The Right Care for Lewy Body Dementia


Registered User
Sep 11, 2007
South UK
I wonder if anyone can help me out here.

I'm 39 and my mother is 79. Always very bright and trendy (the vespa and mohair, bar italia and brigette bardot generation!!), she had an atypical Parkinson's diagnosis (ealry fall syndrome, no shakes, treated with madopar) until last winter when she fell from bed. She broke her hip, her replacement hip developed sepsis (no doubt caused by her delirious state in hospital and lack of trauma bed). She was re-diagnosed with Lewy Body Dementia and ended up with her hip removed and is in a wheel chair. So she needs hoisting, she has a crash mat by her bed as she has nighttime disturbances, but take her out to a restaurant and she's there with a glass of wine having a wonderful chat and knows all the news, perfect memory with the odd strange confabulation or glitch in her mind's processing.

She is in a (in terms of care) wonderful private care home, but we have a problem. She is 70% of the time totally switched on, aware, chatty, bright and so on and so forth. She suffers hallucinations and episodes, classic Lewy Body, these kick in as and when.

The problem is everyone around her are very very deeply affected by their dementia and she HATES it, and stick out like a sore thumb. My understanding is that no home will accept her unless it caters for dementia, and in the area where she and dad live (he is 85 just up to road so very convenenient for him), there don't seem to be any mixed homes. I've bneen told all the dementia homes are just the same. We plan to move dad with us and mum up the road but in the next 9 months I want to see her cared for but happy in a lively fun environment. Her psychiatric specialist shares our concerns, it is very hard to see her crying about how awful it is to be taken out of bed, denied what to wear, when she can brush her hair or make her face up etc etc, and to be surrounded by people who hold dolls and can barely talk.

Any thoughts? We feel rather desperate because she is so unhappy but there seems to be a real shortage of places where she can be looked after for. As an only child and 39, I really need to find a place that allows us to know she is well and have time to grow our young family too, all quite tricky.



Registered User
Jun 27, 2006
Hello Sandwichboy, and welcome to Talking Point.

I understand where you're coming from: my mother had several strokes, but on a good day you could have a decent conversation, and she would sometimes refer to the other residents of her nursing home as "those loobys". Fortunately, or unfortunately, she was sufficently infirm that she spent most of her time sleeping and didn't feel the need (or in fact was able) to get up and socialise, otherwise I'm sure she would have felt out of place.

While I agree that your mother does need a facility which is licensed for dementia care, I have to say that the environment she is in at the moment seems unecessarily restrictive: not allowed to choose what to wear? I don't think that's standard procedure. I assume you are familiar with the web site where you can search for nursing homes and read reports. I would strongly suggest making a list of possibles and visiting them: most places at least pay lip service to the concept of "person centered care" which it doesn't appear that her current home does. I would disagree that all dementia homes are the same, but you'll only find a suitable one by looking at them.

You might also want to contact your local branch of the Alzheimer's Society: if nothing else it may bring you into tcontatc with people who have loved ones in suitable (and unsuitable) homes.

Best wishes


Registered User
Mar 7, 2004
Hi, and warm welcome.
I've bneen told all the dementia homes are just the same.
Definitely not true.
denied what to wear, when she can brush her hair or make her face up etc etc,
certainly not necessary.

Speaking of Lionel's care home, great pains are taken to ask residents what they would wish to wear, encouragement given to personal toiletting, i.e. hair, make-up etc. and a choice of menu offered.

Of course not everyone is at the level where they can take full advantage of these services, but care is geared upward, not down.

Good mixed homes are out there, even very good EMI homes. Takes time and patience to find admittedly. Hope you find something more suitable for your mum. Take care