dementia awareness courses for families of dementia sufferers

Discussion in 'ARCHIVE FORUM: Support discussions' started by inkypink, Jan 3, 2008.

  1. inkypink

    inkypink Registered User

    Jan 2, 2008
    i only joined this forum last night but from what i've read so far quite alot of people who care for family members with dementia are really in the dark about how this illness progresses & how it can affect the behaviour of the sufferer.
    i know there are leaflets & web sites about that give out useful info but it doesn't prepare them for the reality of what comes.
    i am a senior carer in an EMI home for older people with dementia & all our staff have had dementia training so we know mostly what to expect & why behaviour can change from day to day but i really feel for our residents families when they visit & their mother/father/husband/wife tells them to 'f' off or doesn't recognise them or they are running down the corridor taking off their clothes.nothing can prepare you for that,no leaflet or web site.
    it would be great if,when there is a diagnosis of dementia that families could be offered a short 1 day course on what to expect & learn more about this awful illness.
    i know when i started my job i was told the type of residents i would be caring for but as most people think,i assumed dementia was something a little old lady got when she was too old to remember things as you know,how wrong was i!!!!
    there are times when i get home from work so emotionally drained that i cry & my job isn't 1 that i can leave at work & forget about when i'm home so i can only imagine what it's like for families of sufferers not really knowing whats round the corner & how they'l cope with it.
    my hat off to you all & my best wishes....
  2. janetruth

    janetruth Registered User

    Mar 20, 2007
    Hello Inkypink and welcome to TP.

    It is thanks to people like yourself, that we can trust our loved ones to, you have my full admiration.

    My Mum came to live with us in Sept 2006 and I now find myself having to admit defeat.
    The 24/7 care has taken its toll and I am at breaking point.
    Mums very strange behaviour and ramblings were at times enough to send any sane person bonkers.

    Nearly 3 months ago there was a dramatic decline and Mum now spends most her time in bed or on her chair, oblovious to the here and now. When (and that is very rare theae days)Mum has a lucid moment, we make the most of it.

    Mum will be going into NH VERY soon and I hope her carers will be as dedicated as you, I also hope to be of some help towards my Mums care while she is there.
    When you work with people it is hard to switch off, I worked as a carer some years ago, but it could never have prepared me for taking care of my AZ Mum.

    Take Care
    Love Janetruth x
  3. Scoop

    Scoop Registered User

    Nov 20, 2006
    Sound like a good idea to me, would be quite scarey for some at the beginning to see what's coming but I'm sure for me playing the supporting role to my Dad's main carer ( My Mum) that it could help no end. We have been living with it for a year since diagnosis but a good 18 months probably before that to some extent, every day throws up something new and more bizarre/shocking now.

    You can only read so much....
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi inkypink
    Welcome to TP.
    a very good idea but the problem would be cost.
    I have a friend who runs courses on Dementia,she is qualified to Alzheimer's society standards.
    The big problem that she has is getting N Homes to pay for training.
    The root of the problem goes back to training of doctors ,nurses and all health professionals.
    To move forward we need to implement a "dementia " slot into all trainingg programmes.
  5. ang64

    ang64 Registered User

    Dec 27, 2007
    i also agree this would be great i dont know how many times i have said to myself i wish i knew more and what to expect from this terrible illness.i am my dads only family and i find it rally hard to cope with but maybe if i understood the illness it would relieve the pressure a bit that i feel.
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    #6 Skye, Jan 3, 2008
    Last edited: Jan 3, 2008
    Hi Inkypink, and welcome.

    You're right, training is very useful, though nothing can prepare you for the realities of 24/7 caring for a dementia sufferer.

    Our local branch of Alzheimer Scotland rund a training course regularly, when they have enough new carers. It's run over two Mondays, and they have speakers covering all aspects, including money and legal issues. As everyone who is diagnosed is referred to Alzscot, everyone has the opportunity to take part. Care cover is provided if needed. I found it very helpful.

    We also run training sessions for new doctors and hospital nurses on how to handle dementia patients, and that's certainly bearing fruit in our local hospital. The main problem is with the senior consultants, and I guess we'll never shift them. Hopefully the younger ones will be more aware.

    My husband is now in the later stages in an EMI unit, and my problems there are with the staff nurses who have not had EMI training. I don't know how we get to them as they're not NHS, so the care home organisation would have to fund the training. The carers on the whole are excellent, and the charge nurse is RMN, so no problems there.

    I agree with Norman. As someone said, 'education, education, education'.

