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Late Onset Schizophrenia - Dementia Ignored - Carers UK Forum

Late Onset Schizophrenia - Dementia Ignored

For issues specific to caring for someone with dementia.
Hello
My dad is 79, lives alone with no visitors, in Scotland, 500 miles away from me. I’ve been very aware of dad hearing nasty, threatening and derogatory voices fir about 4 or 5 years now and his belief that his house is covered in hidden cameras with these people (voices) watching him. He is bathing in the dark so they don’t see him. He’s hung a curtain between his sink and toilet so they don’t see him, he’s boarded a bathroom window and his curtains are closed all day and his doors constantly locked. He has a large full size stepping machine right at the foot of the stairs wedged up against the front door to stop the voices entering his house and he’s basically living in fear. He’s lost about 3 stone in weight. Dad has never discussed being diagnosed with anything so I always assumed it could be part of dementia as he was about 74 when this all started. But I obviously considered schizophrenia due to the nature of the voices. Between Covid, my dads weird ways, and distance, I hadn’t actually seen him in about 2-3 years. Partly because he got into trouble with neighbours that led to court and him moving in with me down in England for what he’d originally said would be a few weeks whilst going through the legal process and trial in Scotland but turned out to be over a year. Uninvited and very difficult to be around at the best of times was made all the worse by his odd behaviour and paranoia, me being a single parent with 3 children etc. It was so bad that when he did finally leave, I actually allowed him to return to Scotland and sleep in his car for 8 weeks. He didn’t need to do that. He had his home in Scotland but he was adamant he couldn’t return there because of the way the court order was written. Nobody in their right mind would have pulled apart and interpreted it the way he did but I couldn’t reason with him and in the end I just couldn’t let him stay with us any longer. He was making no effort what so ever to leave and the atmosphere in my home was dreadful. You could cut it with a knife and I slowly felt I was losing out on my time with my children who were all young at the time and have terrible memories of how weird and horrible it was when their grandad was here. They were also getting used to their dads and I having split up. We never knew when dad was going to leave and he didn’t seem to think we deserved to know either. Anyway. As I say, I wasn’t aware of any diagnosis but I did know social workers of sorts were visiting him after his trial as part of justice services. My dad has never gotten over that trial and is determined to clear his name but it is clear to me that it was his mental health that led him down that path which is very sad as he always got on well with those same neighbours and even at trial they all were actually quite kind about him. He was and remains delusional, hence he believed his much younger female neighbour fancied him. She didn’t but he believed she did and I guess she finally felt he needed cautioned by the police but it went further than even she wanted. She hadn’t expected dad to be arrested let alone go to court. Anyway, putting all that to one side, through phone calls and texts I was starting to notice other things about dad. He was sounding confused about the simplest of things. He needed to be repeatedly told the same information or instructions over and over again. Daily. His texts to me didn’t always make sense and he jumped from subject to subject. He was forgetful. His shopping lists were odd (I do his online shopping). And I was starting to feel dementia symptoms as much now as the voices and delusions etc so I decided to go visit for a week and got social worker, mental health nurse, personal alarms, key safe, tag alerts set up on items he lost often in a day and got a whole load of other stuff done too. Most of which I’m realising was a waste of time as he thinks his personal alarm is to find his keys and his key finder labels he can’t relate too etc. There is no doubt he has dementia and he has it bad. Really bad. It was during this visit that I learned dad was diagnosed as schizophrenic about 4 years ago and although he tried an antipsychotic, he didn’t continue as he lost feeling in his legs and wet the bed etc. It was the social worker who told me about the diagnosis. Dad and I have never mentioned the word schizophrenic. He gets day and night muddled up, forgets relatives names, aggressive if you argue with him, can’t use his washing machine and doesn’t remember using one before. He takes no medication for the schizophrenia and refuses to accept he has it. He believes the voices are real and of course, living alone with nobody telling him they can’t hear any voices, I can understand why he believes that. He has heard voices when I’ve been with him though so he does know that. My biggest issue is that his psychiatrist is saying they are not going to do any tests for dementia because the schizophrenia will have done damage to his brain and because he’s not taking medicine fir the schizophrenia they believe he won’t take or comply with anything to do with dementia. Both his sisters had Alzheimer’s. My argument is that the dementia shouldn’t be ignored just because he has schizophrenia and I know my dad feels the stigma of that and that doesn’t help him to accept that incase people think he’s ‘crazy’ plus the voices want him to look crazy to everyone else so he’s removed from his home and the voices who he believes are criminals and include his neighbours, will take his home. I know he’d happily do tests for dementia as it’s so common and doesn’t carry a stigma. But also, without a dementia diagnosis he’d miss out on residential care for dementia sufferers if he needs to go into a home. I feel he needs to be in one right now. And with the schizophrenia, I don’t know what homes accept that condition. Dads opening up to the idea of going into a care home, perhaps even one down here close to me but I want him to be tested for dementia so we know what all his needs are. His schizophrenia is late onset only since 74 years of age and I dont want that to deprive him of any other care/support. Can I insist his psychiatrist tests him for dementia? The Nurse says they won’t.
Hi Virtualcarer,

I agree your Dad should definitely be tested for dementia. The psychiatrist is guilty of 'diagnostic overshadowing' - something that often occurs in those with a learning disability too.

Is the psychiatrist a specialist in geriatric care and does he have experience of treating those with dementia?

