Registered User
Jul 2, 2004
Hello I have never posted here before, but I do read the posts and find they are very helpful.
My mother is currently in hospital (she was diagnosed with AD 4 years ago) where her condition has been re-assessed. She is just 60, looks much younger than her age and has always had a younger outlook on life. She knows she has the condition and knows all our names. We have been advised she should go into a care home. We live in Westminster and there is a care home 20 minutes away that would be perfect for her as it for younger people with AD. Unfortunately there are no beds available for Westminster residents. There is a bed free but that is for the neighbouring borough. Instead we have been told there is only one care home about an hour away available to her. This is because of her age!! Care homes will not take people younger than 65 we have been told by her “care” manager plus he has also told us if we accept this place for her she may not be able to transfer out if a place becomes available at the place we feel she would most benefit. We are very fearful she will decline if we cannot visit her often. My parents have been married 39 years and have only been apart when she has been in hospital so it also very hard for my father not to be able to visit her as often as they would like. My father works full-time and is younger than my mother. Also the other home has mainly older residents and is not for clients with AD. We will be visiting the home very soon and I will post an update. We visit the care home with open mind.

The hospital have also said she needs to move from there as they need the bed so we are feeling very pressured.
We know she needs to leave there soon. We have also had many of her clothes and property taken while she has been staying there (2 pairs of trousers, 7 pairs of tights, 1 pair pyjamas, 6 pairs knickers, jumpers, small items and the list goes on) is this a common problem?. Money is very tight and we just cannot keep buying to replace items all the time but also my mother needs to have these items, so our credit cards bills just get higher.
There are many very good staff there, but also several that seem to think if something has gone missing it is nothing to do with them, why are you asking me attitude. Tonight when my father asked a nurse if my mothers hairbrush (her favourite labelled with her name) that had gone missing 2 days earlier had been found she said “what can I do about it”.
We feel we have to beg them to look in the other rooms even though several of the patient’s wander from room to room unsupervised taking things. When we first noticed the brush missing and asked a nurse she said “ we can’t look for it now we all have reports to write”. It might seem like just a brush or just a trousers etc to them but these items are familiar to my mother new items confuse her. Plus the fact someone has been going through her stuff and taking things is also very disturbing to her and us. It is causing us a lot of unnecessary stress, which is also affecting our health.


Registered User
Jan 31, 2004
near London
Sounds like your parents' situation is the same as ours - my wife Jan was around 58 when she was finally diagnosed, and she moved to a care home when she was 61. I'm younger than her by seven years, and had the problem of trying to work full time as well as care for her needs.

It would help to know more information about your mother's current condition.

You say she is in hospital on assessment, but not the extent to which the dementia has taken hold. Until her third assessment, Jan was able to live at home, albeit with a lot of strain on all sides.

Younger people with dementia are still somewhat of a rarity, though there are three in Jan's home [a fourth one died two days ago], and most homes don't cope well with the younger ones, since they tend to fight the onset more [and can be seen as more 'difficult'] than much older people. A bit of a generalisation, but that is what I have observed.

So, if there is a home that can cope with early onset patients, it is worth fighting to get a place there, particularly if it is closer than an alternative home that may not cope so well.

The problem with care homes is often that different authorities fund different beds, and it sounds as if it is not just a case of bed labelling, but that the other borough [Chelsea?] has paid already so that it has the only call on the free bed.

Patients with dementia are an expensive commodity for anyone to pay for, and places at good homes are like gold dust, so one can see perhaps why you are experiencing this frustration.

It sounds as if Westminster does fund beds at the home [am I correct?], so the route I would take is to try and provide care for her at home until a place there comes available. It may be that it is not possible to do that, but that would be my first choice.

Places at care homes are assigned on need, and clearly a patient who has no place at a home at a particular time would necessarily take precedence over another patient who is already at a different home.

Hospitals are very sensitive to 'bed-blocking', even when, through their inability to cope properly with dementia patients, they have caused the problems that keep the patient there. My wife's pelvis was fractured at the hospital when she was on assessment and then they said they needed her bed and told me to find a care home somewhere so they could have their bed back. So, sensitive to 'bed-blocking', but not necessarily to patients or their relatives.

Regarding things going missing, well, it happens. There's a resident at Jan's home who has pefected her skills at lifting almost anything from anywhere in the confines of the home. Her room at one time was like Aladdin's cave, and whenever anything went missing, we always said - 'check her room first!'. At one time she had most of the kitchen in her room.

One of the things that dementia patients feel is that their life, money and possessions have been taken from them, so they often cling to anything they feel they can recognise - a glove, a teddy bear, a piece of toilet paper, etc. Once in a care home or hospital, they may not recognise which is their room, so they may just wander into another resident's room, see something that looks familiar, and walk off with it.

Clothes can go missing because all clothes in a home or on a ward probably go into a communal wash, and if not clearly labelled, will then get distributed wrongly. Also staff may simply not look at the labels anyway.

Sometimes staff can be temporary and not always up to the high standard one might home for. I bought Jan several bottles of expensive perfume over time, and very quickly they disappeared, and they were not on plain view, so it was calculated theft. I also give all members of staff at the home a small cash gift each Christmas and last year someone stole a bunch of those gifts. You just have to be careful and realise that hospitals, homes, and dementia patients are all vulnerable to this sort of thing. This year I will hand the gifts to each individual, even if I have to go in on night shift - I just didn't want to make such a big thing of it.

You have every right to ask that a search be made. Try going one step up the chain of command. Maybe put your request in writing, so you have a record.

Good luck!


Registered User
Jul 9, 2003
South Coast
Dear Nezumi

Have you tried just refusing to have your mother moved to a care home an hour's drive away, on the grounds that her well-being is best served by being able to have regular contact with her husband of 39 years, and this would be impractical as your father still works full-time? This is also especially important as she still knows everybody, and this, especially in view of her awareness of her condition, could lead to significant distress on her part if she couldn't see him regularly.

It may be worth putting this to your mother's consultant, social worker, or whoever is talking to you about this. Bed-blocking is one thing, but in this case the authorities are unable to offer an appropriate solution at present, so I would dig my heels in until they can.

Can Westminster not "buy back" the spare bed in the nearby care home from the neighbouring authority until another of their own spaces becomes free, which in the natural course of events is bound to happen? Ask about this, and if you are told it's not possible, ask why not, and who is responsible for this decision - and take it from there.

One thing you learn from this disease is that you have to dig your heels in and fight for your relative, and not to be intimidated because of someone's position, whether they are GPs, Consultants, Social Workers, CPNs or whatever!

Best wishes