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Five things you may not know about frontotemporal dementia
In awareness-raising messages about dementia, the spotlight typically rests on Alzheimer’s disease as the most common cause of dementia, helping people to learn more about the condition and working to break down the stigma that surrounds it.
However, at Alzheimer’s Research UK, you’ll often see “the power to defeat dementia” next to our logo because our research focuses on all forms of dementia. So on our website you’ll find out about some of the lesser known causes of dementia, and also see what research efforts we’re funding to tackle each of them.
Frontotemporal dementia (FTD) is one of these lesser known, but equally devastating, forms of dementia, and it affects tens of thousands of people in the UK. This week is World Frontotemporal Dementia Awareness Week and we are doing our bit by discussing the five main things you may not know about FTD.
1. The complexity of FTD amplifies the challenges faced by researchers fighting the disease.
In Alzheimer’s disease, two proteins – amyloid and tau – are responsible for the nerve cell damage that causes the recognisable symptoms. However, unlike Alzheimer’s disease, the proteins that cause nerve cell damage in FTD are not the same for all people with the disease; there are different toxic proteins that cause damage in different parts of the brain. This complexity makes drug-discovery efforts to halt damage more challenging, as one drug may not work for all forms of the disease.
2. As well as presenting challenges for drug discovery research, the many forms of FTD that affect different brain areas can result in widely varying symptoms.
You may associate symptoms such as memory loss and confusion with dementia, however people with FTD more commonly experience changes in personality and behaviour, a lack of empathy and social awareness, as well as difficulties with language.
In another challenge to popular understanding, did you know that FTD can also result in changes in food preferences, the developing of interesting obsessions (see below), and even alter a person’s sense of humour – shown by research we helped to fund.
3. People with FTD may develop curious obsessions.
One of the key symptoms often seen in FTD is changes in personality and behaviour. This can be an aspect of the condition that is particularly upsetting for those around the person with FTD, as it is difficult to understand why the person you know so well is acting so differently.
These changes can also bring about new ‘obsessions’ including: hoarding, refusing to throw anything away; fiddling and touching everything around – a symptom called utilisation behaviour; and disinhibition, which can take many forms but commonly includes a loss of social graces. You can find an ‘A-Z of FTD obsessions’ on the Rare Dementia Support Group website, www.raredementiasupport.org/ftd/what-is-ftd/a-z-of-picks-ftld-obsessions.
4. Risk factors for FTD are not yet fully understood, but research is underway to find out more.
The discussion of risk factors for dementia is always a popular topic, with ‘Reducing your risk of dementia’ being one of the most sought-after booklets we produce. Current research shows that the best way we might reduce our risk is to stay mentally and physically active. But although this is good advice for the most common forms of dementia – Alzheimer’s and vascular – there are currently no known risk factors for frontotemporal dementia.
However, in some cases of FTD, genetics does play a role. Around a third to half of people with behavioural variant FTD have family history of the condition and around 10% of cases of FTD are known to be caused by a faulty gene that’s directly passed down in families. However, for the remaining cases, the search for clear risk factors continues.
5. FTD is the most common cause of dementia in people under the age of 50.
It is a common misconception that dementia is a condition exclusively of old age. Although we know that this is not true for dementia in general, it is particularly pertinent to FTD, as the disease tends to affect people at a younger age, and it is the most common cause of dementia in people under 50.
This, among other factors, may contribute to difficulties with receiving a diagnosis. On average, people with FTD can wait up to five years for an accurate diagnosis, and reports suggest that almost three quarters of people are initially misdiagnosed.
Alzheimer’s Research UK is striving to support research into FTD, and to date we have funded over £12.5m of research into the disease. This includes a £305,000 drug discovery project, funded by the Dementia Consortium – a unique partnership between Alzheimer’s Research UK, MRC Technology and five pharmaceutical companies.
We are also helping to support the Rare Dementia Support Groups, a specialist service that allows more opportunities for people affected by rare dementias to engage in research and access support. You can find out more about the Rare Dementia Support Groups on their website, www.raredementiasupport.org.
- With your help we have already funded more than £12.5m into FTD, donate to help us fund more research.
- Find out more about the frontotemporal dementia support group and support networks in your area.
- Sign up to take part in research.
