Mark and Caroline sitting at home

How my husband was diagnosed with Frontotemporal Dementia at 42

Mark Preston was in his forties when he was diagnosed with a rare form of dementia. His wife Caroline, with whom he has a three-year-old son, shares their powerful story.

If I was walking with somebody old, people wouldn't think twice if they behaved like Mark does. They'd say, “Oh, they're old, they probably have dementia”.

But my husband has dementia, and it's the rare kind. It's Frontotemporal Dementia (FTD), and he was diagnosed at the age of 42.

One of the most challenging parts for us is that the community don't understand. 

There's a huge misconception that dementia is all about memory loss and it only happens to old people.

We made the vows 'in sickness and in health' when we got married, and that's what I'm trying to do.

I always feel like I'm explaining or apologising for Mark. FTD affects someone's behaviour and their emotions, and not so much the memory.

People just don’t know about this. For example, if we're in a restaurant, Mark will take food from someone's plate and think nothing of it. 

Picking up on personality changes

Mark was diagnosed in 2021, but I think I can trace it back to around 2018.

His personality change…it was subtle. If we'd gone to a GP, they wouldn't have believed it.

I first noticed some strange behaviours, like Mark waking in the night and banging clothes hangers together, or completely forgetting how to load a dishwasher.

Mark and Caroline in their wedding outfits

Mark and Caroline on their wedding day

At work he was becoming really disorganised, which was unlike him.

Mark was one of the most generous people I knew. But he'd stopped being generous and stopped thinking about other people.

He became more selfish, and he was getting more muddled. He’d repeat his conversations

When Mark's grandma died, he wasn't upset at all, and they'd been really close. So, with all of this in mind, I tried to get help. But then Covid hit.

Caroline and Mark with son William

Caroline and Mark with their son William

Getting someone to listen

I tried to get the doctors to see Mark, but nobody would talk to me. Being so young neither of us had even discussed getting Power of Attorney.

He did eventually speak to three separate counsellors but, because of the Covid restrictions, these were still over the phone.

The three counsellors all concluded that he was just missing the routine of work. But I knew they were wrong.

I felt like nobody would listen to me.

We finally got a GP appointment, but only because I made it for myself. Despite my frustration, I began to feel heard, and the GP met with us every four weeks. 

Help and hope

I asked the GP to please test his memory. Of course, he passed with flying colours because FTD doesn't affect the memory like other dementias.

Without Power of Attorney, I couldn't speak for him or book any therapy through the NHS. 

We got the opportunity to meet with a CPN (Community Psychiatric Nurse). She came for two hours and observed Mark. She told us to go to A&E immediately.

Mark and Caroline look at a book of photos

Caroline and Mark look at a memory book

Finally getting a diagnosis

We were supposed to have a CT scan and we waited 13 hours. For somebody with FTD, this was unbearable. 

The results led to Mark being admitted for two weeks in the neurology department at the hospital.

Finally, he got his diagnosis of Frontotemporal Dementia (FTD) in August 2021.

Now I have to think about the family and what Mark would have wanted as a parent.

Support and the Society

I'm very lucky to have such brilliant friends and family. I have a big network of support.

I also found a lot of support and information from leaflets and brochures from Alzheimer’s Society.

I use the website to inform myself of his rights and the support that we can get. 

Mark’s carer takes him to Alzheimer’s Society’s Singing for the Brain every week and he really enjoys that. 

I know that he'd be proud of what I've achieved for him. He can't say it, but I know him and I can feel he's proud.

I can't change his diagnosis. There's no magic wand.

The way I see things is that there are some things in our life that are out of our control. And the things I can change…well, I focus on those.