A psychiatrist isn't the only person who can diagnose someone with dementia and there is more information here https://www.nhs.uk/conditions/dementia/diagnosis/

Even if your Dad doesn't want to take medication he still has a right to accurate diagnosis as this will affect his support and services etc.

Look for care homes that also offer nursing care, so that as he requires more care this can be provided. Homes that provide care for those who are elderly mentally infirm care for those with schizophrenia.

Melly1
Virtualcarer,

Have any of the medical profession actually seen dad at home?
Sometimes seeing the home situation really helps show the true personality of someone, far, far better than seeing them in a consulting room. Parents are notorious for sensing that they are somehow under investigation so they put on an act of normality when they are far from normal!
Doctors are especially reluctant to do home visits, but some will go using phrases like "we haven't seen you at the surgery for a long time, and like to keep an eye on our most senior patients".
Normally I'd suggest taking a few photos (some don't like this idea) but somehow or other dad needs far more help and support than he's getting at the moment. Does anyone at all ever visit the home?
Melly1 wrote:
Tue Nov 09, 2021 11:19 am
Hi Virtualcarer,

I agree your Dad should definitely be tested for dementia. The psychiatrist is guilty of 'diagnostic overshadowing' - something that often occurs in those with a learning disability too.

Is the psychiatrist a specialist in geriatric care and does he have experience of treating those with dementia?

A psychiatrist isn't the only person who can diagnose someone with dementia and there is more information here https://www.nhs.uk/conditions/dementia/diagnosis/

Even if your Dad doesn't want to take medication he still has a right to accurate diagnosis as this will affect his support and services etc.

Look for care homes that also offer nursing care, so that as he requires more care this can be provided. Homes that provide care for those who are elderly mentally infirm care for those with schizophrenia.

Melly1
Thank you for your reply. The psychiatrist is part of the Psychiatry in Old Age Team and so I believe is familiar with dementia. However, it was his Community Nurse who spoke to me. The psychiatrist has never as yet returned any of my calls.
bowlingbun wrote:
Tue Nov 09, 2021 12:13 pm
Virtualcarer,

Have any of the medical profession actually seen dad at home?
Sometimes seeing the home situation really helps show the true personality of someone, far, far better than seeing them in a consulting room. Parents are notorious for sensing that they are somehow under investigation so they put on an act of normality when they are far from normal!
Doctors are especially reluctant to do home visits, but some will go using phrases like "we haven't seen you at the surgery for a long time, and like to keep an eye on our most senior patients".
Normally I'd suggest taking a few photos (some don't like this idea) but somehow or other dad needs far more help and support than he's getting at the moment. Does anyone at all ever visit the home?
Hello. Thank you for replying. Only the community nurse has visited and I believe only the one time, when I was there. All dad gets is a phone call every 6 months. The community nurse (part of the mental health team) didn’t walk round the house. But she did listen to what I had to say and took notes from anything dad said. I will keep nagging the psychiatrist until I get a response. I managed to get a social worker out and she got the council to send stickers for his outdoor bins so dad doesn’t need to put them out and in etc. She also arranged for a personal alarm and I have tagged all the items he loses frequently with little alarms. Problem is, he’s even confused with all this stuff. He thinks the personal alarm is to find his keys and can’t understand that if he presses the little picture of a wallet on his finder base then he will find his wallet. Etc. He says he doesn’t work with pictures but colours. He doesn’t remember ever using a washing machine and simply struggles to use it. I don’t think the full picture has been put over to the psychiatrist so I will follow that up. I’ve taken lots of photos of his home too. He owns his own house but has no savings and does have outstanding bank loans and credit cards and a small mortgage. Do nursing homes ask for payment up front or will they wait fir the house to sell to get their money?
I see your post was last year. Interested to know how things are now. Your dad's situation is awful. I'd be saying write to both the GP and psychiatrist. A diagnosis for dementia for definate :( . His medications need reviewed. Should be getting home help to ensure he gets his meds plus home help. He's just not able to care for himself and he's definitely been failed by both his GP and social services. I'd say he's a danger to himself and therefore he's been let down. I'm thinking from what you said he'd possibly not let anyone into his home though. It's such a shame your dad's situation has got to this. My mum has dementia. Got her diagnosed by a psychiatrist who I was put in touch with by her GP. They have at least been very helpful. I was given a nurse who gave me advice as to other services available to my mum. Now at the stage it's becoming more difficult to manage her. My brother now lives with her full time and he is exhausted. We have opted for carer to come in for her self care which will help. Meantime she is on a waiting list for a care home, which I believe will be several months. Did you ever consider becoming Guardian for your dad? I've been in touch with a lawyer to do this as it will make it easier to do and organise certain things for my mum. I left it to late for power of attorney. As for managing my mum, her Altzheimers has caused her to be agitated, angry etc so much so her meds have been changed a few times. Her Psychiatrist Dr has had to review and change due to the fact she was becoming a danger to herself and her neighbours. During lockdown we had 3 weeks where the situation was awful. I phoned the Dr and voiced my concerns and basically suggested she needed an antiphychotic. It did help but I find as time goes on the dosage loses its effect therefore a psychiatrist nurse does home visits. We also have a situation with my mums incontinence which means constant washing. We were told that an operation was not an option due to her age and dementia. I just imagine how your dad is coping and able to care for himself. I do hope that things have improved for you and your dad.