Living well with dementia.

Discussion in 'I have a partner with dementia' started by gringo, Dec 21, 2015.

  1. gringo

    gringo Registered User

    Feb 1, 2012
    1,189
    UK.
    “………Alzheimer's Society focuses both on supporting people to live well with dementia, as well as investing in world-class research…….”

    This quote is from the comment by the Chief Executive of Alzheimer’s Society on Jimmy Hill’s death.
    I’ve lived with dementia for some ten years. I can’t begin to imagine how A.S. could support me to live well with this disease. In fact I don’t see how that could be achieved. Having said that, the provision of Talking Point has my heartfelt gratitude. The only support I have ever had, has been from members of this forum, which has enabled me to get through one day, and one night, at a time. That’s as much as I look for. I don’t expect that I shall, or could, 'live well' with dementia. That’s just meaningless jargon, and it makes me cross.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,746
    Kent
    I agree. I think it`s unfortunate and even patronising . It can imply those who do not `live well` are somehow failing.

    You only have to read some of the heartbreaking posts on TP to know.
     
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,523
    Female
    England
    'Living well' does not sit comfortably with me either.
     
  4. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,426
    Male
    Cornwall
    #4 Countryboy, Dec 21, 2015
    Last edited: Dec 21, 2015
    I’m sorry its make you cross however as a person living with Dementia for 16 years I would like to reply , We see all over the media news- papers TV programs TV adverts what we should do to support those suffering with dementia in care homes and those who are in the later stages being cared for at home, but there are hundreds and thousands of younger people with a diagnoses of dementia who want to Continue in their employment Continue Driving a Vehicle Continue going on holidays hence living with dementia , unfortunately they have No support no one advises them how to Challenge their employers how to challenge DVLA how to Challenge the large increase in Travel Insurance premiums The Person living with Dementia has to Challenge & go into Battle for this their self or with help of family Personally I think it’s time the organizations who claim to support living well with dementia help them to do exactly that I wait with bated breath

    ps I don't know what was said about Jimmy Hill
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,729
    Female
    London
    The fact that not everyone lives well with it doesn't mean nobody does. I dare say my OH lives as well with it as can be expected and he's still a happy soul. I also see a lot of people at the AS gatherings and some of the holidays we go to that seem to live well with it. It's not something we can always influence as it depends on the individual's symptoms that make some more tormented than others, but the Alzheimer's Society has every right to offer their support so people have as good a quality of life as possible.
     
  6. gringo

    gringo Registered User

    Feb 1, 2012
    1,189
    UK.

    Of course they do, and good luck to them and anyone who can benefit from it. But that’s not what the phrase, I quoted, said. While I accept that they could offer me help ‘to live as well as can be expected’. No help that they or anyone else could offer would ever enable me to ‘live well’ with dementia.
    The phrase they use is, in my view, as close to an oxymoron as you can get. This is not just matter of semantics. Giving the impression that, with a little help, one can ‘live well’ with dementia reinforces the common view that dementia is just a few dear old folk with dodgy memories.
    As it happens in ten years they’ve offered me nothing at all. Except, as I have said, ‘Talking Point’. I’m still grateful, but don’t see why I should ignore them talking nonsense.
     
  7. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,426
    Male
    Cornwall
    Believe me if your diagnosed with dementia it's a mine field to deal with the bureaucratic rubbish you have to battle against so if the Alzheimer's Society can put together a team to give some help and advise to deal with them it would be great bit late for me I had to fight them on my own
     
  8. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    My husband and I lived reasonably well with his dementia for many years.

    But not because any outside agencies helped us to do so.

    We were just very very lucky that his dementia progressed very slowly, and changes were absorbed equally slowly, and I was able to take more responsibilities for everything, very slowly.

    He has never suffered from challenging behaviour, and for this I am so thankful, because I know from reading TP how catastrophic this can be to lives, and how little help there is at point of need.

    So I too do not feel comfortable to be told that it is possible to "live well with dementia" as if it is something within everyone's power, because it jolly well isn't.

    In a dementia-friendly society, where people live well with dementia, there really isn't much of a problem, is there, children?
     
  9. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,523
    Female
    England
    Sleepless, you have it in one. Very well put.
     
  10. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Tony, thank you for sharing this with us, you are absolutely right - younger people with dementia definitely do need to be better supported and organisations do need to move this up the agenda xxxxxxxxxxxxxxxx
     
  11. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Hi my name is San fairy ann and I'm not living well with dementia does this mean i'm weaker than those who are? I also have heart and liver disease and chronic pain from a crumbling spine......not doing great at living well with those things either. Each of us is different so the living well can't apply to all of us. Sometimes I have jelly for my breakfast and I don't feel guilty about it ☺
     
  12. Lawson58

    Lawson58 Registered User

    And just maybe, some people live well 'in spite of' having dementia, rather than living with it.

    OH has just had a check up with the geriatrician who was amazed at his continuing condition. He has just been awarded Most Improved Player at his Bridge Club which has absolutely delighted him. It is mainly because he is now playing with partners that he gets along with but he really looks forward to it. It doesn't matter that he can't use a mobile phone, that he doesn't stop talking, that he repeats himself constantly, that he forgets what day it is, gets confused with words etc etc etc.

    We get a little help from our local council with housekeeping but as yet we have not required any assistance from Alzheimer's Australia. I attended information sessions that they held which were good.

    So we take things as they are, knowing that one day everything will change but until that time comes, he is living life well in spite of AD and other physical ailments.
     
