Friday, 29 March 2013

What people with dementia really want

People with dementia and their family carers say (National Dementia Declaration) that they want to see the following outcomes in their lives:
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future. 

If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.

Sunday, 17 March 2013

Is this inevitable?

On an online forum, someone who, along with other family members, is looking after Mum who has dementia, is asking whether it is inevitable that she will cease to recognise them at some stage.

My thoughts are that almost nothing is inevitable, except death - and the person we are caring for might die today, as might we.

I've always been a bit anxious so if I allow myself I can think of any number of horrific scenarios. You don't even need to imagine them these days, you can if you wish read blow-by-blow accounts of carers' experiences in real time.

What we have to try and do is, as people keep repeating, to live in the moment, like so many of the people we're caring for do.

I actually find the thought that everyone is different and everything is unpredictable a consolation.  How would anyone cope if all people with dementia followed exactly the same path, on the same sort of timetable, via a series of known and minutely documented horrors towards their extinction?

And, by the way, it certainly isn't inevitable that Mum will fail to recognise her family.

Thursday, 7 March 2013

Cameron: 'It's a disease!'

An extract from yesterday's Hansard: 

Tracey Crouch (Chatham and Aylesford) (Con):
Figures published yesterday show that over the past 20 years there has been a 137% increase in the number of deaths linked to Alzheimer’s disease. Does the Prime Minister agree that if we are to stop that awful condition from afflicting more people in the future, we must invest much more in preventing it and on research in particular? Will he outline to the House what the Government are doing to help support those with dementia and those who care for them?

The Prime Minister:
My hon. Friend raises a point of concern to everyone in this House and everyone in this country, because no one knows when a relative could be afflicted by the condition. Her point is absolutely right: this is a disease and we should be thinking about it as a disease, as we do when we try to crack cancer, or heart disease, or strokes. That is why the Government are increasing the amount of money going into medical research so that we can try to prevent dementia in more cases. But there are many other things we need to do to improve the care in care homes and in hospitals and to ensure that we have more dementia-friendly communities so that we all learn how to deal with people who have dementia and how to help them lead lives that are as productive as possible.

This is very interesting.  First, Cameron is stating publicly that 'it' is a disease and comparing it with cancer heart disease and stroke.  Millions agree (the clue is in the name: Altzheimer's Disease).  But it isn't treated like these other diseases either in the way that people with the disease are cared for (their treatment is not 'free at the point of use') or in terms of the amount spent on research (the modest increase in no way reflects the scale or impact of the disease).

It will be fascinating to see whether he stands by this statement, actions speaking louder than words.

I'm inclined to think that it's just the usual PR.  As a politician he makes a fine PR man. 

But at least now these words are on record and there's something to try and hold him, and others, to.

Follow this link for a more recent comment on Cameron's views on dementia: