Husband is 66 with Dementia!

[Bulldog01]

My Husband started to have sleep issues in 2020.They have got worse now.He has fallen out of bed,jerks,shouts,acts out with hand movements,laughs in his sleep.His behavior has become unpredictable.We have seen a neurologist after waiting 2 yrs on the NHS which was awful.Nerologist mentioned that many people with sleep issues may not have dementia and was not interested in helping us to get a diagnosis.My daughter & I think he has Dementia.Most things make him angry & anxious.He asks me to deal with things that he cannot or will not deal with.yet he is in denial.Life is becoming more of a challenge.I really would appreciate some advice from people who are going through this.Tonight he was speaking to our Daughter,while I was upstairs.She is her early thirties he asked her numerous questions.She has been working all day remotely.I almost had to ask him to stop!

My mum had a dementia diagnosis around 64yr old, she's now 71yrs. My mum had been ill for many years before with other diagnosed conditions, COPD and polyneuropathy and also a long history of bi polar disorder for which she had long hospital spells with and also ECT treatment for back in the 90's.

It was a difficult time getting the dementia diagnosis as her other conditions could cause similar issues like forgetfulness with COPD due to low oxygen, disruptive behaviour due to bi-polar etc. she actually had a brain scan in her 50's which showed damage to her frontal lobe and an accelerated decrease in brain function even back then

It took around 2 years from me pushing for a dementia diagnosis before it was finally accepted and diagnosed as vascular dementia. The amount of medics who suggested 'it could be a urine infection, will we just take a sample' made me want to physically throw a punch!My mum had many many memory tests over the years until the diagnosis could have been made by frankly anybody. She now barely recognises anyone outside my Dad and me, is bedridden and has carers 3 times a day for personal care.

There are many many conditions other than dementia that could be affecting your husband though. What has his GP said?

I’m confused, ISo you’ve seen a neurologist and they’re not pursuing a diagnosis of dementia? So who has diagnosed dementia?

I'm not a medical person and although your husband sounds very difficult and quite possibly has mental health issues these signs are not the usual signs of dementia. Go back to the GP and ask to be referred )to a memory clinic.

Sounds like it could be Lewy Body Dementia. I hope you get the right support you need OP.

Has the neurologist written a letter? Did it suggest anything?

I'd go back to the GP and ask them to explain the letter and whether there might be any support out there and what they think is going on. It sounds like a referral to the Older Adults' Mental Health Team might be helpful?

Pay for a private Neurologist appt.

Have you done the online dementia tests.

The symptoms you describe are not conclusive enough to jump to a dementia diagnosis yet. But, if you are worried £500 to £1000 privately would put your mind at rest just make sure it is not the neurologist you have already seen.

Go back to gp and politely but firmly insist that Dh is referred and seen again, don't be fobbed off.

Could be anything
Why do you think is dementia and not something else?
Can you pay for private neurology and mri brain scan?

Hi OP. My dad was diagnosed with frontotemporal dementia at 61. Symptoms all behavioural rather than memory. I think when people think dementia, they think old age forgetfulness. FTD is rare but the most common form of early onset. We had a difficult time getting my dad diagnosed because he was young and fit and it took repeat visits almost begging the doctor to help rather than repeatedly diagnose depression. Other PP are right that it might not be dementia but equally, you know your husband and will recognise changes so please keep pushing for support and a diagnosis. Once diagnosed there is so much support for the person living with an illness and their families.

My Mum first showed signs of dementia at 58 so it’s not unheard of. Push for further investigations.

They're not symptoms of Alzheimer's dementia but from personal experience, behavioural and personality changes absolutely could be symptoms of other forms of dementia. My dad was diagnosed with FTD but was able to pass all sorts of memory tests for a considerable time beyond his diagnosis.

Hi OP,

my dad was diagnosed with a form of dementia based illness at 45. It’s called
CADASIL, and it’s basically bits of his brain dying either from blockage in small veins or TIAs which in turn causes dementia. His was pretty much all behavioural based. He would make strange noises, laugh at nothing in particular, and just behave really oddly. Please go back. Although it’s very unlikely to be the same thing, there are so many other things it could be. What is his family history like? We dug deeper and realised that his brothers, dad, uncles and grandmother all had the same disease x

Sorry to hear the neurologist was so useless. I have heard that insomnia can be a sign of Parkinson’s, just to add another possibility.

Good luck with getting a diagnosis.

