other Vietnam vets are effected.
K
saysHi - trying to subscribe for updates but get a time out error. Can you pls fix and advise. Thanks
Anonymous
saysHello, K - please accept our apologies for the error. We have removed the link for the time being while we address this issue.
Thank you for letting us know.
Alzheimer's Society website team
Archana
saysFrom my mother's PET and symptoms, they are diagnosing her with what they suspect to be LATE. Are there meds to mitigate the symptoms, how does LATE progress?
Anonymous
saysHi Archana,
Thanks for your comment, and sorry to hear about your mother's diagnosis.
LATE dementia was only recently identified, so we are still learning about the condition and how it affects people. The symptoms associated with LATE are thought to be similar to Alzheimer’s disease, with memory problems being an initial sign.
At the moment, there are no LATE-specific medications to help symptoms. Some people with LATE can also show some of the brain changes associated with Alzheimer’s disease, which has some medications to help manage symptoms. However, because the causes of LATE are thought to be different to the causes of Alzheimer’s disease, it is unclear how effective these medications will be. We recommend discussing medications with your GP or dementia specialist.
We will continue to update our web pages with information on LATE as we learn more. We are currently funding a project investigating how common LATE dementia is and trying to understand more about what causes it. You can learn about that project here: https://www.alzheimers.org.uk/research/our-research/research-projects/u…
You can also call our Dementia Connect support line whenever you need information, advice and support. To speak with a dementia adviser, just call 0333 150 3456. You can find more information and opening hours here: https://www.alzheimers.org.uk/dementia-connect-support-line
Hope this is helpful, Archana.
Alzheimer's Society blog team
William E Rogerson
saysI am my wife's caregiver. She was first diagnosed with Alzheimer's About 2017 at the age of 87 years. She was reconfirmed by Monica K Crane (Knoxville) in 2017.She is now 92. I believe she has Late Alzheimer's TDR_ 43. If so should she be taking different meds. than Aricept &Namenda? Bill Rogerson
Penny M.
saysFascinating! My husband (well known to you) is nearly 90. He has 'defied' a diagnosis of Alzheimers since 2006 but changed radically at about 85. Recently a tentative but compelling diagnosis of 'with Lewy Body Dementia' has been added. P. has always been atypical - even now with the Lewy Body addition. Could it have been LATE? He is a signed up future Brain Bank donor. I hope 'his' researchers will be looking out for LATE markers in his brain. Then the many questions his diagnosis has raised might be answered and some of our pain might have been worthwhile.
John Davies
saysHaving h d a brain scan on my wife's head in discussions with a neurologist he pointed out that whilst she had no evidence of Amyeloid plaque build-up or tau tangles her brain shape was in all other respects similar to that of a person with Alzheimer's disease .
I then found out about Research at the University of Kentucky in the USA which was published in the journal Brian in April of last year. The author of the paper Dr Peter Nelson stated recently "This is a massively underappreciated and understudied disease(s)— TDP-43 proteinopathy (with or without comorbid AD pathology) is strongly associated with cognitive impairment, although, for a gradually progressive disease that affects >85-year-olds preferentially, a lot of persons die in a presumed preclinical state".
There seems to be a lot of research going on inot this condition although NHS Psychiatrists seem blissfully unaware ofits existence as a separate condition form AD.
EM Brown
saysMy soon to be 85 year old mother seems to be suffering with dementia or something that mimics similar symptoms -- perhaps like late-onset bi polar disorder? She refuses to be evaluated by a physician. All her life she has had solid memory recall and social interaction. Now, she exists in a partial dreamworld; resistant to every day reality. I've wondered whether this could be some severe type of depression, as she certainly appears to be in some depressed state which has suddenly tied her to a past of her own making. Our family is trying to cope but without her own recognition of the problem and her persistent personal isolation, we are struggling every day.
Anonymous
saysHello there
Thank you for getting in touch. We're very sorry to learn about the struggles you and your family are facing with your mother at the moment.
Our National Dementia Helpline advisers are available seven days a week on 0300 222 11 22 if you are looking for information about dementia and its symptoms, or any other support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Additionally, you may benefit from joining our online community, Dementia Talking Point, where people affected by dementia can share their experiences. Find out more here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
In the meantime, you may find this information on apathy, depression and anxiety, and how these psychological conditions relate to people with dementia: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/apa…
This information is also available as a free, downloadable resource: https://www.alzheimers.org.uk/media/931
We hope this helps.
-
Alzheimer's Society blog team
MARGARET WHYTE
saysI have learned more about dementia and am now more aware of how it can have an impact on someone's life.
Howard Cooley
saysThank you. I so admire the intelligence and dedication of doctors and scientists who are struggling to find a cure for Alzheimer's. Humanity suffers. It was ever thus. Let us all hope that mankind will eventually understand its position and nurture the goodness in the human heart.