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Is dementia a diagnosis or a syndrome

Discussion in 'Researchers, students and professionals' started by larzst, Feb 16, 2015.

  1. larzst

    larzst Registered User

    Feb 16, 2015
    13
    We our having a debate on whether Dementia should not be classified as a diagnosis and should be classified more as a syndrome. We have decided to present our arguments at my placement and it would be great to recieve some people's opinion. It will be brilliant if some theories and law can be included aswell.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,771
    Female
    Dundee
    Good morning.

    I have no theories or law to present to you - too busy being a carer of someone who has dementia.

    This is the Alzheimer's Society factsheet on WHAT IS DEMENTIA.

    My husband was diagnosed almost 14 years ago. His diagnosis was that he had dementia of the Alzheimer's variety. As far as I can see Alzheimer's Disease is a neurological disorder. He has his diagnosis which was described as I've said. To be honest once we got the diagnosis I wasn't interested in whether it was a syndrome or a diagnosis. I just wanted to know what help he could get.
     
  3. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    #3 Sue J, Feb 16, 2015
    Last edited: Feb 16, 2015
    Hi Larzst

    Welcome to TP. It would be helpful to know who 'We' are and the 'placement' you write of? :) I think the ' theories and law' bit sounds like your homework;)
    Best wishes
    Sue

    I totally agree with Izzy.

    As a former HCP and researcher though I am interested too in the nature of the condition, disease, syndrome? as only that way will we find cures or preventative measures. Primarily though, sufferers and carers need practical help, proper support and understanding.
     
  4. larzst

    larzst Registered User

    Feb 16, 2015
    13
    Hi Sue,

    Sorry me and another student and we are on placement at reablement. We are doing individual research and I have a few theories and law's in mind. but, it would be nice to get some insight into what other people may put in place.
    Thank you
     
  5. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    #5 Sue J, Feb 16, 2015
    Last edited: Feb 16, 2015
    Thank you:)

    It is interesting that you are working in reablement. I would be very cautious in applying any rigid law or argument to theories of dementia. If you read TP you will get a wealth of understanding but primarily that 'When you have seen one person with dementia, you have seen one person with dementia' I.e. every sufferer is unique as is the presentation of the condition within them.

    Given the above syndrome may be a better way of describing dementia, caused by an underlying disease, as there are similar symptoms that can present.

    I'd be interested to know your 'laws and theories':)
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,496
    Female
    London
    I am sorry but I find a discussion about diagnosis or syndrome completely moot and pointless and I am certainly not going to provide you with theories if that's what you should be doing. Maybe you'd like to concentrate on how to effectively and practically help people living with dementia and their carers instead! Theories are no good for us, but seeing how a fat lot of good reablement were in our case, I can't say I am surprised. Sorry to sound harsh but we are all active carers here who have lived with the effects of this horrible disease for years and people debating theories aren't particularly helpful to us usually.
     
  7. mumbasi

    mumbasi Registered User

    Sep 1, 2013
    106
    Well Larzst I am pleased you posted as I had never heard of reablement, but have just looked it up an it seems very interesting.
    Sorry I can't help you with your question but all the best of luck.
     
  8. larzst

    larzst Registered User

    Feb 16, 2015
    13
    Thank you for that, I will definetly note it down. Well the law that we are looking to talk about is the Care Act 2014 which will be coming into practice on April the 1st at the moment and how we go about providing services and keeping people at the centre of our serices and also it now underpins duty for carers. It is all about keeping people involved as much as possible. At the moment, as the Care act is not inplace, we are still looking at the NHS and Community Care Act 1990 and No secrets 2000 but these will be replaced coming april.

    Also, human rights act 1998 and occasionally the mental health act 1983 and mental capacity act 2005 depending on the dementia and its stages.

    The theories that we have thought about is the social model of disability, which basically sees society as disabling people and not the person. So looking at ways of how to make it people friendly for people who have dementia and also looking at disengagement theory again how society may have made people feel that they need to isolate themselves from society and what ways we can prevent people from disengaging or feeling isolated.

     
  9. larzst

    larzst Registered User

    Feb 16, 2015
    13
    Everyone has there opinion and I understand that. I think it is important from a professional point of view to understand the difference especially when discussing with someone who has dementia and to also show that you have knowledge around it (I am sure you would not want someone turning up who has no knowledge). I came to this forum because it will help me to get an insight whether people do care or not about the difference between the way it is described. I have researched my theory and law and was only asking for other perspectives. This forum is only to give me additional information that I have not already noted down.

    Theories and Law are helpful in effectively aiding my practice as it gives me a wider insight. I am doing both practical and research which is why I am on placement.

     
  10. larzst

    larzst Registered User

    Feb 16, 2015
    13
    Hi,

    Thank you very much
     
  11. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    #11 Sue J, Feb 16, 2015
    Last edited: Feb 16, 2015
    Listening, is how you keep people at the centre of services. Once people are listened to and then understood then the theories can be written, not the other way around.

