1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Reading in today's newspapers......

Discussion in 'Dementia-related news and campaigns' started by maryjoan, Jul 9, 2019.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    Took OH for an xray today, and we had to while away 3 hours for the return bus home, so I bought a newspaper after seeing the banner headlines about the Green Paper ( which has, it seems been delayed 6 times).
    The article raised something I had been thinking of only last week, and I wonder what you all think about it........

    We read so much about how people with dementia have to fund their own care in nursing homes, or if unable, have to jump through hoops for funding. I realise there is an issue that implies some homes charge so much, to offset the reduced fee social services pay for their users. I might be a bit simplistic on a complex subject, but I think that is the gist of it.

    The newspaper was drawing comparisons between the care of someone terminally ill with cancer and someone with dementia - how one is funded by the state and one is not.

    I got thinking - is dementia classed as a mental illness? Those who travel to the end of the illness will die of it, and often need to be secured.

    Someone who is bipolar, or psychotic or has another long term mental illness, are cared for by the state often in secure units if their illness warrants it.

    If the person who is bipolar (etc) is funded by the State, and does not have to fund themselves, lose the value of all they have worked for, home etc - then why does the person with dementia have to fund themselves if they are able? They both have mental illnesses...

    Have I got this all wrong - it's likely, I could not be understanding it correctly - but my thoughts are - why the difference? Does anyone know?
     
  2. witts1973

    witts1973 Registered User

    Jun 20, 2018
    638
    Male
    Leamington Spa
    It strikes me that they are an easy target as they no longer have a voice so they can have their homes sold without any struggle
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #3 Palerider, Jul 9, 2019
    Last edited: Jul 9, 2019

    No Your right, Its one of the things the Alzheimer's Society is trying to campaign for currently

    Edited: I found the link hope it works

    https://www.alzheimers.org.uk/get-i...159.74693193.1562046422-1089528834.1562046422
     
  4. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    355
    Sheffield
    It is a mental illness so why is not recognised as one by the NHS it doesn’t make sense.
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    You see I think the basic premise of the article is inaccurate - if you have another fatal illness and simply cannot care for yourself, you are going to be paying for care if you can no longer live on your own. I know people think that people with other terminal illnesses get a free ride, but it’s not actually true.

    The reality is that for most people with terminal illnesses, they do not lose capacity, which is of course the big difference when you are comparing anything to dementia. If you have a terminal illness that has progressed to a point where you can no longer live independently, then brutally, you are unlikely to live very long after that point.

    Unfortunately you can live many, many years with dementia after the point that you need some form of residential care. And that’s why people think that people with dementia are treated differently.

    I’m not saying it’s right that people have to pay for care whether they have dementia or another terminal illness. But I think it’s important to note that in that sense, all terminal illnesses are treated the same. And it does people with dementia a disservice to oversimplify this issue.
     
  6. Lawson58

    Lawson58 Registered User

    With many mental illnesses, there is often treatment that can be very helpful. Some people with diseases like bipolar, schizophrenia etc can be treated and though not always successful, some people continue to live fairly normal lives, continue to work and be a part of the community. Very few people with mental illnesses are institutionalized these days and that equates with how much it costs to sustain them. Sometimes the money is not sufficient to do this very well but it's still cheaper than having them in homes. Treatment for dementia is to minimize the effects of the disease and many of these are short lived or useless.

    If someone Is diagnosed with terminal cancer, there is an implied limit to how much much time (and care) will be required. The problem with dementia patients is that they can live for many years and governments just don't want to spend the money that will be required.

    When I was growing up, people with dementia were kept hidden away and mostly none of us knew what was happening in many families. Sometimes, we knew there was a granny or relative living with a family but often we were kept away and they were never mentioned.

    Dementia just doesn't arouse the same sort of sympathy that a diagnosis of cancer or MND or similar does and until we can get the general public to recognize that, we are stuck. Governments won't spend money until they are forced to. It has nothing to do with fairness but has a lot to do with ignorance and and reluctance for governments to spend money in an area none of them understand or want to understand.
     
  7. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    200
    Female
    Mid Lincs
    Always baffled me how they can call dementia of any description a social disease. Until that changes IMO many will never understand the consequencies of living with it.
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    I am beginning to understand this better now, thank you for your replies. It's the whole concept of the disease that is difficult for those 'outside' of it to understand. Our GP has said to me several times that my OH is 'time limited' - but that is such a woolly phrase - OH could go on for years and years.....
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #9 Palerider, Jul 10, 2019
    Last edited: Jul 10, 2019
    The House of Lords Report was released this week entitled: Social care funding: time to end a national scandal

    Heres the link:

    https://publications.parliament.uk/pa/ld201719/ldselect/ldeconaf/392/392.pdf

    Edited: It was actually released on 4th July, last week. Just to note, the report estimates an £8 billion funding gap currently, whereas the Kings Fund estimates £9.5 billion by 2020.

    People with dementia are not just 'social care', they have a formal and terminal disease requiring complex care and don't deserve to be left high and dry outside of the NHS in terms of care as the report states:

    Reduce the disparity between entitlement to help in the National Health Service and the adult social care system, ensuring that entitlement is based on the level of need, not the diagnosis

     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,902
    Female
    South coast
    It isnt actually just people with dementia who have to pay for their care. A few months ago OH went into respite for a week and the place he stayed in was aimed at people with neurological diseases, so I saw many of the residents and OH chatted to them, so I found out what some of them had. There was a lady who had been in a road accident, a couple of people with advanced Parkinsons, a chap who had had a stroke and someone else with MS. All of these were paying for their care.

