Researching and Improving Dementia Services

Memory

Today the government has announced an increase in funding for dementia research, indeed, the figures given by the BBC talks about raising the money put into dementia research from £26.6m to £66.6m by 2015.

Great news, really it is. I think it’s essential that there is a focus on dementia and what can prevent and assist those who suffer from and potentially suffer from dementia in the future.

As well as research though there were other strands to the government’s announcements about dementia.

Mr Cameron will set out plans to step up research into cures and treatments and to ensure that the health and social care systems are equipped to deal with the problem.

The highlighted part is the area that sticks a little in my throat as I read it. I do wonder how much the government and ministers are aware of the services that have been decimated (probably more than decimated if we are going to be talking literally) over the last couple of years and the disinterest shown by the general public in terms of improving both health and social care outcomes for those who have dementias.

Money into research and cure is a hopeful statement  – it looks forward and it helps us who are the electors of today have more hope for our future with the fear of losing cognitive functioning in our later (or not so later) years.

Money into equipping health and social care systems to ‘deal with the problem’ of dementia are altogether something else because it isn’t ‘us’ who will benefit – we, todays electors, are the ones who will pay and experience (or at least, the lack of political will on all sides)  shows that no-one wants to pay for the true costs of providing good quality care for older people with dementia in real terms.

I’ve seen a lot of simplistic talk about dementia over the past weeks, months, years. It is not a single diagnosis and it does not affect people in a single way. People with dementia walk and function among us and they are not all older people sitting alone in bungalows waiting for pity – although it’s important to remember that some do live alone without sufficient support or interaction. They are not all people who want or need pity – there is hope for positive life experiences even when ones cognitive functioning is impaired.  We infantilise the process of ageing and those who merely have a diagnosis of dementia and it says far more about those who are speaking and talking in those terms that those who may be bearing the progress of their diagnoses in as many different ways as there are people.

However one thing does need to be addressed and I hope it is addressed by the government today – with money. That is the issue of treatment and assumptions made about people with dementias in institutional care settings. We have had talk about ‘dignity in care’  – particularly in hospital and residential care. This must be approached and tackled in the ways I have previously discussed by putting more people on the ground in terms of nurses in hospitals and increasing staffing levels in residential and nursing homes. We need to back up a determination to provide better care for some of those people who won’t be ‘shouting loudly’ or have families to ‘shout’ for them by placing independent visitors and advocates in these institutional settings and improving regulation and quality control for those who need these services.

As for changes in home care – we need to embrace truly personalised care and the ‘personalisation’ agenda beyond managed budgets of block contract agencies providing 15 min ‘spot checks’ to put a microwave meal in the oven for older adults with dementia in their home. This is not dignified and it is not cost effective. Over time, putting more good quality and accessible care into people’s homes will keep people out of residential and hospital settings over the longer term but it will cost.

So I hope these announcements the government makes will look at quality of care and will look at funding of care over the long term for people with dementias who live both in the community and in residential settings.

I hope to see, alongside better funding for research

1) Better support for family/friends as carers

2) Proposals to make personal budgets work well and for different support to be used for those who are not able to engage in the process of choice themselves either because they don’t wish to or don’t have the mental capacity (or family) to do so.

3) More thought put into the funding mechanisms of care for people with dementia both at home and in residential settings. Dilnot or not Dilnot. I’m not in agreement with all the tenets of Dilnot (I’d favour the so-called ‘death tax’ to be honest) but its better than that awful hotch-potch that we have now and what we can’t afford is to allow things to continue and to leave matters up to different local authorities to manage in their own different ways and at different levels.

4) Better non-directed advocacy with muscle for those who don’t have family/friends/community around them (by non-directed advocacy, I mean advocates who specialise and are trained in working with people who may lack mental capacity to ‘direct’ or instruct their advocates)

5) Robust regulation of dementia nursing and residential homes and wards in hospital with random spot checks and high standards.

I’ll be back tomorrow and see how the government does on this announcement.

One day though, I’d like to see a government of any political flavour that truly does look at national interest and not political expediency in terms of policy making.

The triumph of hope over experience.

photo by Ruth Flickr

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