King's Fund

My talk for the panel discussion next week at the King's Fund #kfdementia

The talk will be based on the following, as time permits.

The Department of Health now needs to consider the next phase of work on Dementia, after the Prime Minister’s Challenge on Dementia, which is due to end in March 2015.

We are now in a much better place than where we were.

This is great.

There are inevitably formidable challenges for us in England on the formation of policy.

Where there seems to be money available on ‘the magic money tree’ available for foreign conflicts, the money spent on people currently living with dementia is in a financial strait jacket.

We know, for example, social care funding has not been ring fenced since 2010. We know that delayed discharges due to social care cuts can make life a misery for people living with dementia stuck in hospitals.

We have to try to make ‘whole person care’ work in the next few years. Various technological innovations have a massive role to play in the quality of lives of people living with dementia.

I believe that, although spending is potentially a ‘bottomless pit’, we pay for we what get to some extent.

We know that, by 2015, the intention was to have 1 million people as “Dementia Friends”. That £2.4 million programme was funded by the Social Fund and the Department of Health.

But we do need to know whether it’s had any effect?

How much communication has been turned into action?

People living well with dementia are not just potential customers for more welcoming high street shops.

As global policy is now recognising, it is not simply a case of being ‘dementia friendly’. People with dementia have human rights and expectations in equality law.

Increasing awareness about dementia, though, is inevitably important to reduce stigma and discrimination against people with dementia. We share this goal in common with other jurisdictions.

But cultural attitudes have been sadly slow to change. It took ages for a person living with dementia to become opted onto the World Dementia Council. And even there, there weren’t open democratic elections for this position.

But it would be hard to dismiss that we are in a much better place than we were in a few years ago. A challenge is, that by focusing too much on a ‘cure’, we ignore falling standards of care for those currently living with dementia.

And the public need to be told the truth about the likelihood of a cure for any of the dementias. There are about a hundred different types of dementia. So the world is being sold a pup potentially if we are talking about a single cure for dementia.

In June 2013, the Blackfriars Consensus statement concluded that risk in the population might be reduced so that fewer people at particular ages develop dementia.

This dialogue needs to be transparent. Last week, the World Innovation Summit for Health’s (Wish) Dementia Forum met. Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, it said. In October 2014, it was reported that an astonishing nine in ten care homes and hospitals fail to provide the proper treatment.

The Care Quality Commission review found widespread neglect, lack of care, poor training and failings in communication. We can’t simply slash the bed numbers: population ratio and hope things will be ok.

And the caring culture is not just boosted by people selling the idea of compassion. A caring culture is boosted by not having carers on poor employment conditions. If things aren’t right, patients and carers need to know what advocacy routes are open to them.

The lack of progress, however, have enmeshed a number of different governments in England across the years.

The late Enoch Powell even robustly tackled the issue in his infamous ‘Water Towers’ speech of 1961. It should not be seen as a failure of medicine if people with dementia need to benefit from an acute hospital admission.

However, hospitals can be very disorienting places for people with dementia.

An aspiration for people with dementia to live well in the community is not an unreasonable one. Informal caregivers, friends and family, often know persons with dementia the best. And their wellbeing matters too.

Involvement of all of them with professionals to pre-empt problems and issues proactively is a valid aspiration. Improving specialist nursing capacity will be vital for this.

And how are we to measure ‘success’? All too often the English dementia wonks have ascertained success through “the numbers game”. The number of people recruited into dementia studies. The number of diagnoses of dementia. But we need high quality as well as an ethical quantity.

A diagnosis of dementia should be accurate. Some types of dementia react very badly to certain types of drugs.

We need a properly trained workforce which can make these accurate diagnoses in a timely fashion.

The next five years therefore have similar challenges, but the opportunities are also exciting.

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