1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

does anyone want to give me some feedback???

Discussion in 'Researchers, students and professionals' started by kelly, Sep 20, 2005.

  1. kelly

    kelly Registered User

    Sep 20, 2005
    hi everyone!! my name is kelly and I have worked with individuals with dementia and alzheimers disease for quite some time. During the course of my work I have noticed time and time again that there appears to be a major gap within local communities with regards to services and facilities which meet the social needs of people with these conditions. I am aware that the alzheimers society are fantastic !!!but I was looking to get peoples ideas on how they feel their local communities could best help them to persue their social interests in a way that would promote their inclusion as part of the wider community. At present I feel that people with dementia or alzheimers are offered day centre placements as a way to meet their social needs but what about individuals who are very active?? or who want to undertake an activity or passtime in the evenings what is there for them?? is having day centres which cater for individuals with these conditions only the best way to move forward to promote awareness and peoples right to be included???

    I know that there is still quite a bit to go in raising awareness and wiping out predjudices but I would like people to give me any kind of feedback on what they would ideally like to see happen.
  2. Anya

    Anya Registered User

    Sep 11, 2005
    East Sussex

    Hi Kelly, I suggested that my husband might go to a "memory club" but my GP said that as my husband is 69, very active, and relatively healthy, just "different" that he'd feel "out of it". I think raising awareness in the community is a good place to start, when I told my husband's relatives, they greeted the news with shock, horror, offers of help and then they saw him again since the diagnosis and saw that he was just him, only "different" and sometimes a bit "strange", but still very much their brother.Now they think we his family have "got it wrong" and he has been mis-diagnosed. All VaD and AD sufferers are individual and unique, and it seems there is no one "story", only general ones and everbod's uniqueness. So some media awareness would help stress this point. It can happen to anybody !
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005


    Can I just put out there too that it would be really great once those with dementia are in a home permanently and can no longer really interact it would be WONDERFUL if the people who came in to do activities with those who still are able to interact, could spare 5 minutes just to sit and chat with those that don't appear to respond, touch them on the arm, smile at them, try to catch their eye.

    At the home my father lives in they have activities like nail painting, games, ball throwing, music and sing-alongs but unfortunately my Dad who can't do any of these things just sits in a corner ignored most of the time.

    You appear to be asking more about early stage activities, but as I don't know about such things as Dad lived with his family until recently, I just wanted to cover the above. Apologies if I am right off track.
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    could spare 5 minutes just to sit and chat with those that don't appear to respond, touch them on the arm, smile at them, try to catch their eye.

    Hey Nat, you are clearly mega perceptive.

    At Jan's home they run all sorts of activities, most of which go totally over the heads of most residents, but they do vary each day.

    Jan is in no position to even understand these things are going on, nor are some others. But just for someone to touch them on the shoulder and address them by name and just exchange some niceties - "lovely day today" [even if not], "you're looking good today" [even if they aren't], "how was lunch", etc etc - is an acknowledgement to them that they are not forgotten.

    The hours in a care home must seem endless.
  5. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    It was suggested that my husband went once a week to a club. It was supposedly for a small group of people at the same sort of stage as himself, mostly men, and I thought they could all tell each other the same stories over and over again and no one would remember hearing them before, so they would have a whale of a time.

    He hated it. Said the other people were nuts, and 'the room was very small' so he refused to go back.

    But what he does much appreciate is weekly visits by two AS befrienders, who come and chat, or will take him out for a haircut or whatever. He enjoys it, and it takes the pressure off me, too. They are wonderful, and both are such nice and interesting people I have to remind myself to clear off and not join in, as it is not me they are visiting.
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Kelly,
    Although a very clever man with many interests, my husband has never been a DIY or Quiz enthusiast, nor did he belong to clubs or visit the pub. When AD crept up on us, his world narrowed gradually, as he became more and more dependent. A Day Centre did not suit his needs, but he would have benefitted greatly from some social stimulation, and variety to his days. He was (still is) physically fit, and I think he would have enjoyed being befriended by members of a (gentle) rambling group, senior citizens who use a regular walk as much to socialise as for exercise. I know these groups exist, but sadly, I never managed to arrange this for him. They could easily have taken it in turns to chat to him (and listen to his rambling, sometimes repetitive stories) ......