    Im not saying this is right, Im just saying that it is a misconception that it is only people with dementia who have to pay for their care.
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Yes absolutey. I suggest anyone interested reads the report, it is easy to read and weighs-up the different options in making change. I specifically targeted dementia, as this is the Alzheimer's Society TP :)

    Edited: to make corrections -I type too quickly
     
  12. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    926
    I agree. There was a startling headline in a national newspaper a few days ago, not sure if this is the same paper that this thread has mentioned, but it sells newspapers, I'm afraid .
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,902
    Female
    South coast
    My comment wast specifically aimed at you @Palerider or at the link you provided, so dont worry, Im not getting at you. It was just a general remark because people were talking about the difference between cancer care and dementia care and there seemed to be the impression that it was only people with dementia who have to pay for their care.
     
  14. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    654
    I agree. I added a comment to that article pointing out that error. I have an aunt with dementia in a care home. My husband has a very frail uncle who has minor health issues and a history of falls. He has full mental capacity and has chosen his care home because he can no longer live alone. Both are self funding.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West

    Lol...I was agreeing with you.
     
  16. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    So much about dementia and the care people need is still not discussed. TV programmes seem to cherry pick the positive parts, but never show someone wandering round in the night raging for hours and the carer trying desperately to cope. There seems to be a perception that PWD just need a bit of help with washing/dressing and as long as they get that, all is well - problem solved. There is no mention of all the phone calls, appointments, assessments, legal matters. You never see a carer at breaking point because their PWD has been fixated on 'the people upstairs are stealing everything' all day, just the pretty young thing in a uniform cheerfully making a cup of tea for sweet, compliant old Ethel. Ethel never throws the tea at the carer, refuses her meds or tells the carer to eff off.

    I don't see Martin Lewis on the telly looking at what the long-term cost of care might be if you get dementia, how you might plan for that, how you might be able to avoid losing your house, explaining the law, entitlement to benefits, being upfront about who pays for what, etc. I see countless adverts for funeral plans and over 50s savings schemes. I've never seen an advert for care insurance.

    We are STILL hiding from the truth about dementia. Currently there are real funding problems and a postcode lottery over what is available in various parts of the country. When dealing with the care system, you tend to find out how it works after you have committed yourself. Basic info is hard to come by, Social Services have their own agenda (saving money) and there's a lot of 'hidden' info that is not discussed. The inequity of self-funded CH residents subsidising LA residents falls into this category. When I chose mum's home I wanted to find a suitable place for her - that was my only priority. It was months before I discovered the home (which is excellent) also takes LA residents. Mum pays more than £200 per week more than the council do, for exactly the same accommodation/care.

    So I could move her to somewhere that didn't take LA residents. That might cost more but at least mum would only be paying for her own care. It's just not fair she has to give £200 per week to subsidise others as the LA don't pay enough.

    Dementia is not going away. We're all living longer and the number of people who will need dementia care in 20 years is quite frightening. I expect I will be one. I have no money so it will be the 'poor house' for me :(
     
  17. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,061
    Toronto, Canada
    I'm late to this but I must say that based on everything I've read, dementia is a physical disease. The brain is being affected physically, which is why it is said the firm diagnosis for AD can only be made with a post-mortem. TIAs and strokes damage the brain physically. Other dementias involve brain atrophy and/or deposits in the brain. So for me, that is physical, not mental. The problem is that the symptoms manifest themselves in unusual behaviour.

    Even the classic "mental" illnesses are now considered to be brain illnesses.

    I remember hoping that my mother was schizophrenic and not suffering from AD, because schizophrenia can be treated.
     
  18. 2jays

    2jays Registered User

    Jun 4, 2010
    11,591
    West Midlands
    I guess the reason this situation isn’t shown due to not “humiliating” the person who is raging.

    In my opinion, Best interests of someone with dementia means keeping them safe from any kind of harm, be it physically or from prying peep show eyes who wouldn’t necessarily view the person sympathetically.

    It’s a close call between trying to give a full picture of the disease and not putting someone up for ridicule, which could happen

    I know what I’m trying to say, but not sure if I’m saying it properly :)

    Edited it add : it’s like the WW1 film of a man who has severe shell shock. It seems this particular film is shown every time shell shock is discussed.

    I’m not sure I would want a film of my mum at her worst being continually shown as an example of what dementia can do.
     
  19. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    Absolutely. It's a very fine line, isn't it? And I also understand it's important to paint a positive picture so people don't think a diagnosis of dementia is an immediate death sentence.

    I really don't know how we can get round the problem of showing dementia as it really is for many people, and their carers, without, as you say, showing sufferers at their worst. I wish I did.

    It's important too (IMHO) that people have more understanding about the sheer length of time a person can continue with dementia and how they may need care for many, many years, slowly deteriorating until nothing is left. It's not just 6 months of forgetting things then a quick death. :(
     
  20. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    926
    I agree with you @Jaded'n'faded . Unless a person sees or has some involvement with dementia in action, I think it's very hard to grasp just what the illness entails. It's not just about memory loss, it's so much more. I think the lack of initiative, the apathy, is often beyond the grasp of many people to understand. I remember so many times explaining to well meaning people that my mother-in-law doesn't look at the calendar, for example, to know the day of the week, because it simply didn't occur to her. And she wouldn't remember the day anyway. It's been a steep learning curve for us
     

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