[Closed] Early onset dementia - talk to me

Sorry to hear your news. Dementia is bad enough at the end of a long life well lived, but being cut short can only make it worse.

Best alternative is a heart attack or similar to get it over with a bit quicker.

I’m really sorry to hear that. My dad had dementia which started to become apparent in his late 60s, which is relatively early. There are no effective treatments, because dementia research has been really poorly funded and charities lose out to more popular causes. It’s been suggested that keeping active, maintaining  a social life, music, singing etc can help.

The Alzheimers Society website is very good and there is a helpline to call if you want to speak to someone. My mum and I used the helpline a few times and it was very good.

Sorry to hear that. My gran and my grandad, one from each side of my family, both ultimately suffered from this later in their lives and indeed it seems there is no effective treatment. I'm assuming its hereditary so the likelihood of me suffering it later in life is high so I'm keeping a close eye on medical advancements hoping by the time I get older they'll have made some advances.

Certainly in my grandparents case there was not much they could do. Both were in reasonable physical shape so no complications physically so their decline in their last years was definitely all down to the Dementia. According to the latest thinking it seems keeping active both physically and mentally later in life does help to combat the effects and in both my grandparents cases they were not particularly active, especially mentally. So that's my plan...keep exercising mind and body for as long as I can.

I am sorry to hear hear that OP. My Mum was diagnosed with early onset in her early 50s, but we believe it had started a few years before and simply was not diagnosed properly. She has not recognised anyone for almost 5 years and is in the final stages of the disease - she’s not 70 yet. She was very scared in the early stages as she had seen the same thing happen to her Mum.

The truth is that it is pretty cruel diesease I am afraid. I would try and get your loved ones to get support as soon as they can. Even if it is just someone to talk to.

My Mum is now in her third care home and my Dad cared for her for many years at home. It is tough on both the patient and carer; there isn’t lots that I can offer, but getting support from the people in the know is important. Big hugs to you and your family.

father in law was diagnosed with it.  He had trouble with his memory and we found that he was mixing up old memories with new ones.  He also gets something into his head and has to do it - like looking for a pen even though his dinner is out.  He goes through patches of good and bad moments.  There is no timeline to his progression as you need to see how the brain is deteriorating over a period.  He may not even progress past how he is.

I'm sorry to hear your brother is suffering from this disease.

My Dad went into care 15 years ago at 67 with Vascular dementia.  He's still alive and kicking physically but the last few years have been tough. I think you've just got to try and take some positive out of every day with them; I used to say that even if I could make my Dad smile for a second that's one second's worth of smile he wouldn't have had. Sadly I can't make him smile anymore.

I'm worried that my mum is starting down the slippery slope too. TBH, I've got more immediate issues on my plate so I'm doing a lot of compartmentalizing at the moment.

I raised a fair bit for Alzheimer's Society in the MM24 a couple of years back; I need to do something similar soon.

Theres a very good book called 'Someone I Used to Know' by Wendy Mitchell. I think for friends and family its quite difficult to know how to engage with someone with Dementia as the person tjhemselves can often be least aware of how the condition is effecting them and can be the least well equipped to articulate what they are going through. But Wendy has been able to write really well about her own condition and the insight is really useful for those on the outside. Particularly as she is  someone who began to experience the condition relatively young and was holding down a job while learning how to live with the symptoms.

Not least theres one really useful description of what the condition effects and doesn't effect that is worth the price of the book on its own in my view. She describes a person's memory as a shakey bookcase. Your earliest memories being on the lowest shelves and your most recent ones at the top. Dementia is like the book case being bumped and shaken and the books the top are most easily knocked off and maybe get even mixed up with the ones below.

But whats really important is - people have two book cases. The second one is really well built and it contains what we feel about things, not what we know. So while at the extremes of the condition sufferers might forget who the people closest to them are they don't forget how those people make them feel.

I think being part of the world around someone with dementia is a real skill but its a rewarding skill to have.

AND...it should in no way be too late to be organising power of attorney - diagnosed is not the same as incapable and a diagnosis closes far fewer doors than you might expect. But POA is worth its absolute weight in gold in later stages of the condition

Thanks all for your honest responses, and for not sugar coating it. My first post was off the back of a sleepless night, but a bit of time has allowed the original anger to subside and some rational acceptance to start building.  It's going to be a rough ride but it seems the final destination won't change. This is the third or fourth person I've known who's had a life changing event at this life stage - only a few years ahead of my age - so it's given us a major prompt to start thinking about how we use the here and now rather than putting things off for a retirement that might not work as expected.

My mum has vascular dementia with a side order of Alzheimer's. It is shite, no other way of describing it.

My Grandfather died of it in his early 60s, I still remember him walking back from the Bowls club having driven there and completely forgot he'd driven. There were no drugs back then, so he went downhill pretty quickly and was dead in a few years. My father is slightly paranoid he'll get it, so works as hard in retirement, writing books, as he did when he had a job.

I've logged into the forum for the first time in years, merely to say, Dementia is an absolute ****. Sorry, not sorry about the language. It just is.

Alzheimers Scotland have been great, if you are in Scotland, give them a shout. The general NHS and LA Social Work services have been less so.

My Dad is 70 and was diagnosed with generic "dementia" a couple of years ago, but we realise now that a decline had been ongoing for a few years prior to that. Made worse by his diabetes, which is fairly common. The speed with which he deteriorated from living independantly, if absent mindedly, on his own, to having to live in a nursing home with 24 hour care is terrifying, whenever I get a minute to stop and think about it. Luckily (unluckily?) I've just been granted Guardianship, so I don't really get much time to think about it!

