Disinvesting to invest is essential for delivering high value post-diagnostic support in dementia

Medicine has always had fads and fashions.

There’ve been so many pilots in the past, that one cannot help whether any of the ‘new models’ of care will in fact offer anything new this time. Likewise there have been countless reports to say that the care and support following the diagnosis of dementia can be woefully adequate, that one can rightly doubt the long-term impact of yet another one.

For a person who is newly diagnosed with dementia, the diagnosis will not ‘unlock’ services, unless, say, certain certain social care criteria are met, certain nursing ‘continuing healthcare’ criteria are met, a person becomes eligible for residential care settings, or so forth. The aim that a means-tested social care system can be clamped onto a universal healthcare system, free at the point of delivery, inevitably sounds like a ‘lemon car’.

For a person with a new diagnosis of dementia, a NHS patient who wants to live better with dementia can find himself (or herself) locked into the medical model of dementia. In other words, the ‘treatment’ on offer are some drugs, which are not terribly effective for some, and do not actually slow down progression, for dementia, the most common of which is Alzheimer’s disease.

This money could be better spent in promoting living better with dementia, from a workforce which can promote dealing with the social model of disability, such as reablement or rehabilitation. This means divesting from the huge budget for drugs for dementia, towards ways of promoting wellbeing, the key statutory aim of the Care Act (2014). This means giving social care practitioners the correct tools the job, including training (such as Skills for Care or specialist dementia-oriented vocational skills).

The way in which the NHS negotiates the diagnosis of dementia is very often a farce. A GP is expected to make a diagnosis of dementia given very limited time and resources, and may not himself (or herself) feel very comfortable in distinguishing the common types of dementia anyway (such as vascular, Alzheimer’s, diffuse lewy body disease). The patient with a suspected diagnosis may end up with a memory clinic, psychogeriatricians, acute medicine or medicine for the elderly, and so on; and even some in secondary care may not wish to ‘offend’ the diagnosis given in primary care, however unsure.

Of course, it’s not feasible that all dementias can go through a lumbar puncture, sophisticated brain scanning, or elaborate psychometry; and nor indeed is this clinically desirable. On the other hand, one has to worry at the large volume of potential incorrect diagnoses of dementia which are currently going unchecked, which is doing neither patients nor the medical profession favours. Current ‘clinical leaders’ in dementia have resoundingly failed to address this fundamental issue.

This is where I strongly commend to you Sir Muir Gray’s work.

Watch it for yourself here.

It should be on everyone’s RADAR for anyone involved in dementia care to think about what is most likely to produce the best outcomes from the current expenditure. Replacing drugs with innovative drugs is not likely to be the answer; however replacing drugs with social prescribed interventions, such as iPods for residents in care homes, is likely to be constitute a better outcome for wellbeing.

With 850,000 people approximately in the UK with dementia, there’s a good sample size on which to operate a programme budget of sufficient power to make a difference to the service.

“Productivity” is not a particularly helpful paradigm for dementia care, whereas it might be useful in a hip replacement; unless one is thinking about a reduction in production of infections or falls in a nursing home. The mantra of “effectiveness” is probably best understood in terms of “cost effectiveness”, and the money spent by NHS England on diagnosis compared to the money spent elsewhere in the system on post-diagnostic support must be cause for alarm.

Vascular dementia is a common type of dementia across all age groups, and factors which impact on this tend to be the ones which impact on general cardiovascular health; such as diet, smoking, blood pressure. If we know where and how many patients exist who might be particularly at risk for such vascular conditions, such as some Bangladeshis in parts of the country, we might be able to provide a programme-based medical approach more tailored to patients’ needs on a systems and programme level.

And the inequality and inequity in the systems are massive problems. It should not be case there should be such Russian Roulette in the provision of dementia services according to eligibility from local authorities. Persons wanting to live better with dementia, and carers are not focused on how delivery of care will be delivered by institutions; they form part of a dynamic network, can learn off one another in behaviours, skills and knowledges, and can make decisions, sometimes with professionals, about the things which might improve their health and social care. This doesn’t just include physical or mental health; but might include advice on assistive technology, ambient technology, design, transport, or housing (where the policy of ‘dementia friendly communities’ to promote independent living has made substantial inroads) are all highly valued.

Now is the time to be cruel to be kind. As Sir Muir Gray rightly says, “Disinvest to invest”.

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