    This is just a suggestion based on personal experience. Hope it helps.
  7. kelly

    kelly Registered User

    Sep 20, 2005
    hi everyone,
    I would like to thank everyone who responded to my message. I can see from some of the responses that I had that there is a real need to raise awareness. I agree totally that the social needs of people who reside within nursing/ residential facilities are as equally important as the needs of people who may be in the early stages of their condition and who can communicate their needs to others. I feel that a big aspect of ensuring that all individuals are afforded their right to have their social needs met is information and training as the effectiveness of persuing any form of social interests or activities depends upon the level of understanding of others. This in my view can only be achieved through raising the level of awareness within the local communities and through ensuring that all those who work with individuals with dementia or alzheimers disease are trained on how best to interact with them and to help them achieve their potential. The level of potential for each person will of course be different depending on the stage of their condition. I feel that it is important that people think about shortfalls within current promotion that is out there to raise awareness and to think about how best we can tackle the task of acceptance and understanding across all areas so that everyone can be included in some way.
    I would really appreciate any feedback that people have to offer. I am going to put all of the ideas and views, along with other peices of research into one final document which hopefully will reach the ears of those who can help us achieve real change!!
  8. Dave W

    Dave W Registered User

    Jul 3, 2005
    A very individual matter

    Just to second an earlier comment, but the sufferers are all individuals and the idea of a single solution seems a little nonsensical.

    My mother has still - as far as I know - not been given an official diagnosis (although I did note that her CPN used the term vascular dementia in conversation with one of her neighbours recently - nice to be the last to know, eh?) - but as various people have kindly suggested day centres and the like, all I can say is the thought of them sends her into a defiant, belligerent rage. Although she's beginning to fail at it, she wants to be independent. Stubbornly.

    Given that denial is a common factor in early stages, I can't help but think that a whole new approach is needed - one much more along the lines of the AS befriender (please, please, tell us more about this!!!!!!!!), but without the acronym attached. And possibly without the 'befriender' attached too. How does offering someone in denial something with all the wrong labels all over it help? Or help those trying to help them already - it just gives everyone anextra battle to fight, when there are too many already.

    Just someone kind, friendly and caring to provide lowkey companionship (I'm sure my mother isn't the only person living alone?) unobtrusively, to go shopping *with* (not *for*), to encourage upkeep of activites (keeping the garden going, walking the dog more often, and so on).

    Not only does independence and morale get maintained as long as possible, but there must surely be some lement of 'use it or lose it' (to adopt a horrid phrase).

    If we can having 'teaching assistants', can we not extend the voluntary sector - with qualified training and strict safeguards - into this arena too. Although supervision of sufferers is vitally important, there seems to be no concept of providing companionship. Given the age profile of many sufferers, this seems an extraordinary gap in provision.

    Having just spent a wretched weekend of a home visit having been woken by Surrey Police (she'd called them Friday night having called at a neighbours complaining their were people in the house - which there weren't - she then wouldn't let them in on Saturday morning when they called to see if she was ok. So they phoned the CPN emergency number. And the care agency, as she wouldn't let the care worker in either, but did let the care manager in later on as if nothing else was wrong. During which period they all, naturally phoned me, while I sat in Hampshire trying to work out how I was going to get there as I don't drive), my experience is of trying to help someone who isn't grateful for me trying anyway, but who isn't yet bad enough to fit any of the 'boxes' so that various agencies can then tick boxes to identify a match of patient to service and then provide something.

    (The fact that absolutely everything available seems to be means tested really winds me up intensely to, but let's tackle one point at a time ...)

    What the various agencies don't seem to be able to do is look at the whole person and say 'this person needs a, b and c: how can we provide it?'.

    Surely that would be better than 'we can only offer a, f and l: does she need any of these yet?'.

    And apologies for rambling - this has been a very gruelling weekend.
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    A new paradigm

    Here, here Dave I agree with your sentiments, people will probably tell you its impossible financially to set up that kind of individual care, but don't accept that excuse when we in western society say we are all about human rights. Current nursing home standards do not often match up to what the rest of society expects as fundamental human rights. We need to push the boudaries on what society accepts as an acceptable standard of care for dementia suffers, create a new paradigm.
  10. sarah crombie

    sarah crombie Registered User

    Aug 1, 2005
    SPECAL approach

    The SPECAL approach in Burford, Oxfordshire seems the most intelligent & innovative approach - see their website if you google SPECAL
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Planned chaos activities

    Something interesting I noticed in my Dad's home the other day. Although few and far between, the home he is in does 'try', and sometimes they arrange activities for the residents in Dad's locked up section. Thank-god or else they would all die of boredom what with no ability to comprehend tv, or read and very few visitors (lately I'm visiting the whole lot of them not just my Dad, they're all hanging out some attention!).

