Paranoid Delusions.... what is the right thing to say?

[CogitoErgoSometimes]

My DM (76) is suffering from paranoid delusions which may be Alzheimers related and has recently started taking anti-psychotic medication. However, this doesn't appear to be improving matters and she still has what sound like very vivid hallucinations of people doing everything from camping out in the garden & ripping up shrubs, to 'stealing' wallets, keys, handbags inside the house (which turn up again in funny places). DF is on the front line coping with the resulting agitation and getting a lot of the blame. He'll be contacting the mental health team tomorrow and asking them to review her medication

I live at a distance so am restricted mostly to phone calls. I'm conscious that I can't contradict what she is saying or it makes her upset. On the other hand if I confirm what she's saying DF is expected to call out the police etc. So far I've tried to distract, change the subject or simply be a listening ear.

Does anyone have direct experience of paranoid delusions and any suggestions about how to talk to a sufferer? I feel desperate that she's living in a nightmare and I can't comfort her.

Cogito that sounds really distressing for you all. Does she remember any of the previous dramas or just move from one to the next? I'm not an expert by any means but how about reassuring her that df has dealt with it and there's no need to worry? Do you have any agencies involved or other external support? When dmil had severe dementia she had a 'club' she went to a couple of times a week so poor dfil could have a break and do the shopping etc which he couldn't do with her. Other family experience just tells me to ensure your df gets some time away from the front line as he is probably taking more if the strain than your dm. Can her gp give you any pointers? So sorry you are having to deal with this.

She is really very lucid when speaking about the delusions and they appear consistent if not exactly rational. She has a suspicious and negative personality anyway so it hasn't been a huge transformation, more a gradual exaggeration. Her relationship with my DF has never been good, sadly, and she's been quite bullying towards him down the years. So if he says he hasn't invited these 'people' in for a party (one of her accusations) she dismisses it as lies. Dad isn't in good shape physically himself.

The only agency support at the moment is the mental health nurse. It's a very recent diagnosis as is the medication so we're all just feeling our way and don't know what else to try.

My dm does not have Alzeimers but has always been paranoid. I've tried almost every type of reaction over the years, the best is to be sympathetic (acknowledge her feelings) but rational, trying to rationalise her away from the delusion gently. It doesn't always work, sometimes it seems like she really wants to be worked up about something.

this page on rethink has some good advice.

arguing probably wont achieve much and you are unlikely to persuade her that her ideas are not true, esp if she has lost insight because of dementia. try distraction and if that doesnt work try just listening and if possible try not to get upset. Does she definately have alzheimers-you can get paranoid delusions in alzheimers but it can be more pronounced in some other forms of dementia. Cognitive enhancers can help paranoid delusions as well as anti-psychotic medication -and sometimes changing to another anti-psychotic can help. Alzheimers scotland are a great source of info and most have local drop in centres where you can get support and information -not so sure about in situation in england

Have you heard of Paraphrenia? It's a subtype of schizophrenia which only affects the elderly. She might benefit from an antipsychotic. Please contact your gp ASAP.

www.cavamh.org.uk/directories/directions/caring-for-a-person-with-late-life-mental-illness/practical-guidelines-for-caring-for-the-person-with-paraphrenia-late-onset-psychosis

Thanks for all the advice. My DF definitely needs a break from it. He has Parkinsons but is still relatively mobile and manages to get out and about still. However, he's nervous about leaving her alone for a period of time. As I say, it's early days for the anti-psychotic medication - which she is taking, fortunately - so I think that is going to be reviewed and I will mention the cognitive enhancers

" sometimes it seems like she really wants to be worked up about something."

This rings a bell. A gift from my DB a few years ago which she never liked from Day 1 has been returned to him with claims that it was attracting 'people' into the house.

We don't know if it is definitely Alzheimer's although I understand that there are many different versions and diagnosis is not simple. She has undergone a brain scan as there was a suggestion she could have had a mini-stroke. Up to the delusions, however, she had been displaying more 'classic' symptoms of memory-loss, difficulty completing simple tasks, struggling to understand a calendar etc.

Update... DM's anti-psychotic medication has recently been increased in dosage but the paranoid hallucinations seem as lively and vivid as ever, unfortunately. I'm conscious that she is not going to get better and would be satisfied if she could at least find some peace of mind.

My mother reacted very badly to the usual drugs prescribed for Alzeihemers. Her hallucinations became much worse. Which was because she didn't have Alzeihemers. We think my mum has a form of dementia called Lewy Bodies - it is dementia with some Parkinson's symptoms. It isn't easy to diagnose apparently but one thing with it is that the normally prescribed drugs for other forms of dementia make the Lewy bodies patients worse.

We were told it didn't matter what type of dementia she had as the treatment would be the same. Until the second time the hospital prescribed the drugs we had told them she reacted badly to. They were saying she had vascular dementia. But we are convinced it is Lewy bodies - may be worth googling and seeing if anything fits with your mum.

Sympathies Cogito - it's horrible.

Thanks for responding. Lewy Bodies has come up before but they weren't convinced she was displaying the right symptoms. I've just had a panicky call from my Dad because she deliberately locked him out this morning while he was gardening, and it sounds like he had to force his way back in. He's going to call the psychiatric team. I'm not what else to tell him beyond making sure they know the treatment is having no effect.

Respond to the underlying feelings, not to the actual content. If she is having paranoid thoughts then imagine how distressing these must be. if they centre around people stealing from her, respond to the feelings of confusion and annoyance and anger.

Sympathise "My goodness, that must be really worrying, thinking things have gone missing" then try to distract, "come in and have a cup of tea while we have a think about what to do" or "Let's see if we can remember where your purse might be".

Trying to contradict when somebody is distressed and highly aroused won't work.

A lot of her thoughts come from her feelings of confusions (things aren't where they are, in her brain, her thoughts and how she feels and sees the world) and these can manifest into real things going missing, appearing different etc. Lewy Body causes these typical hallucinations plus some issues with spatial awareness, balance etc so she does need expert diagnosis and then care planning.

Finally, ask the older persons CMHT to teach you some coping skills and strategies for managing your own selves w/ relation to her outbursts. There isn't always a great deal that can be done to change the presentation of somebody with these awful illnesses BUT much can be eased by supporting and informing you,

Good luck.

Thanks very much for the advice. I do try to imagine how distressing the confusion must be and so does my father but she is in the grip of terrible paranoia and he is getting the brunt of it.

Cogito

It is so hard on family isn't it? There are online and telephone support services that can offer info and help to your Dad. Often knowing what is happening and why a person reacts as they do can help take a little of the sting away and help them understand that the insults and accusations aren't personal. Even though it is totally impossible to not take them personally at times.

Your father can be helped and supported in ways to bring these attacks to a swifter close, reducing the length of time of them and minimising the psychological effects upon him. I hope that you can find some support in your local area, if not AgeUK are pretty good and if you have Admiral nursing in your area, they are dementia specialists.