Could this be early onset dementia?

[funnylugs]

My husband and I have not lived together for several years. He has autism and chronic mental health issues. Last year, he had a physical and mental collapse and ended up in a psychiatric hospital and rehabilitation unit for about seven months. He was discharged to a residential care home because he was assessed as being ready to leave hospital, but not capable of living independently.

As the months have passed, I have noticed that the improvement we had hoped for is not happening. I am beginning to wonder whether he has early onset dementia. He is 64 and has serious arteriosclerosis. These are the behaviours that concern me:

1. He spends long hours in his room, only coming down for meals. When I ask what he does in his room, he tells me he 'reminisces'. He does not watch television, listen to the radio or read.
2. He keeps 'losing' his clothes. He asks for things, such as Tena Man, and when I bring them, I find he has a pile of these things in his locker.
3. He began to have problems driving. He got lost on familiar routes, and kept panicking because he was unsure of distance and speed. This was before he had his crisis. For forty years, he had been an excellent driver.
4. His voice is 'weak' and he seems to slur his words, sometimes what he says is not quite meaningful, because the wrong word has been used, or he has swayed off topic.
5. He shuffles when he walks, and he now needs a wheelchair to travel any distance. He also claims that or cannot get in and out of the bath safely.
6. He needs prompting to shower, change his clothes, come down for meals.
7. He has lost a considerable amount of weight possibly due to not eating properly when he was in hospital. However, his appetite is still poor.

He has undergone a barrage of physical tests, and these are all clear, and he is not on anti-psychotic medication (only an anti-anxiety medication).

No-one at the care home has told me what their working 'diagnosis' is. They tell me that it is his choice to stay in his room, and they respect that, but encourage him to join in with activities (which he chooses not to do). However, there is a review meeting on Monday. I have told my husband that I will be asking questions at the review meeting, and that I may ask whether or not he has been assessed for dementia. I just felt it was right to be honest with him. He did not really react to this.

I just want to know what is wrong with him. If he is depressed, then why is he not seeing a mental health professional? If these are autistic behaviours, then why is he in a residential care home? If it is dementia, then how can I help him?

I know diagnosis cannot be given via the internet, but would the behaviours I have listed justify me asking direct and pertinent questions to the professionals at the meeting on Monday?

[SiouxsieSiouxStiletto]

You are his wife, of course you can ask questions.

What are you planning to do if the finding is removed at the meeting?

[funnylugs]

Hello SiouxsieSiouxStiletto,

Thank you for replying so promptly. I do not think the funding will be removed. The meeting is a review, and I hope to gain a little more clarity about what exactly is causing my husband's problems, and how I could help.

If by any chance the care home providers said they could not meet my husband's needs, then the social worker, who will be attending the meeting, would have to start the ball rolling to find alternative provision. We would still need to know what my husband's 'diagnosis' is, if he has one.

[SiouxsieSiouxStiletto]

Sorry, I thought it was a finding review? That's what it sounded like from your post.

[pixiesaresmall]

Any tremors at all?
The shuffle, memory issues and weak voice could be Parkinson's. Could the gp assess before the review?

[Princesspollyyy]

I was going to say that the shuffling and weak voice sounds like Parkinson's. Sorry I can't be of any further help but hope you get some answers.

[makingmebrighter]

I read this and also thought of Parkinson's. My dad has this and I suspect had it for a long time before it started showing visibly (with a tremor). His earlier symptoms were depression, mood swings, an unusual sort of walk, problems with his speech and then these episodes of slight 'freezing' where it was like his brain momentarily couldn't figure out how to put one foot (literally) in front of the other. He developed a tremor later.

Parkinson's does differ in people and so if it is that, there's a possibility he could make improvements with the right medication and physio/speech therapy. We thought for the longest time (pre medication) that this would be a slow decline toward death but my dad is 8 years in and has just got remarried. Obviously everyone is very, very different but medication can help hugely if you get the right diagnosis.

I hope you're soon able to get some answers!

[funnylugs]

Thank you again for the responses. I apologise, I have never heard of a 'finding review', but I could ask if one is going to be held.

I have never considered Parkinson's, mainly because there is no tremor. My husband has been for various scans and blood tests, but, as for as I know, he has not had any test for Parkinson's or any cognitive tests for dementia.

