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It’s time for dementia to be seen as a disability

BethyB1886BethyB1886 Member Posts: 1 Listener

Beth Britton is a former carer turned award-winning writer and social care consultant who specialises in ageing. In this blog she explores her personal experiences of her father’s dementia and how it progressed over nineteen years.

When people living with dementia were granted access to the Blue Badge car parking scheme in August 2019, many activists viewed this as a small step towards dementia being seen as a disability. The link between disability and dementia is something that many of us with personal experience of dementia have always advocated, but in the wider world dementia is still primarily seen as ‘memory problems’ and a normal part of ageing, which of course it isn’t.

My experiences with my dad

I know how disabling dementia can be for a person having watched my father live with vascular dementia for nineteen years. To begin with he had tiny strokes known as TIA’s (Transient Ischemic Attacks) that disabled small parts of his brain. As that process accelerated, he also had a larger stroke and began to experience physical disabilities too.

Over the last nine years of his life my dad’s condition deteriorated. He went from a man who was walking, talking and able to independently eat and use the toilet, to a man who was immobile. He had virtually no speech, needed support with eating, drinking and all aspects of his personal care, and was doubly incontinent.

Taking dad out in his wheelchair and supporting him in cafes to eat and drink often elicited stares and sometimes even hushed comments. I imagine this is something many disabled people experience and something I also discussed in my G8 Dementia Summit film. I think most reactions were borne out of sympathy, but there was also an element of discomfort - perhaps even disgust - to see a grown man requiring such support.

Beth with her arms around her father. They are both smiling at he camera.

Dementia as a disability

In the end, my dad was hugely disabled by his dementia, but for people in the much earlier stages of their dementia it is largely a hidden disability. If a person can still walk, talk and look after themselves, most people assume that they are coping as well as anyone else in society. Strangers don’t see the daily struggle to remember how to do the simplest tasks, the exhaustion that such remembering often causes. Not to mention, the time it may take the person to do something that previously would have been accomplished quickly and all of the emotions that go with that.

The fear for the future, the feeling of failure, the wondering “Why me?” or “Why us?”.

All of these experiences mean that dementia is very much a disability, even from the early stages. For these reasons advocates and activists whose passion is dementia, and who in many instances are living with dementia themselves, won’t give up the fight to have greater recognition of dementia as a disability.

Many of us are hugely inspired by the life-long work of numerous disabled people in championing their needs and rights. Therefore, it seems appropriate to pose a simple question to Scope’s supporters, how can we move forward?

To keep up with Beth’s work you can check out her website and portfolio.

How do we ensure dementia is seen as a disability? Do you have any experiences to share? Let us know in the comments below!

Replies

  • dolfrogdolfrog Member Posts: 421 Pioneering
    edited July 21
    some of the previous generation of my family may have had undiagnosed dementia.
    There are various types of dementia which can have almost a life long set of problems in some cases.
    You could have a look at some of my related PubMed research paper collections 

    Dementia 
    Alzheimer Disease (AD) 
    Mild Cognitive Impairment (MCI) 
    Motor Neuron Disease. (MND) 
    Aphasia 
    Aphasia - Progressive (Primary Progressive Aphasia)
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/41963210/public/ 

    There is a great deal more research available regarding the possible multiple issues  

  • newbornnewborn Member Posts: 536 Pioneering
    Màinstream newspapers today did pick up on àll the money hurled at everyone and everything,  but still not a penny for care. The country has a terrible illiteracy rate at the best of times, including 11% (?) of so called university graduates  being functionally  illiterate.  There are brilliant teachers.  Many worked hard throughout the Covid lockdown.  But many simply did no work at all. For which, they have had a pay rise. Like all civil servants,  they have good private  pensions.   A different  world from care workers. They put their lives at risk to help dementia and all other patients. So, they get nothing.

