Jess and her mum Janice HERO

Me, my mum and frontotemporal dementia

When Jess’s mum, Janice, was diagnosed with frontotemporal dementia (FTD), Jess struggled to find more information about the disease. Having found support through Alzheimer's Society and others, she hopes her personal story about FTD can help people in her position.

My name is Jess. I’m 28 years old and live with my husband, Gregg, and I have two lovely step-kids aged 11 and 12.

We have a very large family, good jobs and a whole bunch of funny, talented and caring friends. All in all, I love my life and can’t complain.

But life isn't perfect. Last year my mum was diagnosed with a form of dementia called frontotemporal dementia, also known as FTD. She was just 62 years-old.

Jess and her mum Janice 2

Jess with her mum, Janice

Understanding FTD

The main problem I’ve faced is that there isn’t a great deal of resources available specifically about FTD and I’ve found it difficult to speak to people in a similar situation to mum and me.

FTD causes problems with behaviour and language and affects the front and sides of the brain (the frontal and temporal lobes). 

'My mum was only 62 when she received her diagnosis, though her symptoms started much earlier.'

By the time she received her diagnosis (it was a very lengthy process), she was already pretty advanced.

The diagnosis didn’t come as a shock to me. My friends and colleagues always joke that I should join the FBI due to my research skills and in this situation, my skills shone through. 

The one thing the diagnosis did provide me with, however, was relief. I was utterly convinced for so long that mum was living with FTD, even when others doubted me.

We finally had an FTD diagnosis, a reason behind my mum’s concerning behaviour and something for me to focus on. 

I struggled to find online support. Why did mum have different symptoms to everyone else, such as losing the ability to talk? I didn't have a clue what I was doing, I felt truly alone. Although I had family around me, they were also struggling. 

Jess and her mum Janice 3

Janice was diagnosed with frontotemporal dementia aged 62

Finding support for mum's FTD

This all changed when I came across an interview on This Morning with a woman, Hannah, who was raising awareness of FTD after her father had been diagnosed

It was such a sad story, but it was also the first time I felt I could reach out to someone who would understand. I messaged Hannah on Facebook asking for help.

To my surprise, she replied with the best response ever. She gave me guidance, she provided me with useful resources, but most importantly, she understood. She could relate with me and knew exactly what I was going through. 

'I’ve also received huge support from Alzheimer's Society, and I’ve been given all the support and advice I need.'

At one point, I turned up to a local Alzheimer’s Society office in floods of tears just looking for someone to speak to. One of the dementia advisers invited me in for a cup of tea and provided me with reassurance and support. I’ll never forget that.

Our dementia advisers are here for you.

Helping others affected by FTD

After speaking to Hannah, I decided to start my own blog about mine and mum’s FTD journey. Since the diagnosis, I’ve found out that mum’s FTD is a genetic condition and there’s a 50/50 chance I’ll also get the disease.

I decided a blog would probably achieve two things; the first being therapy for me, and the second being a place where people could visit, relate and understand FTD.

'In my blog, I’m completely honest.'

I go into every bit of detail including when I started spotting changes in mum and the process of getting her diagnosis. 

Mum is really advanced now and the journey my family has been on so far hasn’t been easy. I'm in a situation currently where I’m grieving for my mum, even though she’s still alive

Jess and her mum Janice 4

Jess hopes her blog will help others affected by dementia

Mum doesn't speak anymore, and I don’t think she even knows who I am. Her progression has been incredibly quick. Her level of care required now is huge but despite all of this, I do still manage to enjoy my time with her.

I have found myself feeling incredibly anxious and I feel so much better after putting my feelings into words. My blog is like my therapy and I’m taking others on this journey with me and hopefully helping them along their way too.

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30 comments

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If you are Carer for a family member & are on UC, Claim Carers Allowance on the Gov.uk website for financial help & support.
While you are a Carer the Jobcentre wont need to see you or force you to find work, so you.ll have more time with your Loved One ♥️
Get all the help & support you can, god knows, Carers need it !!!

Hi im Roni, im 46 & my mom was diagnosed at 60 with FTD but had Depression most of her Life. She Passed aged 70. We looked after her at home with the help of increased Carers over the years. She was Bedridden 6mths after her diagnoses & id take her out in a wheelchair once or twice a week.
Ive requested an MRI scan to see if i have this Disease, as its a 50/50 chance i have, so i can plan my future & express my Wishes to my Children & Partner.
I know how Hard & Long winded the process can be to get Diagnosed so im fighting to be heard although im 46.
If you can, get a Blood Sample from your Loved ones, GET IT before its too late !! That makes it alot easier for you to be diagnosed otherwise it can only be spotted with an MRI .. always follow your Heart & Instinks, if you think you may have it, fight for a Diagnoses !! I want to know Asap so that i can plan ahead my final years & to spare my children the Hurt i experienced watching my Mom deteriorate.
Has anyone else experienced chronic fatigue in their Loved One?
Sleeping most of the time, and only staying awake for an hr or 2 at a time ??
Ive just been diagnosed with CFS/ME, chronic fatigue syndrome & my mom with FTD also had chronic fatigue, so im very mindful of CFS being confused with FTD & want an MRI scan asap.

Hi Roni, thanks for getting in touch.

If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss this further. They will be best placed to provide you with dementia information and support relevant to you. Please call our Dementia Connect support line on 0333 150 3456. More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line

It sounds like you might also benefit from joining our online community, Talking Point, where people affected by dementia can share their experiences. You can browse the conversations within the community or sign up for free here: https://forum.alzheimers.org.uk

If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline

Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs

We hope this helps for now.

