Alzheimer’s Disease and Special Needs


Me and my sister had a girlie night in the other evening and we watched a lovely movie called The Notebook.  Apart from it being a beautiful love story that made me sob buckets, it also touched on the sensitive issue of Alzheimer’s disease.  This is particularly sensitive for me because my mother-in-law died of this type of dementia five years ago so I was heartened to learn today that scientists have developed a drug that may halt or slow down the progression of the disease. 

Anyone who has had experience of this disease will be only too aware of the heartbreaking ways in which it can manifest itself.  To watch a loved one travel down the emotional roller-coaster path of mental decline, often to become an irrational stranger, is painful to say the least.  My father-in-law was very much looking forward to retirement with his wife – they had all kinds of things planned but sadly, Alzheimer’s disease robbed them of the chance to enjoy the fruits of their hard work.  Instead, my father-in-law cared for his wife.  Her condition meant that she was not safe to be left alone.  Her husband, in spite of his own failing health, stayed by her side and tenderly saw to her needs as her cognitive and physical abilities gradually declined.  We all helped out with the care of course and we would often try to get him to take a rest but he would simply say to us for better or for worse, in sickness and in health.  He remained loyal to his marital pledges right to the end.

My experiences with the Samaritan’s also taught me that suicidal tendencies in the elderly are very high and a major factor in this is that they are acutely aware of their deteriorating condition and would rather end their life than be a burden on their loved ones.  It’s genuinely heartbreaking.

Another grim, but utterly unacceptable aspect of dementia is that sufferers can also often have the added burden of mistreatment.  Yes, it’s a sorry fact that vulnerable people who are dependent on carers for their daily needs, often become the victims of abuse.  The abuse comes in many forms – neglect, bullying, verbal, emotional and physical to name a few.  Sometimes it’s so subtle that it’s hard to recognise but you only have to google the words “abuse of people with dementia” to see how widespread it is.   

And the abuse goes further than people with dementia.  Just yesterday the NHS was slated for it’s “appalling” neglect of six patients with learning disabilities after the results of an enquiry, prompted by the death of these poor patients, were released.

To summarise the basics of the report, it stated the following areas that need addressing:

  • Many health care professionals don’t understand much about learning disabilities
  • People with a learning disability are not a priority in the health service
  • Not listening to families and carers
  • Not understanding the law around consent and capacity

An innate and unspoken prejudice seems to prevail in the attitude of some care-workers and I’m at a loss as to know what it is that makes people in the caring profession impatient, intolerant or just downright cruel towards vulnerable adults with special needs.  I guess there are many influencing factors.  Maybe it’s the state of dependency that causes impatience and anger in an overworked, under-trained and stressed-out care worker.  Sometimes, people with dementia can be rude, they may even lash out at their carer.  Perhaps carer’s with little experience or knowledge of these conditions don’t know how to react appropriately.  Or it could be that, due to ignorance or intolerance or just plain shallowness, some carers are repelled by their condition.   

None of which justifies abuse of course and it’s disturbing to think that such people may be looking after our vulnerable citizens but I should probably stress at this point that not all care-workers are bad.  Indeed I’ve witnessed much tenderness and indiscriminate self-giving from many of my colleagues over the years towards their patients regardless of that patient’s condition or mental state.  There are some remarkable people in care-work who carry out heroic tasks on a daily basis without recognition, nor expecting any.  These people should be celebrated. 

But it’s sad and inexcusable that the abuse goes on and we musn’t turn a blind eye.  These people are human beings.  They are someone’s mother, grandfather, daughter, brother.  Cruel and discriminatory practises, however unintentional they might be, must never be tolerated.  It’s just wrong.  Consistency is needed in all care homes and hospitals – a consistent approach and a consistent response.  There are no levels of abuse in my view and the law must protect vulnerability in all its forms.  People with special needs should have their needs identified and met or be empowered to help themselves.  If this means more public funding to improve the welfare of people with special needs and to educate their carers then so be it I say.  And as parents, perhaps we should be teaching our kids that people who have different needs from the norm, they still deserve to be treated equally, with dignity and respect.  Define normal anyway?

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6 responses to this post.

  1. Yes, Earthpal, as always you hit the nail on the head.

    Regarding the apparent suicidal trends in elderly people, I am of the opinion that life for them at that stage is not so valid as it was tens of years before. Their role in life in most cases has been carried out and they cannot give life any more sense.

    As to those caring and nursing, the word is vocation. Money in their case is a collateral happening that does not pay their real effort. When it is all the way round, then the abuse and inhumane attitude become present.

    Reply

  2. Nice post.Keep up with the good information!

    Reply

  3. Vocation is the correct word Jose. Nursing, like teaching, is a vocation and it seems to me that many people are entering these professions for the wrong reasons.

    I hear what you are saying about the elderly. Perhaps they do come to a point in their life whereby they lose their sense of purpose in life. Becoming a burden on their loved ones is a huge worry for them. I think that if their health is such that they still have some quality of life then there is still a life role for them. And they can teach us so much.

    Reply

  4. I found your site on technorati and read a few of your other posts. Keep up the good work. I just added your RSS feed to my Google News Reader. Looking forward to reading more from you down the road!

    Reply

  5. Your blog is interesting!

    Keep up the good work!

    Reply

  6. Thank you Alex.

    Reply

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