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My husband started having muscle fasciculations in 2019 and that started our journey. He worked 10-15hr days and never noticed the memory issues until he was diagnosed with a seizure disorder, stopped working in 2020 at the age of 45. He is now 48 with tremors, catatonic seizures, unsteady gait, no short term memory, long term memory impairment, heart rate issues which leads to passing out, can not draw a clock or tell time, has to push on his bladder to urinate & now forgetting who people are. Because of his age it’s close to impossible to get anyone to give a firm diagnosis. Last Neuropsych test points to FTD with early Parkinson’s. I finally got him into Baylor Institute this October with another neurologist who happens to be a Dementia specialist as NO Dementia Dr would see him because he is under 55. We have had so many diagnoses from ALS to LBD. I am hopeful we can get some answers with Baylor. He is currently on Zoloft, Kepra, Valium, Quetiapine, and Gabapentin but NO Dementia meds. He is the strongest man I know, talks to my mother daily who passed away in 2017 from Dementia which gives me comfort.
My husband was dx 2 years ago but had problems a couple years before. I thought it was because he had retired and over 65. He saw a good neurologist who said his brain had shrunk but hubby didn't like him being so serious. Now he won't see a doctor or even take pills for blood pressure etc. He sleeps a little but sits up v ery tired. I have no friends or family or help. Anxiety keeps me up till 4 am and took over house, bills etc. last year. I want to sell house and rent a condo to eliminate repairs and yard.
I feel so much for all these people as it reminds me of my struggle to get a proper diagnosis for my husband. He lost his speech & was diagnosed with aphasia by neurologist. Then when the personality changes became more apparent I asked his GP repeatedly for a referral back to neurologist. Instead they sent him to the memory clinic where a dementia inures decided ‘it must be Alzheimer’s’ and put him on medication which was totally unsuitable. To cut a long story short and after admission to hospital (unrelated) he was scanned & diagnosed with Parkinson’s & dementia which I believe to this day was FTD Primary Progressive Aphasia. He was one of the unfortunate ones who was thrown out of hospital into home with no notice during during the Covid outbreak. He caught Covid and died.hence I feel very strongly about patients getting the correct diagnosis & have written to my MP to say so.
Hi guys, my diagnosis came a few years ago when that same angel whispered frontotemporal dementia in my ear. BUT… we are what we are and being blessed with this is certainly not the end of life by a long way.. yes it’s a different life but I get huge rewards by going into schools and colleges with Sally from Bristol dementia wellbeing and chatting to children and some medical students about what it’s actually like to journey with this thing.. I picked up a ukulele and learnt a few chords which showed both them and me that there are still learning capabilities despite the loss of other areas of capacity… blessings to you for your endeavour and perseverance we need more of this to get the word out there, not maybe for us but for the future Marks and Johns who get that whisper?
Hi everyone I'm so sorry to read about these struggles. I send my thoughts and prayers to you all and your loved ones. My Mum is 64 and has been showing signs of dementia for around 3 years now. Things have been getting progressively worse. She has been to the memory clinic twice now but because she is scoring above a certain threshold a consultant doesn't see the need to see her. So she is sent home and all the while her symptoms just worsen. She has a deep anxiety about other issued which the medical professionals seem to think is the bigger issue but in our hearts we know this is most likely not the case. With everyday that passes it feels like we lose a bit more of our Mum and I have never felt more powerless to help someone in my life. I have arranged counselling, CBT, reflexology, been the contact for the GP and then the messenger for the family to relay all the advice. However Mum remains stuck. Whilst she is aware her memory is failing, she is petrified of the idea that she might have dementia so will present the best version of events when asked. She won't engage in counselling in order to help her anxiety as she is the type of person who views the need to attend counselling as a weakness. I am really desperate to get her help but I don't know where to turn anymore and losing all hope of any brightness left in her future as my fear is that by the time we get her the help she needs any form of medication or specialist support she could have had will be useless as the disease will have progressed too far. I would so appreciate any advice.

Hi Pippa,

We're very sorry to hear about your mum, that sounds like such a difficult situation to be in. Please know that we are here for you.

We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers.

They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours and other methods of contact) here:

We hope this helps for now, Pippa. Please do call our support line.

Alzheimer's Society website team

My husband has aphasia ftd. Doctors said no not Phil when I tried to get him tested. Of course he had to agree. He finally did agree. He was diagnosed with the above. Mainly it was his speech and was still allowed to drive. This friends couldn't understand. I pointed out I would never sit with anyone who was a danger on the roads. He dresses himself, choosing his own clothes. Does his own ablutions and shaves. His speech getting worse and if it's not one of the tales he likes to tell, which have now become incomprehensible and I do not know what he is trying to tell me. His mood swings are worse, understandably and has now on occasion starting to do odd things. Ok took him along to music for the brain, he found it childish and after 3 visits is refusing to go. Iam going to ask for him to be reassessed. My biggest concern is how do we communicate? cannot write,.or use his computer.
High my name is Trish was diagnosed at 63 years.with younger onset dementia,it's been a few years now but I still struggle with the diagnosis,I have made an appointment to see a new Geriatrician as I found the first,no so caring ,just after diagnosis he took of to America.away 12 months,came back seen him had no more information about what he learnt on his holiday.Csught up with family,working holiday.Dosent help me.Trish.

