How dementia can turn our loved ones into strangers

Most of us think of dementia as a disease of the elderly, where you just get forgetful.

Tuesday, June 12, 2012

DEMENTIA Awareness Week was from May 21 to 27 and I was saddened to notice that the media did not rise to the challenge to do their bit to promote and highlight the daily problems encountered by those touched by this very cruel disease.

Unfortunately it coincided with, and got buried under, coverage of the Olympic Torch, Queen’s Diamond Jubilee, Leveson Inquiry and the pasty and caravan tax U-turns.

  1. CRUEL DISEASE: Sandra Pember, right, lost her mother to Alzheimer’s a year ago.

It seemed shameful that the price of a pasty or caravan should have generated more coverage than promoting the plight of those suffering from dementia and those supporting them.

Most of us have heard the name dementia, and will know someone who has got it but until you have had personal experience of exactly what that diagnosis means, the full impact upon the lives of that person, their family and close friends cannot be fully appreciated or understood.

In my case, I lost my own mother to Alzheimer’s a year ago and now a dear friend has been diagnosed with the early onset of the illness.

Most of us think of dementia as a disease of the elderly, where you just get forgetful.

Sadly, that doesn’t even scratch the surface of the problems.

There is a worrying trend of people in their 40s and 50s being diagnosed, with some even younger than that. Once diagnosed with early onset dementia, it can be a devastating blow emotionally and financially.

With your whole world turned upside down and with plans and dreams shattered, you can find yourself with low self-confidence and up against the problem of trying to access a benefits system which is under great strain.

The Gloucestershire branch of the Alzheimer’s Society is very helpful and has even helped with filling in forms and giving advice on other benefits following a diagnosis of dementia. It is good to see that posters are going up in doctor’s surgeries and on community notice boards around Gloucestershire, suggesting that if anyone is worried or concerned about a friend or relative, they should contact Gloucestershire 2Gether NHS Foundation.

It’s excellent , and well worth asking your GP for a referral.

At a time when goal posts are being moved by the Government and social services, an increasing number of people are finding they aren’t eligible for free care or that their previous care costs are increasing dramatically, leaving their financial burden crippling.

When a person is elderly, it can be all too easy to think memory problems are just a sign of the ageing process and if you don’t see the person all the time, it can be quite a while before you realise these lapses could in fact be a sign of a more serious problem.

No matter how prepared family and friends might be for the possibility of a diagnosis of dementia, I don’t think you’re ever prepared for what will eventually hit you.

In reality, having experienced my mum’s journey through Alzheimer’s, I was very naive.

We’d looked dementia up on the internet and knew that in time things would progress and cause more problems.

There were stabilising drugs which helped for a while but nothing could have prepared us for the progression tom the need for the family to be worried 24/7 – the time when mum put jam in her tea, repeatedly asked the same questions or was unable to read or write, tell the time or distinguish daytime from night time, understand what she was being asked or told, be found wandering outside at night and how very scared she was of the slightest change.

But, for me, the most devastating time was when I’d taken her for a ride in the car one afternoon and stopped to get her a 99 ice cream, as she loved the chocolate flakes.

She promptly took the flake out of the cornet and threw it out the window.

When we got back home, she turned to me in the car and said I don’t know who you are, but thank you for taking me out. I sat there aghast and couldn’t believe my own mum no longer knew who I was.

I’ve only scratched the surface of this very important subject and I would like to see more help for patients and carers, and easier, quicker access to welfare benefits and services, which are so vital in helping people to cope and enabling them to enjoy what time they have left in as positive a way as they can.

Successive governments have been extremely slow to accept that dementia will become a major illness which will affect millions of individuals and be an enormous drain on the public purse.

It’s cruel and it’s unpredictable, with a complex symptoms for which there is currently no cure and which, over time, culminate in changing your loved one into a stranger.

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