[SiouxsieSiouxStiletto]

Sorry that was a typo, I meant Funding Review.

[Ohdearwhatnow4]

It doesn't sound like dementia, I don't know much about parkinson's so can't comment on that. With dementia although some don't do much they often get very confused rather than forgetful and they don't reminiscences they believe that what their remembering is current. Often their sleep is disturbed along with all aspects of time. Could it just be he's depressed and giving up? How does his autism effect his day to day life, does he want to get better? It must be very hard for you, especially the not knowing.

[Ohdearwhatnow4]

Could the sw arrange for him to go out, even to a garden centre to have a cup of tea and cake or is their any hobby you could try to bring to the home? Is it just you visiting him?

[StarTrek6]

DF had parkinsons - arms hanging at sides, shuffling gait, long sagging face, quiet speech. Small writing is another sign.

[JanglyBeads]

I think it could be dementia, but could be I combination with something else?
One would hope the home would be asking all the same questions you're asking (and possibly have some answers bc of their experience) but they don't sound very active in their management of the situation?

[funnylugs]

Thank you. There is certainly a lot to think about. The possibility that this is chronic depression is valid, but you are correct: the home are not really being proactive.

I think I just want answers. I want to know what it is we are dealing with, and how I can support him to live more independently, if this is a realistic aim.

I bring him things to read, puzzles, I have given him a laptop, because he used to listen to music (and had quite a vast knowledge of music). Yet, he does not engage with any of these things.

He was supposed to go to an allotment, join a support group and even engage in some adult learning at a local college, but none of these activities have been undertaken.

If it is depression, then I need them to tell me. I think I am just very frustrated that my husband seems to have so many needs, and I am not sure what is causing them.

[Spudsanyway]

Ask the GP to review him with your concerns, possible referral to memory services. Xx

[tobyj]

Have a look at the symptoms of Lewy Body Dementia. It's linked to Parkinsons, so shares some of the physical traits (eg shuffling, 'freezing', leaning to one side, sometimes but not always a tremor), but in LBD the dementia starts at the same time as any physical symptoms (in Parkinsons the dementia comes later). Other typical signs are confusion and loss of executive function (rather than memory loss), fluctuating consciousness (zoning out, daytime sleepiness and big differences in confusion/lucidity at different times), sleep problems (especially disturbed sleep, a bit like night terrors), and hallucinations. Symptoms are very variable, so it's often misdiagnosed, but it's actually the second most common form of dementia after Alzheimer's. My relative who has it, had lots of the symptoms you describe, eg shuffling, spending long periods of time doing nothing, a weakening voice, weight loss, confusion and losing things, difficulty driving. He had very few hallucinations, so wasn't a 'classic' case. He only has a very slight tremor, and that came later.

[funnylugs]

Again, this is so supportive, thank you. I went to see him today. I brought him some fruit and some chocolate bars. He was in his room, and someone was going to shave him when I had finished (they have been promising to shave him for about three weeks now).

He told me he had a nightmare last night and had a hallucination for about twenty minutes after he had woken. Staff has told me that he has nightmares regularly. He had used the wet room to wash this morning.

One of his reports does say he has 'cognitive' impairment to do with decision making and some memory issues, and this is assessed as being 'moderate'. However, I do not know what has caused this.

The loss of executive function rather than memory loss really fits my husband's symptomology. However, executive dysfunction can also be associated with autism, so I am not sure. I hope it is not LBD to be honest.

[tobyj]

So do I. It's a horrible disease. Some of the signs can occur years and years before the main dementia (my relative has had REM sleep disorder for about 20 years, and he was told by a doctor way back then that he may develop a Parkinsons-type condition in later life). He's also had loss of sense of smell for more than a decade, which can be another sign.

[Viviennemary]

There are one or two symptoms that could point to Dementia. Like losing things, not finding the right word and getting lost. But his other problems could be a cause too. Sounds like he needs more help and support than he is getting.