As we keep getting told, Dementia is progressive and theres not a huge amount can be done to treat it. Deal with what you can now, while you can: POA is FAR easier to deal with than Guardianship, for example.
For me, it was best not sugar coating anything. I think it was best for me to accept the reality and do what needs to be done.

Good luck to you both.

A lot can depend on what type of dementia it is; vascular dementia can onset slowly.

I am very surprised to read here someone has had it 20 years from diagnoses. From my experience not many go much past ten years after being diagnosed ... earlier the onset generally means faster the disease affects them.

Its the biggest thing that scares me about getting old. Its about time this country allowed and assisted people to end their life when the onset of this cruel disease gets an issue. Its a disease I wouldnt wish on my worse enemy.

Having worked with dementia sufferers, and also been on the outside looking at how dementia affects the families, its a huge problem for the NHS, and families and freinds to cope with,its progressive, with little to help stop the onset or the effects.

Be a freind, a relative,partner and remember the person as they where not as they are now becoming, chat and be supportive, accept the mood changes, sometimes aggression, and confusion along with loss of memory for recent things, and unbelievable memory for the things that happened many years in the past, its a huge roller coaster of emotion, and in a few years time i will probably be dealing with it in 2 freinds.

My dad has what was diagnosed initially as early onset/workage dementia. In hindsight symptoms may have first been evident late 40s early 50s. I wonder if he knew at that time as later in his working life he was aware that his own father had died of 'Alzheimer's' before reaching 70 (afaik all dementia was Alzheimers in the 80's)
Turns out he has Frontal Temporal Dementia, FTD, one of many different types of dementia and one that we now know is genetic.
Anyway, I'm living abroad with a young family so living the struggles my mum has, one step removed daily at the end of the telephone, and my impression is that care options for dementia sufferers/care givers is weaker than many other illnesses.
This has become evident as on the bright side (yes..compassionately speaking) he was diagnosed with Acute Myeloid Leukemia ,AML at the start of the year with a ~3mo prognosis considering the appropriate treatment options for a dementia patient.
Help/care/support has been massively improved now that he is in the big-C territory.

The other huge issue with Dementia is its unknown/frightening nature to those around you. Not through choice, my parents circle of friends rapidly reduced to maybe 2 or 3 core couples who were prepared to provide real help and emotional support. Very few visits/invitations from local friends during 'dementia only' diagnosis but once the leukemia, a more widely understood terminal illness, was on the table, those people came back out of the woodwork for a while as its a more tangible illness to accept. I absolutely understand this!

As far as dealing with the reality of the disease onset, your sister and BIL should look to get involved with people in similar circumstances as my mums experience is that there isn't anyone else as capable or qualified to provide the emotional support as someone who is going through the same (or very similar) challenges that are unique to dementia.

Her biggest issue with coping was not being able to accept for a long time that he wouldn't just wake up one day and be back to normal. The man she spent her life with was still there but rapidly disappearing and unable to sit and reminisce and share memories of their life together.
My Dad was prudent at saving for their retirement with a view to enjoying those years with grand plans. Sadly not to be.
So, i think the big takeaway for dementia sufferers is to make efforts to create experiences, not necessarily create memories. My Dad can be made happy in the moment, but he couldn't tell you what he did 12 hours ago.

My Father passed at sixty got the double with Alzheimer's and MND. The obvious joke was that the Alzheimer's meant he never actually realised he had MND.

I was advised by a good work mate who actually knew him that the best way to care and support was to  try and treat them as if you are in their world.

This worked for me as I was only ever a part time carer, my Mother bore the brunt of the hard  work.

Having gone through this with my FiL, there's not much I can say but express my sympathy.

i do believe the brain is a muscle of sorts and needs to be kept active, my nan had dementia and then Alzheimers later on, she was always caring for others both for a job, then my grandad as he died with cancer, then the neighbours around her, she would be the one to collect prescriptions or do errands. I think once my grandad and the neighbours went one by one, she nothing to keep her active and to then slip really quickly.

I also have experienced this fairly recently with my father.

He wasn't in the best of health, unfortunately. A lifelong career as a pilot probably flying things that he shouldn't have in the 50's & 60's certainly contributed to him being deaf as a post, failing eyesight & a couple of bouts of skin cancer on his head/face. He has some fairly nasty radiotherapy which seemed to really accelerate his decline & the D word stared to become something the consultants were increasingly concerned about.

As others mentioned, the rate of decline was fairly shocking. he went from being a slightly older version of my father to a very frail, old man in what felt like a short period of time. A couple of falls, and hospital stays followed, and then he caught a chest infection which turned to pneumonia. We were warned at that point it was unlikely he would be coming home. Ended up in a care home/hospice & within a week, was gone, a month before his 84th birthday.

Whilst it was undoubtedly sh*t, we all in our own way thankful it wasn't a long & drawn out decline. The strain it puts on others was very tough and hard to deal with, whilst still trying to maintain a life for ourselves. My mother really struggled with it all & just how consuming it was. I never had the closest, or best relationship with my father but it was still brutally tough to watch the decline in real time. I do try and put it into perspective that no matter how hard it was for us, it must have been terrifying for him.

Getting old must be sh*t.