    PS TP is the best source of information and support around. Perhaps all care homes should have the web address prominently displayed and pointed out to families.
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    AS do have leaflets with a tear off card that give the web address. I have given some to my mum's nursing home and they took some for the sister home on the same site. I keep meaning to take some to my GP surgery also. The last lot I had were sentto me by the lovely Tash, who has sadly now left for pastures new, so not sure who would be the best person to contact if you would like some now. I am sure I could find out though.
  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    So sorry to hear this, Tash is indeed lovely.

    Yes, the leaflets would be a good idea, thanks.:)

    PS Originally typed 'food idea'. I don't suppose they're edible?
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I suppose anything that raises awareness of dementia is a good thing, but I'm not sure how much use a training course would be to family members. For a start, not everyone is going to progress at the same rate or necessarily down the same path as others - do you set up a course assuming worst case scenarios or best? Secondly, unless it something sudden like a stroke, by the time families get to the diagnosis they've already go more than an inkling of what is going on so and training course at that point would I think be a trifle patronizing. Thirdly when you've received this diagnosis, most people are in so much shock that a) they can't take in much information, b) they can't remember it, c) they wouldn't believe it and d) this may be so frightening that it wouldn't be so much about being warned as putting them into a situation where they are constantly waiting for disaster. In other words, I think it could back-fire.
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #10 Margarita, Jan 3, 2008
    Last edited: Jan 3, 2008
    I must say that I would go on the same course that is offered to staff to have dementia training .

    I don't think that it would if
    it was be put in place for the carer to have the opportunity to go on a course like that when and if they ready.

    I don't know how they train staff in dementia training , but I would of like to have learn how to handle a situation , about moods , paranoid , sleep , washing , delusions .

    If I never had the internet I would be clueless . with the amount of books I brought on AZ , I could of paid to go on one of those courses , but the Alzheimer's society only offer it to Care home Group booking , if your lucky and care home your love one in , they may offer you the course . My mother at home with me .

    Those courses are around £150 anyway . I suppose the Carer grant could be spent on the course .

    Just all seem a money making market , while the stay at home carer loses out . How would you get on on anyway as its an NVQ so has to be work placement ?
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I agree with the when and if they are ready part. I just wonder how one determines that. It's just there seems to be too many variations in deterioration to make this practicable. I suppose you could cover the most "likely" things - incontinence, loss of mobility, refusal to eat, but if someone had told me upfront that my mother would be verbally abusive I would have rejected that out of hand, and I would have been right to - she never was. However, I know some people are, so it would be equally wrong to leave it out. Also, of course, a skill not used may be a skill lost - if you were told how to handle a specific behaviour (and that in itself could be iffy - handling techniques that work for one person might not work for another) and that behaviour didn't come up for several years, would you remember what to do? Well you might, but I'm not sure that it would stay in my mind.

    And then, of course, we're back to who would run these courses. Without meaning to denigrate professionals, everyone with dementia presents differently and we all become expert in managing our own small part of dementia world - by the time one is ready for this type of training I suspect one knows more about how to manage ones own particular caree than anyone on the outside.
  12. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    I sometimes forget how lucky I am - as soon as mum was diagnosed I was offered a place on a carer's training course run by my Local Age Concern group - then again I am lucky to live in an area where the local Primary Care Trust work in partnership with the local branch of Age Concern supporting both dementia sufferers and their carers ..... I recall the course was over six sessions - including topics like 'Managing Challenging Behaviour', 'Medications' etc ...... sounded wonderful ....

    The downside was that like many support groups it was run at specific times during the day (I don't care 24/7 so don't have issues around who does the caring when I'm not there ...... but I don't have indefinite leave from work either for such 'luxuries') ..... My only training has had to be 'on-line' - sometimes at ridiculous hours of the night/morning when I can't sleep or just at an odd times during the day when I can steal time from other responsibilities ...... but know there is someone, somewhere on some forum (or simply looking up some of the AS Fact Sheets) who can help with a problem that is vexing me .............

    I wonder had I somehow managed to attend that course 18 months ago - how much good it might have done? - Yes I might have been 'prepared' (as in 'always expect the unexpected' prepared) - but I would still be foraging around TP and the AS website seeking support and information now (often without directly asking) for help as new and yet more unexpected situations arise ...... and of course, as new and perhaps unexpected ideas arise through peer support ......

    It's a great idea, Inkypink - perhaps one AS might consider as a CBT (Computer-Based-Training exercise) as some amalgamation of factsheets ... with the back up that (mindful especially of Jennifer's comments) there is support on line should someone be confronted with more than they can handle at any one time ......