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Claire Lucas
Team: Information services
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My memory has bn bad for some time now and concentration too. I’m not rember if conversations or arrangements- the GP says I can’t be seen by nhs until I’m 65 and the memory clinic can’t as I don’t have a buddy as they all work.
Hi Jeanette,
I am sorry to hear that you have concerns about your memory and thinking skills. A doctor is the best person to talk to about your concerns as they will be able to rule out any other possible causes of memory and thinking problems. Having done this, they may then conduct some memory and cognitive tests, or refer you on to specialist, which should not depend on your age. You can read more about how a diagnosis is made on our website https://alzheimersresearchuk.org/about-dementia/helpful-information/getting-diagnosed/, and also the contact details for organisations that may be able to help https://alzheimersresearchuk.org/about-dementia/helpful-information.
If you have any further questions, please do contact our Dementia Research Infoline on infoline@alzheimersresearchuk.org
Kind regards
Dementia Research Infoline team
I have ftd.
How are you doing Charlene?
Can non verbal patients sometime say words or names even though they have FOB dementia. Sounding a caution or saying friends names even though the haven’t spoke in u drstandsble words in years
Could people with FTD hear us us or understand us but can’t communicate with us at all. They mumble but could there brain hear us tho
I have worked in a flag ship Dementia Home for many years, please don’t be fooled into thinking that someone isn’t hearing you. Quite often elements of your conversation are being collated and stored. Hours after visitors have left we often get to pick up the pieces when residents start to unwind and piece together some of the fragments of conversations that took place and the perceived implications.
Hi Lauren
My wife had FTD and I was convinced that she was able to hear what was being said to her. I also think that she understood things to a reasonable degree until a few days before her death. It’s almost like locked in syndrome.
Kind regards
John
I completely agree john
All Dementia decreases are horrific. My 64 year old brorther has PCA Dementia. Please could we have more insight to this type too .
As above
My mum passed away at 60 years old – the official diagnosis was ftp vascular dementia she started with this at around 50 and was not diagnosed till about 53, she lost her speech rapidly which was horrifying as she was always very talkative, I continued to talk to her and tell her what was going on in the hope that she understood at least a little …
We could find no explanation as to what had caused this ( and her mother Lived to be 90) I support this cause to try and prevent further heartache for other family’s
My mum has missed so much as have we
My wife was diagnosed with this in 2008 aged 58. She has got very slowly worse over 9+ years. I am a professional scientist, not a medic, but the symptoms are so broad and variable that to label everyone as “FTD” seems too broad a category to be useful. We must at the very early stages of understanding, which is both disappointing and unhelpful to me personally.
I don’t have a reply but my husband was diagnosed with ftd last year. I would love to talk to someone who had gone through or going through this horrible disease.
I just want to talk to someone to my husband was. Diagones may 2018 FTD.
I feel very alone and sad and angry
Hi Christine,
So sorry to hear about your husband. We understand how difficult it can be to adjust to life after a loved one is diagnosed. There is another charity called Alzheimer’s Society. Their focus is very much on the care of people with dementia, providing information and services including respite care and support. We recommend that you contact them on 0300 222 1122 or email enquiries@alzheimers.org.uk. They might also be able to put you in touch with support groups for people going through the same as you. If you have general questions about dementia or want to know more about dementia research and how you and your loved ones can get involved, our Dementia Research Infoline can help. Just call us on 0300 111 5 111 where someone from the team would be happy to help.
Hi Christine my husband was diagnosed in 2016 but I knew something was different 2 yrs prior! You have to take it one day at a time and find humor in this horrible disease. If u need to talk u ca message me.
My husband was diagnosed around nine months ago.
With frontal lobe.
There dosent seem to be answers to so many questions about it
If you want I can tell you how my experiences compare .
And if that helps I’m more than happy too
I never wake up on a morning now and ever look forward to a day
And there’s fear guilt anger all mixed up.
I feel I’m on a boat in the middle of the sea where I’ll never be rescued.
My heart goes out to you. Truly.
My mother was diagnosed 2014 with ftd now she is bead ridden .
I took care of my mother diagonsed in 2012 died August 2017, not trying to be a downer, but I was a care taker and daughter, it was one of the hardest things I have gone through, and one of the most miserable things I could imagine a person going through.
