1. kareng

    kareng Registered User

    Feb 5, 2004
    17
    Bristol
    Hi,

    I wanted to ask about people's experience of searching for residential care for relatives with dementia. It seems to me that if someone is not physically frail or in the later stages, it is very difficult to find good places that can care for them appropriately.

    My mum has been struggling in the mid-stages of dementia for about 18 months now. My dad was caring for her but he died in 2002.

    She still recognises people, she is capable of being very physically active (she's only 72) and she enjoys going out for walks, listening to music and generally being treated well - but she wouldn't be able to go out on her own and is not capable of 'self-starting' on any activity. Some days are worse and then she just doesn't respond much at all.

    I arranged for live-in carers for my mum for nearly a year, but we had so many problems getting good ones - and they all needed time off which was difficult to arrange as she was quite isolated in the middle of the country, and I was 4 hours drive away. So, after much agonising, I decided that the only real option was to find a good residential home for her.

    I saw about 20 homes. Some were just awful, some were nice but couldn't take her, some were OK but full of very frail people, some were full of people in the later stages of dementia. The one we found eventually is OK. It's a residential home with EMI beds - which is the thing that seems to be so rare. The staff are good, we can afford it, there is a garden and it's 25 minutes drive away for me. But I'm not really happy that she is getting enough stimulation, there are no dementia specialists there, it is rather cramped, I've had a few other worries and she says she doesn't like being there (of course she doesn't). So I've started looking around again - in a slightly different/wider area now.

    My question is - does anyone have any tips on how to make this search easier? I'm just dreading going through the whole thing again.

    And, if anyone has any experience of homes in the Bath and Bristol area or the South-West generally, I'd be really interested to hear (as a private message if you like).

    Thanks!
     
  2. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    Finding the right place is very distressing, partly because the 'professionals' - social workers and district nurses are not allowed to make any kind of recommendations. At a recent conference i heard Dementia Care Mapping explained. It's a tool used to measure the quality of care provided used in hospitals and possibly in some homes. I would ask them if they have heard of it and if so do they employ it.

    My Mum was in two homes in Canada, the first cared for her physical well being but left her in mute dispair, she literally turned her face to the wall and could never really make sense of where she was. It wasn't til my Dad died and we moved her to a small home near my brothers where she was provided with a much more stimulating but not threatening environment that I truely understood how malignant the first institution was. One peice of advice we received from several sources when looking at homes was that we might have to employ our own 'visitor' to help with stimulation and support for Mum. Seems like having a dog and barking yourself and would be financially impossible I would have thought but was apparently common practice in Canada. I think it might make relationships with staff in the care home challenging.

    Have you contacted your local Alzheimers groups. They may know where the best homes are.
    regards
    Jill
     
  3. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    .... But we, (the Alzheimer's Society,)are not able to recommend a home either.
    The only advice I can offer, is the importance of knowing someone who has, or knows of someone in care.
    Sometimes you can learn alot form asking the staff that work in any home about the home, and any other home.
    The turn over of staff in a care home is usually a good reflection, if staff come and go, then something may not be right.
    Basically just ask everyone that you can. Ask at the local hospital.
    Good luck
     
  4. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    I agree about the staff turn over. Care assistants are not well paid so only stay if they are respected and respect those they care for. I worked in one home that proudly displayed that it was the best presented home in the group that year, I'd far rather have had a sign saying we had the lowest turn over of staff - and residents!

    It also helps to visit at several times of day - are meal times digified with people being prompted to eat or helped rather than being fed by carers talking to each other and not looking at the residents?
    What are the home's laundry facilities - do they permit each residents clothes to be laundered and returned to them. What kind of activities and visits are arranged for residents.

    As to the Alzheimers Assoc not being able to recommend homes, I wonder why we don't have a certification process - the AA can set standard targets and award stars for a hotel and you're only staying overnight. Surely this is more important. Go further and why not start a hospice movement for people living with dementia? in any case the people you meet at local support groups are all individuals and you might benefit from their experience
    Best wishes
    Jill
     
  5. kareng

    kareng Registered User

    Feb 5, 2004
    17
    Bristol
    Interestingly enough, I did speak to my local Alzheimers Society on the subject of homes and a lady there was brilliantly helpful - printing off reams of information for me and getting lists from the local council - even if she couldn't recommend any home in particular. I immediately thought however, just as Jill says, wouldn't it be a good idea if the Alzheimers Society could have some kind of accreditation or star system? The Care Standards Reports may be useful, but they certainly don't tell anywhere near the whole story about a home, and certainly not - as far as I can see - if one is particularly looking for facilities for those with dementia. It would be wonderful to know that my mum was in a place which provided the kind of ethos and practically enabling environment that I am sure the Alzheimers Society would wish homes to do. Has this never been considered as an option?

    Maybe it is just the area I was looking in, but it strikes me that residential dementia care is sadly (and strangely, considering how many sufferers there are) overlooked by the care home business. Is that through ignorance, because it is too hard, or because there isn't enough money in it? As I understand it, rules have changed recently making it difficult for homes to keep up both EMI and non-EMI registered places. Are we perhaps in a time of transition?

    Thank you for all the replies - all good tips. You're right, Jill and Angela, it's from individuals that I may get the most useful information and general support. I will try out the support group.
     
  6. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    I strongly suspect it's because good quality care for people with dementia requires lots of people with the right approach and training which makes it even less profitable than normal care homes.
    Jill
     
  7. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    I looked for homes when my Mum had AD a few years ago and we couldn't find any which offered good quality care and stimulus. We attempted to provide volunteers to go in, but we found the level of understanding needed to work with dementia patients has to come from professional training. Now my husband has had to go into care at a younger age as he is suffering from vascular dementia and I have found that nothing has changed. At the moment he is in a continuing care ward and there appears to be no attempt to provide any occupation. Once a week a music therapist will work with him for a short period - she asked to carry on working with him as she works at the Day Centre he used to attend. She provides a much needed breath of fresh air and I hope he can continue to relate to her for some time to come. Of course, there aren't enough funds to provide her with more hours of work. He only went into hospital in December so I am still trying to adjust. I have just about enough energy to see that his basic physical and personal care are attended to, but I hope when I feel stronger to investigate any models of good practice which may be happening anywhere else in the country and fight to have these provided locally. Maybe if enough of us demand better care it will help the next generation of sufferers. Good luck with your search Karen. Jane
     
  8. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    re care homes

    My dad went into his EMI home in early January this year. It is private as we were worried about the potential for council homes closing, not saying there is no risk with private homes in this way but being blunt, the money they are paid is hopefully enough to keep them going! Besides the money we feel that Dad is getting excellent care, the home is dual registered so there are RGNs and RMN's there at all times, ok i am sure they have the same staffing problems and stress etc but we have no serious concerns so far, they all seem very caring, dad looks well looked after and we are ok with the situation as much as we can be. He is paying for most of it out of his pension so mum has lost a great deal but if it means he gets good quality care more than we could give, then so be it. EMI homes in cornwall are few and far between and we heard from the CPN's that the council homes are not that good, so this was really our only option, as trying to get community care here is a joke beyond belief, barring the HCA all the other personnel who saw Dad at home here for the past 2 years were not as supportive as we thought they could be. The HCA herself however was outstanding in her dedication to duty and caring nature. Good luck with your search, there are no easy options I'm afraid.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    My wife is at a private home where places are wholly funded by the PCT so in some ways it is the best of both worlds.

    I know the going rate for care assistants is around £5 per hour.

    I pay a jobbing gardener £12 per hour.....

    The care assistants I have come into contact with are like gold, for the most part, and its a lot harder work than gardening!
     

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