  13. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    48
    Well said. Perhaps the AS are trying to put a positive spin on the nature of the beast but it hits home hard when you know your daily life has been turned upside down by dementia. In our situation with my husband, who has been diagnosed with MCI but who has slipped badly in recent months (appointment due on January 15), every day brings up some concern/anxiety largely for me, so that I feel I most certainly DON'T live well with it.
    At our stage, apart from friends being supportive, we have to manage as best we can. My husband can be left safely and potters around quite happily but he has no short term memory and cannot be relied upon to do things. If appointments are due and I am at work, I have to phone and remind, leaving memos do not work now, and he still forgets the appointment then gets very angry. The behaviour side I find the hardest as he gets into real moods and shuts me out, not speaking for hours, then it is forgotten by him even though I have been shouted at and treated badly. Living well with it??? No chance. But we just have to carry on, each new day is a new day. I am determined that we still do things, remain sociable, keep active, travel, follow all the limited advice given but I sometimes wonder for how much longer. It is living on a knife's edge at times. Thanks for reading this.
     
  14. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Hi echo everything you have said and although it's not helpful please know that you and hubby are not alone in your daily struggles to cope and find new strategies to deal with ever changing needs.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    I think Lawson has summed it up well.
    Some people live well despite dementia.
    Mum is living well despite dementia as she is in a care home and is content, but I wouldnt call her living well with dementia as her life is now very restricted because there is so much that she can no longer do.

    Fairy - I love the idea of jelly for breakfast :)
     
  16. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,426
    Male
    Cornwall
    Probably a thread that can be read in various ways why because we are all different in how we think how we accept things how go about dealing with our different medical conditions , this is my personal view I think a lot of medical problems stem from how we lived our lives we see on the TV & media daily , medical problem ca be caused by Food , Smoking, Sport , Sex, Drugs, Alcohol just to name a few , Dementia has been around for hundreds of years and its only really hit the lime light in the last 15 to 20 years Ok I have had dementia since age of 57 continued working until age 65 unfortunately where I was employed you couldn’t work beyond that age
    my dementia has never worried me there no choice I have got to live with it but it would be much easier if I didn’t have to have so many a battles with Bureaucrats over the years
    I say live every day as though it’s your last because one day it will , As I said only how I look at life myself
     
  17. trigger

    trigger Account on hold

    Aug 25, 2009
    138
    Plymstock Devon
    I wonder what Medical Problems they will have in the future and this is only the Girls

    The number of teenage girls going to A&E with suspected alcohol poisoning is one and half times the rate of their male counterparts, according to a study.
    Overall attendances for alcohol poisoning in England have doubled over six years, according to the Nuffield Trust, which warns of a "stark challenge" for the NHS.
    It says they have gone up from 72.7 per 100,000 of population in 2008/9, to 148.8 in 2013/14 - some 65,882 cases.
    Young people (15 to 24) had the highest rates of A&E alcohol poisoning visits, according to their research.
    In particular, the rate for 15-19-year-old females was one and half times that of men the same age - 357.6 per 100,000, compared to 259.4 in 2013/14.
    Total in-patients admissions in England - including those related to long-term, chronic drinking - increased by over 63% in nine years, reaching 255,567.
    Men are more likely to be admitted than women and - in contrast to specific alcohol poisoning cases - the 45 to 64 age group makes up most booze-related admissions.
    The report also found people living in poorer areas were far more likely to need help - rates were four times higher for those living in the 20% most deprived areas.
    However, the true number of alcohol-related admissions could actually be much higher
    The study did not count cases where alcohol was a contributing factor, such as falls, domestic violence and heart disease.
    Joint author of the report Claire Currie said alcohol was adding significant pressure to an already stretched NHS and urged the Government to do more.
    She said: "Our research has uncovered a picture of rising and avoidable activity in hospitals, representing a stark challenge for the Health Service at a time when it's already great pressure.
    "Hospitals alone cannot tackle this issue - the Government must consider measures such as minimum unit pricing, restricting availability and limiting marketing and advertising."
     
  18. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    Living well with Dementia? Not in my experience. My Husband was tormented with delusions and hallucinations and many, many infections.Pete was doubly incontinent and violent. He hardly slept and that's only half of it. How could he live well in that condition? How could I live well as his Carer? How many people care for PWD and are bought to their knees? The threads/posts on this Forum make it perfectly clear that a huge majority of people DO NOT live well with Dementia. I feel as though the statement has watered down the effect that Dementia has on people; the public who haven't experienced the disease will never know the heartbreak unless they are told straight.

    I would like the AS to publish a poster with the horror of Dementia in black and white. Something like the work of Barry Reisberg should make people sit up!

    http://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
     
  19. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,426
    Male
    Cornwall
    Yes Lyn obviously your correct , there are those who carry on living a great life after diagnoses and others who don’t and there are numerous reasons for that , I just quickly read through Dr Reisberg’s clinical stages of Alzheimer’s disease like everything we read it doesn’t cover or explain everything for instance how long would a person live after the initial diagnoses , he said a person would probably die when they get to the 7th stage , well that could take years I would imagine majority die of something else before then again depending on age , I’m the fifth member of an extended family diagnosed with dementia there possibly a couple of others close family members who would not get a diagnoses but again that life how the cards fall
     
  20. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I think they are using words to try to put the disease in a better light partly because they don't want people to be frightened and partly because if it is likely to attract more funding if it is seen in a more positive way. However by doing that they undermined people who are living with dementia and people who are caring for them. It's publicity pay off time done with the best intentions and has slightly misfired. I agree with others that there should be good things - how many can continue to work and pursue hobbies and interests, enjoy activities that they have always enjoyed but it should also show the other side - they can't try to dupe people, it won't work!

    As always Tony gives us some really useful insights and he always challenges me to think around things more evenly, thanks Tony.
     

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