    It puzzles me why all governments of various parties  have such dislike of social care,  for dementia  in particular  but all disability,  and why it was ever considered not part of the n.h.s.
  • newbornnewborn Member Posts: 536 Pioneering
    Dolfrog it just occurred to me that there's  a  similar situation  with the autistic spectrum  and with your own  area of expertise,  where as you say the effects may be there all along, but not recognised.  The potential  for people to be wrongly treated must be wide.
    (Someone  was speaking about her mother, finally diagnosed autistic in her eighties after being treated as mentally  ill, then locked up until she cracked and did become mentally ill.   )


    I'm hoping good will come from people being shaken out of stale thinking , because  of Covid.  There might be some indirect gain even from methods of treatment  and  comprehending damage, which can involve parts other infections don't. Covid treatments are suggesting possible  links with many other conditions.   Somehow, maybe  there is hope a spinoff benefit will be new treatments  for  chronic conditions.


  • AsadAsad Member Posts: 1 Listener
    My name is asadullah wafa
  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    edited July 26
    One quick point....... many things do not get classed as disability per se because then it would be lumped into being dealt with by the Government directly. The way the system works now is to distribute some of the costs involved onto the relative councils and forcing them to have both the cost and also the trouble of dealing with things. Social Care is a prime example of this attitude.

    Firstly I should say that I have little specific knowledge of Dementia, most is from second-hand information from others and from then Internet, so excuse me if I write something aggravating.

    What worries me in general with the state of the disability system is that there are too many different issues being lumped together under generalized headings rather than properly defining specific groupings of linked, or at least similar, disabilities. For people to understand what disability is and how it affects people a very broad understanding is required because everything is pushed under one heading. For example someone basically healthy but has lost or was born without a limb are supposed to be classified together with something complex like Chronic Fatigue Syndrome or MS. If the "specialists" cant properly define such differences what chance has Joe Public? In the case of Dementia it is often confused (by the public) with age and loss of mental capabilities caused by it. Trying to explain the major differences between them is a difficult thing and even harder to understand without first-hand experience. Added to this so many people post and blog specific cases assuming that all cases are the same (which they are definitely not) instead of realizing that each case is different and often comes down to proper care and support or the lack of it. I don't just mean the Social Care support but also family support which (to me) is the most important factor. After all, if you just stop someone in the street and ask them what disability means to them they would most likely say "use of a wheelchair or other aids due to limb or sight loss" and their experience of it is most likely the broadcasting of reports of disabled sports as suchlike.

    Maybe I am being a bit hard on the average person but in these days of people wanting doctors to prescribe pain killers for headaches rather than going to a Pharmacist and asking for advice and other such silly misuse of the health services (especially ambulances which people no longer see as a last resort in dealing with health issues) it seems to me to be no exaggeration to say that the average person cannot think for themselves about health without someone they believe to be an "expert" detailing everything they should do step-by-step. People should be more aware of simple measures as a first resort rather than not considered at all.

    Sorry, I think I am sidetracking. My main concern is that under the current definition system it is impossible to get the situation of many disabilities (not just Dementia) clearly defined and supported. Considering my contacts with ALL parts of the health services I wouldn't even trust most of them to get things right.

    Sorry if I'm rambling but it's late and I can't sleep (again).

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • newbornnewborn Member Posts: 536 Pioneering
    Agree every word o.p.,  t.k., dolfrog, .  I haven't the screen/sight for a lot of reading, so haven't  read the links nor the Baroness  Cumbernauld report, but heard her interviewed on radio 4, confirming the last sentence in the post above.  N.H.S. not fit for purpose and does not have patient as central to the purpose of the organisation,  and she says nobody ever should have any medical encounter without witness, preferably recording. Covid makes that difficult, but people in institutions  have less protection than animals in a  abbatoirs,  who must by law have cctv in all areas, to reduce opportunities for cruelty.

    My own suggestion is reversing the incentive by tweaking law, ensuring those  who D O  N O T  whistleblow are the ones frightened for their careers and pensions, and of appearing in court charged as colluding.   As a comparison, you and I  can't deliberately plot, nor even just go along to watch,  an explosion,  a bank robbery,  or a plan to stab  someone from a rival  drugs gang.  We risk being jointly liable, so do even our other friends, family, or gang members, who know what is going to happen  but don't  report and prevent it.   When everyone including the hospital cat knows perfectly well that a surgeon, a procedure or a prescribing habit is dangerous, it shouldn't continue for decades  because  of a code about "not snitching on mates'".

    I would say the office staff are not exempt either, when they are aware of money squandered or best practice ignored.   That's  taxpayers' money.   That's not 'free' money,   not nobody's  money,  and not 'Monopoly money'.
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