Alzheimer's Society blog team

My mum has just been diagnosed with ftd at just 62 like you I noticed before and have fought hard for a diagnosis I’m completely broken my grandma also had dementia but not ftd she had vascular and we lost her in 2018 I’m still grieving for my grandma and now started grieving for my mum although she is still here sending you my love ❤️

My mam was just diagnosed with FTD yesterday.. I am totally floored, we knew something was wrong, suspected alzheimer's.. wasnt quite prepared for this though.. I feel like I am already grieving.. but cant tell anyone as I have to be strong.. to know I may have also passed this to my son is breaking my heart.. the pain is all consuming at the minute..

Hi Nicola,

We're really sorry to hear about your mam's recent diagnosis. This must be such an emotional time for you. Please know that support is available and we are here for you and your family.

You may find it helpful to talk to one of our Dementia Advisers for information, advice and support. You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line

We also have a practical guide for carers, which you may find helpful: https://www.alzheimers.org.uk/get-support/publications-factsheets/carin…

You might like to talk with other people affected by dementia within our online community, Talking Point. You're free to browse and read others' experiences, or you can create an account to reply and connect with others: https://forum.alzheimers.org.uk/

I hope this is helpful, Nicola. Please do call the support line if you need us.

Alzheimer's Society blog team

Hi Jess. I’m 17 and have just found out my dad who is 50 has been diagnosed with FTD, I don’t know what to do and who to talk to and I’m just scared. It’s just unfair for him to be so young aswell. Also scared that there’s a 50/50 chance of inheriting it myself with my 2 siblings too. Any advice would be great. X

Hi Rubi,

Thanks for your comment. We're really sorry to hear about your dad's recent FTD diagnosis. This must be such a scary time for you, your dad and the rest of your family.

If you need someone to talk to, please call our Dementia Connect support line on 0333 150 3456. Our dementia advisers are here to listen when you need them. They can answer your questions, give you dementia information and advice, and provide emotional support. More about our support line: https://www.alzheimers.org.uk/dementia-connect-support-line

You may find it helps to talk with other people who have gone through or are going through similar experiences. Visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free, and open day or night.

In the meantime, you can order or download The dementia guide, which is useful for people affected by dementia that have recently received a diagnosis: https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-…

We hope this is helpful, Rubi. Please do give us a ring if you need someone to talk to.

Alzheimer's Society blog team

My 68 yr old husband of 44 years also has FTD. type dementia, though his brain scans were inconclusive .He was finally diagnosed 3 years ago, but there had been many signs long before that. He is such a lovely man, and so articulate, but now he can hardly speak, and his agitation means that many care homes can’t “cater for his needs.” At present he is in an assessment unit in hospital. I dearly would like to care for him at home, but it has now gone past that stage, and that makes for feelings of guilt. A horrible disease in someone who never had a day’s illness in his life. Many people, I think, think of dementia as loss of memory, but some of the rarer ones are far more cruel.

Morning all,
Carers of people with FTD may find these short film clips useful. They were put together by Stockport Older People Mental Health Team and FTD carer group earlier this year.
www.penninecare.nhs.uk/infoforcarers

Hi from the other side of the world NZ. I to have found it difficult grieving for someone who is still part of you. I think lack of communication is the hardest to bear. I am lucky that my wife of 54 Years is still able to go walking and appreciate the beautiful things around her. Keep positive and live for each day

My mum had FTD started when she was 60, passed at 72. It was heart breaking not being able for her to talk back. It's worrying that a couple of ppl have said it's generic 50/50 who has told you this? Heart goes out to you xx

Hi Julie,
Although this may sadly be the case for some people, it's not true in all cases of FTD.
We have more information on our page, 'Is dementia hereditary?' which you may find helpful:
https://www.alzheimers.org.uk/about-dementia/risk-factors-and-preventio…
If you're all worried or would like to speak to somebody, our Dementia Connect support line can give information, advice and support. More details (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
Alzheimer's Society blog team

Hi,
I can feel your pain. Recently my mother diagnosed with Alzheimer’s and it shattered the whole family. Being from a small village in India, it is more difficult . People ridicule. They think it is some kind of black magic. She is also around 65. The best moments of the past with her hurt us a lot. I wish there was a medicine for Dementia.

Hi ime in a simular position as you. My wife, Also Janice was diagnosed with FTD 4 years ago but as you we suspected all wasn't well for a couple of years before. She was treated for anxiety for 3 years prior to that. I can understand totally how you feel because all you want to do is help her and love and hold her but now my wife can't understand my reasons. She has cared for the public a large part of adult life but this horrible illness has taken her away from me. Like you my wife has reac a terrible stager of her illness and it really does drain you in body and mind. One thing is sure though with lots of help from our brilliant families and friends I can give my wife all I have. Its going to be very hard but ill get there and so will you. God bless

im so sorry to hear about your mum it's a horrible disease and one that some times we don't understand my dad had dementia it came on so quick and its so hard for the family take care

Ive been in exactly the same position as you.. My m was also diagnosed with FTD at 62 but had showed signs for a few years before. Its an incredibly painful experience. During the past year my Dad who was her carer was diagnosed with lung cancer and died 9 months later. So I totally understand your grief, I grieve for one parent living the other who died... Both aged 65. We need more research into FTD and available resources. I wish you well and thank you for your blog.

Very touching story and with many similarities to mine and my mum's......
I live in Greece but technology can bring us closer....
I'd like to share my experience with you....
God bless you!

My mum was in her late 50s when diagnosed, what a shock as it was treated as depression for years.

Exact same thing happened to my mom.. she was diagnosed in her late 50s and for 2 years she was treated for depression until we found out what she had. She's still in the beginning stages. Having trouble speaking and expressing her thoughts. She's not able to organise herself and feels uncomfortable when there are too many people around.
Trying to find ways to make it easier for her and to slow down the process ie: mind games, colouring..

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