    Thank you for what you have written, my poor cognition, since the start of my own symptoms makes it difficult to follow but in my view the Professionals are making life more difficult for themselves and those they care for with theories. When I trained as a nurse we worked to a careplan, we learnt to identify a person's difficulties and then put in place solutions to solve/ease the problems. I visit HCP, the ones I can relate to, are those who help me feel less isolated and not part of society, are those who listen, attempt to understand my need and give me real practical help and support. The others, who are forced to work to a tick box computer screen make me feel less of a person, individual, make me angry and frustrated.

    Theories can be OK but trying to apply a theory when you have vast swathes of people struggling with dementia is I think like putting the cart before the horse, no doubt though this is what your establishement demands of you so you have limited 'choice'

    All the best:)

    I understand Beate's response Larszt as primarily TP is contributed to by carers and sufferers who support and understand each other with the daily struggles of dementia. If you read TP very often we feel totally misunderstood by the professionals. Also the draining nature of living with dementia doesn't leave much time or energy discussing theories. You will find many people on here who feel and have been abandoned by Memory Clinics, services and understandably therefore have little time for professionals, the group that has left them feeling isolated.
     
  12. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    I don't even understand the question:(
    You get diagnosed with something be it dementia, a broken leg or measles, the word means identifying (by name) the nature of ailment in my book, a syndrome is "a set of medical signs and symptoms that are correlated with each other and, often, with a specific disease" (according to wiki). So as far as I can see the syndrome leads to the diagnosis, strange because syndrome just seems to be a synonym for symptoms no what I thought it meant.
    I've never heard of "reablement" before but it looks like a lot of local councils are using it, 6 weeks free then you have to pay for it, relearning skills you may have lost and not available to people with dementia are the 3 constants I picked up on, has anyone come across this before, it's a new one on me.
    K
     
  13. Beate

    Beate Registered User

    May 21, 2014
    11,496
    Female
    London
    We were referred to reablement. It was completely useless. Someone came inspecting the house and suggesting such clever things like calendars on the wall and notes on the kitchen cupboards. And asked what hobbies he had. I had to fight to get him referred to longer term services which is where he should have been in the first place.
     
  14. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    The thing that concerns me with reablement and dementia is that reablement is about getting people to 'get back to being able' . Dementia is a degenerative condition.

    In five years since my symptoms began I am having to learn, accept I will never get back the skills , abilities I had but need support and understanding to adapt to a totally new, different way of living. If people want me to achieve reablement goals they will be disappointed and I will feel more angry and frustrated.
     
  15. Beate

    Beate Registered User

    May 21, 2014
    11,496
    Female
    London
    Precisely. All they can do is offer pointers on how to make living with it easier. Then after six weeks this glorious input ends and you are left with nothing at all.
     
  16. larzst

    larzst Registered User

    Feb 16, 2015
    13
    hmmm, unsure as to why that is all they did. Usually a reablment social worker will not assess the house as that would be an OT's job and it will be a lot more than just putting calenders up. A social worker from a reablement team would usually check how they have been getting on with the carers that have been put in place and assess whether to close the case or transfer them to long term (locality) adult social care services. I agree aswell that is where he should be also but, usually even if reablement is not going to work to completely getting a person back to baseline, it is also to make sure that they have a smooth transition into long term services. I hope that helps

     
  17. larzst

    larzst Registered User

    Feb 16, 2015
    13
    That is not suppose to be the case. Reablement will never leave you without any services unless you have returned back to baseline.

     
  18. Beate

    Beate Registered User

    May 21, 2014
    11,496
    Female
    London
    #18 Beate, Feb 16, 2015
    Last edited: Feb 16, 2015
    That's the difference between theory and practice then!
     
  19. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,852
    Suffolk
    The first thing all medics and those researching dementia should do is to get their hands dirty - go and work with people with dementia. Understand fully with what you are dealing. I believe we are all tired with so-called professionals who tell us what to do. My latest example is respite. They put an alarm to press on a cord round his neck and told him to press it when he wanted help. He didn't understand. Result was he has declined greatly and become incontinent.
    As has been said, dementia is not a disease that has recovery as one of its options, so reablement is only on the cards in the very short term.
    Carers need less bureaucracy, more understanding, and more help and care for the cared-for, that doesn't cost all your money. It is, after all, a disease that will kill, always.
     
  20. nitram

    nitram Registered User

    Apr 6, 2011
    18,389
    Male
    North Manchester
    #20 nitram, Feb 16, 2015
    Last edited: Feb 16, 2015
    "Reablement will never leave you without any services unless you have returned back to baseline."

    After 6 weeks they just start charging you according to the local implementation of >>>THIS DOCUMENT<<<

    Also how do the people providing the service always know the baseline, the person concerned may not have been on their radar before admission to hospital, or is baseline really defined 'Now OK, no more help needed'?

    EDIT
    The free 6 weeks may not even happen
    http://www.communitycare.co.uk/2010...ils-illegally-charge-for-reablement-services/
     

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