    Anyway on Monday (I think) I went to visit Dad, just when one of teh activity coordinators was coming in and she asked if Dad would like a milkshake because they were going to be making milkshakes today. Amused I said, absolutely and then Dad and I sat down to watch the whole process (not that he appears to pay that much attention or understand, take an interest in what others are doing unless they are directly interacting with him). The activity coordinator got 5 of the inmates to sit around the table where she set up the blender, the ice-cream and flavouring and I thought to myself, well its not absolutely gripping stuff, but at least its something... And then she prcoeeded to chat to them all as she made the milkshakes. All went well, Dad fell asleep leaning on my head despite the blender noise and the milkshake was made, the coordinator went to take the jug off the blender but unscrewed the wrong thing and WHOOSH! the whole lot came out the bottom, over the table, onto the floor, splattering up the walls, a lovely big mess. Of course the coordinator was mortified, but you know what?

    I think she couldn't have planned it better, it was amusing, it was wet, it was messy, it was a person without dementia making a fool of herself, it started oohs and aahhhs and laughter and chatter. I thought to myself, this is what they need a bit of occasional planned chaos! Something to chat about, something to laugh about to others or oneself, something to gossip about (did you see that lady, she is sooo hopeless in the kitchen). Anyway it made my day and gave a chance for some of the inmates to feel like they were the experts, one of them helped mop up as well, (though the carer freaked when he decided to use the mop on the table as well!).

    I know, i know its sounds as boring as hell, but you don't know what boring really is until you've spent some time in those places!

    One final idea I thought of, is when talking to families who visit, set up a secret signal, or a certain time frame, with them if they want it so that they can leave easily when they are having trouble leaving. For example, make a question such as 'so have you seen the latest movie?' that if directed at the nurse/carers means, 'can you come distract Dad, so I can go?'. Its so much easier to say, 'well I'd better be off now', if someone comes over and starts fussing with him first.
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I too have a little walk around some of the other residents at Jan's home, on the way in and on the way out. I know that some other visitors do the same for Jan, so it is sort of visiting by proxy.

    I have a harem now, as most of the residents are female. I vary the words I use according to the person, but try and use the same form of address each time for each one.

    So for one it is "Hello [name] how are you today. I like your cardigan."

    for another it is "has [husbands name] been in yet? are you keeping an eye on him?"

    another: "oh I do like your hat. How's you doin' girl?" [she always wears a hat, and comes from the West Indies] Once I got too familiar and asked her if she wanted some ganja and she clouted me.

    To [name] I am a doctor, so I always tell her how well she looks then say I'm off to look at the other patients now.

    and so on.

    They all respond to the attention and they are such dear sweet people.

    Some things we do we could never ever have predicted a few years ago!!!! ;)
  13. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Nat,

    I hope that there were extra ingredients for more milkshakes afterwards! :eek: It sounds like quite an eventful visit. I've been thinking quite a bit about the activity thing, especially now that Winter is coming (over in UK anyway - its alright for some!) I know what you mean about Homes can be boring. I realise that people with dementia need a safe, quiet atmosphere but there has to be some stimulus every now and then.

    When I'm looking around for things to amuse Dad, I often avoid anything that is noisy or would startle in any way. Dad, and some of the other residents, don't take too kindly to being shocked. Yet, there's often a surprisingly good reaction, like the one you experienced to a sudden 'happening'. It's difficult to plan these things. Glad you had a good visit and hope the co-ordinator wasn't detered from making the shakes again!
  14. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    #14 Norman, Oct 1, 2005
    Last edited: Oct 1, 2005
    It gives great pleasure and hope for the future care of Dementia patients when I read how conditions in "homes "have improved.
    I recall carrying out visiting inspections to homes ,and there was no activity of any sort,in most of them
    Poor souls sat,sleeping mainly,bored and in my opinion unhappy.
    This was also pre Aricept and the other medications now available,there was no traetment available at all. before these drugs.
    I didn't really mean to raise this point ,I tell lies as well, but how can NICE stop these treatments £2.50 a day and revert back to the bad old days.
    Care for Dementia has made some progress and it must not be allowed to slip back again.
    Norman :mad:

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