Hi Trish,

We're sorry to hear this. Please know that you aren't alone and we're here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours and other methods of contact) here:

We hope this helps for now, Trish.

Alzheimer's Society website team

I am moved to read these stories, I have felt the same for a long time. My Wife Gill has dementia but it doesn't feel like the same as anyone else. In a strange way it is comforting to know that other carers are struggling to find someone to talk to is very crucial. praying for Gods Grace for you all.
I really feel for you but admire you having a child so young as well. It's a dreadful invisible illness my husband of 74 has just been diagnosed he looks fine but outbursts of shouting and swearing in frustrating situations has me walking on eggshells. I am disabled myself but struggling to keep up with everyday life especially as he doesn't accept that anything is wrong
It's breaks my heart reading your stories, my husband was diagnosed with Alzheimer/ mixed dementia FTD in 2012 at 70 , he is now in a nursing home, I visit twice a week now. As it's just too hard to see him, lost his speech from 2015 , it's been over a year since his eyes has been shut and that's the part that I find so difficult to take, I just pray for everyone with this decease and hope one day there will be a cure. God bless everyone
My thoughts & prayers are with you both. It is very hard & your son so young. My husband was diagnosed in 2016. He doesn't know me but we are still together & making the most of our situation. Good luck.
I completely understand as my husband showed signs before he was 50 but I didn't realise or know that it was in the family genes. He is now 76 and I am caring for him at home with the help of carers. I have a sitter who comes once a week for 3 hours in order to let me out and get essentials which is insufficient but the social care workers don't appear to care and whenever I ask for more help I am refused. I am suffering from osteoarthritis but that doesn't appear to matter or taken into consideration. I have asked for respite, however, unless I'm suicidal it's not possible. What a caring system!

Hello Oli

We're sorry to hear about your husband, it sounds like a very difficult situation for you both. Please know we're here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you, find out more about your situation and provide relevant advice and support. You can find more details about the support line (including opening hours and other methods of contact) here:

We hope that helps for now, Oli.

Alzheimer's Society web team

Have you applied for attendance allowance and also council tax relief ?? It can be used to pay for other carers to come sot with them whilst you go out or for other help like a cleaner or a gardener etc ?
You're right Tony! A lot of people don't know about Attendance Allowance but it's very important. I get almost £100a week, non-taxable, which makes all the difference to me. The application form looks daunting but most of it won't apply So go for it, everybody!.
My husband is 86 and has mixed dementia. I strive to keep him at home with no support . I’m on dyalysis four times a week. I get up at three o’clock to make sure everything is left and organised for him. I’m constantly tired. No help was available from social services who told me no care packages are available. I feel very locked in and lonely

Hello Eileen

We're sorry to hear about your husband, it sounds like a very difficult situation. Please know that you're not alone in this and that we're here for you.

We'd recommend calling our support line on 0333 150 3456, where you can speak with one of our trained dementia advisers. They will listen to you and can provide advice and support that's relevant to your situation. You can find more details about the support line (including opening hours and other methods of contact) here:

We hope this helps for now, Eileen.

Alzheimer's Society web team

Understand your pain. My wife was diagnosed with Dementia 4 years ago. I contacted the memory clinic regarding a wheelchair as she cannot get about easily due to Osteoporosis and other problems. Promised a call from a colleague 4 days ago but nothing as yet. Looking on eBay to see if I can buy one. The memory clinic when they called at our house about 4 weeks ago to see how things were said to contact them if we needed a wheelchair, they have still not replied to my call 4 days ago. ☹️☹️☹️
Thank you Caroline for sharing your sad story with us. I sit here crying reading your sad story.I know what you are going through, my wife has Alzheimer’s and doesn’t know me or my son very well now, it’s heartbreaking. I wish you all the best.