THE BLOG

The 'Cost' of Dementia

26/09/2014 17:12 BST | Updated 26/11/2014 10:59 GMT

I am always immensely uncomfortable when anyone tries to put a monetary value on dementia, purely because I know that there is so much more to calculating the 'cost' of dementia than could ever be accurately represented by the use of pound signs. The emotional, all-encompassing, life-changing (and life-shortening) effects of dementia reach far and wide into every family affected.

Nevertheless, I appreciate that much of our existence is measured in monetary terms, not least when trying to encourage governments to fund care and support, and where dementia care is concerned there is a lot that needs funding according to a recent report from the Alzheimer's Society.

Currently people living with dementia and their families are picking up two thirds of the monetary cost of dementia, amounting to £17.4bn. That includes a figure of £11.6bn that represents the contribution from unpaid family carers, who spent 1,340,000,000 hours caring for their loved ones with dementia in 2013 - those hours are the equivalent of more than 150,000 years.

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On a practical level, many relatives have to reduce their hours of work, move to flexible low-paid employment or give up their jobs completely to become a carer. There are also costs associated with relocating when housing arrangements aren't supportive for a loved one with dementia, and on-going modifications of the home including purchasing technology or equipment. And that is to say nothing of the other pressures and strains put upon the lives of everyone personally affected by dementia.

If you develop another terminal disease, like for example cancer, you can currently expect NHS funded care (albeit some drug treatments may not be available), and even when it comes to end-of-life care, you have hospice options that are often unavailable to people with dementia. NHS Continuing Healthcare funding is available to some people who are living with dementia, but that is a minefield of assessment that is the very worst in public sector box ticking, often leaving families disillusioned and angry.

I'm not in any way suggesting that people who develop other diseases and conditions aren't entitled to funded care and support, but clearly there are questions to be answered as to why people with dementia are not entitled to the same. Every type of dementia is a long-term and ultimately terminal disease that affects the functioning of a person's brain and eventually causes severe physical frailty. In the latter stages, immobility, incontinence and repeated infections are common.

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When the care element of dementia support goes wrong, either because family carers can no longer cope or because of failed professional care, the monetary cost on the NHS is huge. Therefore more pro-active, high quality care that enables a person to live well with dementia for longer is clearly going to be a cost-saving in terms of reducing the need for NHS services in the future.

If there were numerous drug treatments, procedures and surgical options the NHS would throw resources at people with dementia, but because their needs are more geared around personal care and support they fall into the gap between publicly funded healthcare and personally funded social care.

It has long been said that if the UK can get dementia care right, then the offer to people with other conditions will be far more effective. I would suggest, however, that we are still failing spectacularly to get dementia care right. The numerous families that contact me, and indeed professionals frustrated by systems and funding issues, are testimony to that.

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The need for integrated, proactive services has never been greater. They do exist in some parts of the country, but it remains a postcode lottery as to whether you are geographically fortunate. We will have to wait and see if the changes that will be brought about by the Care Act give families any more clarity, reassurance and access to high quality care and support. Many people more expert than I am on the Care Act remain very sceptical.

Meanwhile, I fear that the real 'cost' of dementia - the cost you can only really calculate when you are in the midst of the lived experience that thousands of individuals and families are trying to navigate their way through right now - is something that only those who have had that experience really understand.

How that is translated into policy that makes a real and lasting difference to people living with dementia and their families is something I anticipate seeing very little action on until after the 2015 election. The importance of keeping dementia on the agenda in the run-up to and the aftermath of that poll cannot be overestimated. This is one 'cost' that is not going away any time soon.