    Love, Karen, x
  13. inkypink

    inkypink Registered User

    Jan 2, 2008
    i think some people have miss understood the training concept i had in mind.its more awareness than anything else,its all about the reasoning & understanding of how the illness can progress more than the training of how to deal with certain behaviour patterns etc.
    i've been put through many courses on how to deal with these problems but the dementia course is all about why people can get dementia & what happens to the brain to make sufferers behave the way they can & the different forms of the illness.
    i had a refresher course just before xmas & we watched a short film starring thora hurd as a dementia sufferer i can't remember what its called but i'll ask my manager & see if its available anywhere.
    i'm lucky i work for an organisation who have just won an award for their excellence in staff training.the lady who does our dementia course is high up in the organisation & she has had many years experience both through working with dementia & also her father had the illness for many years before he passed a few years ago.
    as someone mentioned,every single sufferer is different but it is proven that certain behaviour patterns go with the type of dementia the sufferer has.
    as a care worker its difficult for me when i have to explain to a family member that their loved one has just punched another resident or that they have smashed a window because the family seem to go into denial. 'my mother wouldn't do such a thing!'
    'must of been provoked'. it appears the family hasn't been told this behaviour can become quite normal.
    we get new residents coming in who's care programme says that they don't sleep,can be aggressive,incontinent,rude etc but because of what our staff know & the approach they have none of this behaviour surfaces.
    awareness & expectation is a good thing even in small doses.
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I don't disagree with you Inkypink - I just think there are very very few people who will accept that their spouse, their parent will have these unexpected behaviours until they're actually confronted with them, and quite possibly, not even then. I think the shock, the lack of acceptance that you see is not necessarily because the people in question have not been told that this can happen but that they can't accept that it has happened to their (as opposed to someone else's) loved one. And to be honest, I doubt any number of training courses will make a blind bit of difference. We have several members who are "professionals" in the field, but who have indicated that when it's your loved one that's exhibiting the signs, training goes out the window.
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Actually I'd take issue with that - proof is a very strong word in this context.

    I'm sorry but I don't think this is to do with lack of knowledge or awareness - this is about not wanting to deal with the unbearable. None of us want to accept that our loved one will behave in these atypical ways, and telling us in advance that they might is well-meaning but probably futile. Do you really think that if you tell distraught daughter "your mother just thumped Mr B in the face" that the response will ever be a calm "Oh yes, I read that that might happen"? Even if we know it, we don't want to accept it.
  16. inkypink

    inkypink Registered User

    Jan 2, 2008
    hi jennifer,
    i do understand what you are trying to point out & i do agree with. i can't even begin to think how i would react if it happened to one of my parents.
    i'm only going by the experiences i've had & the helplessness i feel when i get a family member calling me at work or breaking down in front of me because they just didn't realise how bad things could get or even how long a person can live & suffer with this illness.
    its pure torture for for the sufferer but also torture for the family not knowing what may be around the corner.
    what i've suggested at the home i work in is that there should be a family day where as who ever wants to go can sit together & chat & discuss their worries & experiences & for the home manager to be there to offer advice & support.
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Now that would be a miracle, because I think the jury is out on that one - no consultant has ever been able to convince me they actually know themselves.

    My feeling is that certainly information on behavioural issues and how to deal with them, binning all worries about lying, strategies for avoiding common problems, a glimpse inside the world of someone with dementia, plus practical caring issues - all of that would be great.

    Of course the time at which the carer would most need that would be when they could least afford the time, because of caring duties. I don't know how many are like I was, but I didn't really want to know the enormity of the challenges we would face; I simply wanted to sort each one as it occurred.

    Knowledge about dealing with the various agencies, care costs, support that might - or might not - be available.... that would be good.

    On paper it is all great, though I'm inclined to think that the professionals are those most in need of all this information because, with the exception of the hands-on care staff at good care homes, I have never been impressed with dementia knowledge of any of those who are supposed to know.

    Are there pilots of such a course around, together with details of what those attending might have said afterwards in relation to effectiveness?

    Certainly there needs to be something, and you have raised a useful subject for discussion. :)
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    inkypink, I think you may be thinking of Alan Bennett's Talking Heads series, televised in 1988. I remember the Thora Hird one very clearly, also one starring Patricia Routledge as as office worker who thought she was very popular, until she developed cancer. It was a brilliant series, now available on DVD here:

    In a change of subject, what I found most useful in the Alzcsot training course I did, was that each speaker spoke for perhaps a quarter of an hour, and the rest of the hour was question and
    answer, and general comment. I'm afraid I don't remember much of the talks, but I can still see the other members of the group, and hear the accounts of their experiences. I learned a lot from them.

    In the same way, when we did the Dementia Champions course, the nurses said that what struck a chord was the day we carers talked about our experiences.

    I do think these courses are useful, even though we all have different experiences. At least we're not going into it totally blind.
  19. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    I wouldn't advise eating them Hazel, but take no responsibility should you choose to do so! :D I will see what I can find out about getting some leaflets sent out and get back to you.
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thanks, Brenda.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.