My mum was diagnosed FTP language variant 5 years ago and I’ve looked after mum full time for 3 years now. I love you mum, you are my inspiration, you are strong and brave and you try soo hard to get me to understand what you are trying to say.
Does anyone have experience of achieving NHS Continuing Healthcare? We are about to start this process and would appreciate any insights specifically with FTP language variant. Many thanks
Hi Jane.
I know it has been some time since you wrote your comment and I hope all is OK. My Dad is suffering from language variant (diagnosed 5 years ago) and is now in full time residential care with some nursing needs. This last 12 months has brought on quite a quick decline 🙁
Also looking into CHC Funding but it seems that nobody believes he will qualify, the home doesn’t have enough ‘evidence’ to support etc. How did you get on with CHC funding?
I have been diagnosed with FTD. I am 66. I think I have had it building up for at least 8 years. My speech is affected when I am trying to think about what I am saying, but at other times I can chat away easily.
I feel abandoned, angry and so frustrated. I think about taking my life when it gets worse. I have nursed many patients with dementia and cannot bear to think of being lost in my own world at the end.
I didn’t know about frontotemporal dementia. I only knew about dementia and glad to know more about such a disease. Such disease may not be fatal but could have a significant negative influence of the lifestyle of the patient. Ignoring such symptoms could have a catastrophic result. With proper medication, one could minimize the damaging effects of such disease. Apart from this, some people think that symptoms of dementia is the characteristics of aging. So, one should be very careful and the symptoms related to such disease shouldn’t be ignored and proper treatment should be provided to the patient.
I’m pretty sure my mom has this, but she insists she’s fine and swears that nothing’s wrong with her. She used to be a very caring, empathetic, nonjudgmental woman. Now she judges and criticizes everyone (including people she claims to love), she has zero empathy for anyone, she cusses like a sailor (something she never used to do), she becomes angry and argumentative if you disagree with her on anything, she feels like she’s above the rules and has zero respect for anyone else’s boundaries, etc.
She also has trouble remembering words sometimes and many of her stories that I’ve been hearing since I was a child are suddenly changing. She enhances them to make them worse than they were or completely obscures the facts in them altogether. If I try to correct her, she lashes out at me. She feels like she’s never wrong, will never apologize, and expects everyone else to bow down to what she wants. This isn’t the woman I grew up with and many people in the family think she has dementia. She refuses to get checked, insisting that the problems lie with everyone else and not herself.
I’m not sure what to do at this point. She’s very difficult to be around for any extended period of time and she’s spiraling into depression, mentioning suicide almost every time I talk to her. Many times I leave her house either in tears because she’s berated me so much, or just simply irritated and wound up because her personality is so harsh and unpredictable. She wants me to come around more, but it’s hard when she yells and cusses at me for the tiniest of things and talks about killing herself all the time. She won’t seek help and I don’t know what to do. It’s so hard.
My husband was diagnosed around nine months ago.
With frontal lobe.
There dosent seem to be answers to so many questions about it
If you want I can tell you how my experiences compare .
And if that helps I’m more than happy too
I never wake up on a morning now and ever look forward to a day
And there’s fear guilt anger all mixed up.
I feel I’m on a boat in the middle of the sea where I’ll never be rescued.
My heart goes out to you. Truly.
I lost my brother in a four month span with severe cognitive decline. First three months without a diagnosis. The many disciplines treated symptoms but did not know if it was psychosis or dementia. Due to Medicare reimbursement a Pet scan was only allowed as an outpatient. He was so severely agitated and unable to sleep, came in walking talking and manic. Quickly after being treated with antipsychotics , anticholinergics, benzodiazepines he crashed. Now unable to swallow, incontinent and severe difficulty thinking or walking. He remained hospitalized and isolated due to restricted visiting hours in a psychiatric unit primarily. Finally sent to nursing home where I had to fight tooth and nail to get his pet scan . Then diagnosed with classic Alzheimer’s . He was independent four months earlier. He seemed to get manic from Requip he was prescribed for a hand tremor thought to be Parkinson’s.That was for the month prior to admit to Psych ward. He had his own apartment , car and able to get out and stay independent until then. Heartbreaking to watch his brain die but by bit and at a very rapid pace. I wish I could make sense of it. From beginning to end he was failed. He died in two days from aspiration from tube-feed. The tube was placed three weeks into his admission. He forgot how to swallow week three. Never are real food again.