@Bulldog01 I’d advise you to ask your GP to refer to a sleep disorders clinic…most bigger hospitals have them , what he is experiencing at night may well be feeding into behavioural change in the day as good quality sleep is so crucial for mental health

I'm not a doctor, OP, but some of what you describe sounds like Huntington's Disease.

I hope you can get someone to take this seriously for you.

@Bulldog01 to explain further, many of his nighttime symptoms sound like some form of parasomnia, I’m v,surprised the neurologist didn’t think laterally about referring him elsewhere, as sleep studies may cast some light on what is happening.I don’t know if he’s on any meds eg. Anti depressants that can be linked to parasomnias

DH was diagnosed with Lewy bodies dementia at about the same age. In terms of advice I would look to work with your GP and a specialist consultant to make sure DH has the right drug therapy. Key components for this type of dementia will be some form of cognitive enhancer (in our case rivestigamine), an anti-psychotic and some form of anti-depressant. The right drug therapy is very important and can help preserve a reasonable life for as long as possible. once a diagnosis is given in our experience, there is no further involvement from the neurologist on the grounds there is nothing they can do going forward.

It is worth getting in touch with local groups and the Admiral nurses who can provide you with very specific support and advice. The symptoms from LB vary but initially can include paranoia which can be quite challenging to cope with. Medication helps enormously.

I would see if your DH will allow you to take out POA (health and wellbeing and financial), this will make administration easier as things progress.

Benefit wise you should have access to attendance allowance (not currently means tested) and potentially carers allowance. You can also get a council tax reduction.

Beyond this help is thin on the ground unless you pay for it. If you go down this route there is a website many councils recommend called UKCIL.

Please make sure you look after yourself. Dementia can be very hard on partners and families. At times I have found it mentally almost crushing, but I have had support from family and some friends. Some though equally ditched us when it became apparent that DH was ill and this has also been hard.

On getting a diagnosis, with DH this was quite tricky. For some time he would not go to the Doctor’s and was very paranoid about me wanting him to go. In essence he convinced himself that me wanting him to see the GP was a way of getting him put in a home. Eventually the paranoia got so bad that he had to be sectioned. I would try and gently encourage him to see his Doctor and then push the Doctor strongly to see a neurologist. Dementia can be diagnosed from a series of tests and scans. It took us c. A year to get a full diagnosis.

I appreciate your kind response & knowledgeable helpful information.My Husband is usually very pro active looking after is general health.When I mention anything to do with his sleep problems, & other issues possibly a Neurological condition.He seems to think that I am over reacting,if anything I have been the opposite.It often can start a conflict between us.The doctors gave him a phone call almost 3 years ago,they do not think he has dementia.My husband had a machine from the hospital to monitor his sleep issues. Nothing came from that. He does not want to accept that he may have a Neurological condition.The doctors he has seen have not been helpful in finding a diagnosis.I think when these issues happen in old age, partners know when something is not quite right!

My mum has Alzheimer's and it did take a lot of pushing with the GP at first but once she saw an NHS neurologist they were very good and agreed that mum's symptoms were most probably dementia. It was the neurologist who finally diagnosed mum.
Apart from the sleep issues, is your dh show signs of dementia in his waking hours?

@Xmasxrackers what made you realise
that his brothers, dad, uncles and grandmother all had the same disease ? Hope you dont mind me asking z

My dad and his brother were having the same symptoms and were put through the same tests, they did some genetics testing and looked at medical records through their family, but once they were both diagnosed they knew that the majority of their family had also been suffering the same symptoms even if they weren’t diagnosed with it. It’s hereditary so it must have come from one of their parents, which also came from their parents etc

What assessments did the neurologist do? If they’re sure it’s not dementia then they must have done assessments to rule that out. What did they say will happen next re sleep issues?

@Xmasxrackers thank you for responding. We are currently looking into this in my family. So did the relatives of his that are no longer alive all pass away from dementia? I'm going to start asking about my family history further up the line xx

Either dementia or strokes mostly. My sister and brother have both had the genetics counselling and the test to determine whether they have it or not. My brother is clear, but my sister has the gene. I haven’t had the test but I have a feeling mine will be positive as I have the same migraine as my dad has, which was his first warning sign as it were. It doesn’t develop at the same rate for everyone. My dad is in his mid seventies now and hasn’t really seen much change for over a decade, but my cousin is in his 60s and is already in a care home not able to do anything much anymore.

is it Cadasil you’re family is looking into or something else? X