[soddingspiderseason]

Hi, sadly it does sound like dementia with lewey bodies. My mum has this and has all the symptoms ypu describe. It does present differently to Alzheimers or vascular dementia, and the shuffling, zoning in and out and hallucinations do suggest it. Ask at the review for him to be assessed for this. At least if you know and have a diagnosis you can start to deal with the practical side of things. Do take care yourself though as it sounds like you've got a lot going on x

[Finishingoff]

@tobyj

Have a look at the symptoms of Lewy Body Dementia. It's linked to Parkinsons, so shares some of the physical traits (eg shuffling, 'freezing', leaning to one side, sometimes but not always a tremor), but in LBD the dementia starts at the same time as any physical symptoms (in Parkinsons the dementia comes later). Other typical signs are confusion and loss of executive function (rather than memory loss), fluctuating consciousness (zoning out, daytime sleepiness and big differences in confusion/lucidity at different times), sleep problems (especially disturbed sleep, a bit like night terrors), and hallucinations. Symptoms are very variable, so it's often misdiagnosed, but it's actually the second most common form of dementia after Alzheimer's. My relative who has it, had lots of the symptoms you describe, eg shuffling, spending long periods of time doing nothing, a weakening voice, weight loss, confusion and losing things, difficulty driving. He had very few hallucinations, so wasn't a 'classic' case. He only has a very slight tremor, and that came later.

I came in to say this too. I have a family member with this and this sounds just like it.

Also, on a practical level, you need to think about finances. Sorry to be so blunt but remember that if you are still married, your joint assets will be considered when paying for care, not just his.

I hope things improve. Do speak to his GP if you can and talk about your concerns.

[Wonderfulz]

Why does he need a wheelchair? Pains or exhaustion or coordination issues?

[Doyouthinktheyknow]

Was your DH on Section 3 when he was in hospital? If so he will be subject to section 117 funding which relieves some financial strain if they continue to deem he has eligible needs for 24 hour care which it sounds like he does.

The review will be your chance to ask any questions you have so take a list and don’t be rushed.

Your DH sounds very unwell and they should be able to give you some idea of what they think his diagnosis is.

[graciousmouse]

I was wondering if it might be bipolar or something, the depressive phase, as it sounds similar to a friend's behaviour. And sometimes can be diagnosed late in life.

[funnylugs]

Hello,

Thank you so much for the replies. What is clear is that he does need some sort of assessment to see specifically if it is some form of dementia. Therefore, I will mention this at the meeting.

He needs a wheelchair because he is unstable on his feet. He shuffles, and when I went out with his, he nearly fell twice. His walking pace is so slow that when he goes any distance it is more practical to go in a wheelchair.

This morning, when we spoke on the phone, he told me he had no clothes to change into. When I mentioned this (causally) to the care staff (again by phone), they said his clothes were in his wardrobe.

He was on Section 2 in hospital, but he was assessed as being in need of residential care. It is meant to be a temporary arrangement, until supported living can be arranged, but I see no progress towards more independent living. I know we should not focus on diagnosis and labelling, but I need to know what we are dealing with, especially if this is a progressive illness rather than a prolonged escalation of his mental health issues.

[funnylugs]

I am just updating the thread.

In early December, my husband was visited by a consultant psychiatrist. The consultant phoned me the next day, saying the my husband seemed to be displaying sings of Parkinson's disease. He asked me if he had shown any of the symptoms prior to his admission to hospital e.g. shuffling walk, stiffness in the face. I keep a diary, and I was able to tell the consultant that I had commented about the way he was walking as early as 2021. The consultant does not think my husband has dementia.

The consultant contacted the GP and asked for the anti-psychotic medications to be reduced, because these can cause Parkinsonian type symptoms. However, he told me that further investigations and reviews would have to be undertaken to see if PD was a possibility after the reduction of medication. The review should also consider whether any of my husband's 'psychotic' symptoms returned.

My husband is still struggling with mobility and had problems carrying a cup of coffee upstairs, complains of legs shaking at night and has told me he has problems swallowing.

I have mentioned these things to staff, but no referral to the GP is made, and there still seems to be the assumption that these difficulties are manifestations of anxiety.

I will be visiting the home tomorrow, and I want to talk to the manager to see what is being done. It could well be the case that the home is monitoring my husband's health, in anticipation of a review, but my husband's physical health is declining and there is no solid explanation for this.