Dementia Costs UK £23 billion a year

www.dementia2010.org Dementia 2010: The Economic Burden of Dementia and Associated Research Funding in the UK makes for interesting reading. The report, produced by the University of Oxford for the Alzheimer’s Research Trust, estimates that dementia costs the UK £23 billion per year. This cost is twice as much as cancer, three times as much as heart disease and four times as much as stroke.

The introduction to the report also provides a salutary reminder of what dementia really is “a group of symptoms caused by the gradual death of brain cells, leading to the progressive decline of functions such as memory, orientation, understanding, judgement, calculation, learning, language and thinking”, and “a terminal disease where patients are expected to live 3 to 9 years after diagnosis.”

Beneath these headlines figure lies some nuanced and important detail. For example of the £23 billion annual cost relating to dementia, 95% is defined as social care (55% borne by unpaid carers and 40% in institutional care costs), and only 5% in health care costs. The proportions in the three main other disease categories (cancer, heart disease, and stroke) are starkly different. All three have much higher health care costs and staggeringly smaller social care costs. For strokes social care costs account for 27% of the total, for cancer only 5% and for heart disease they are only 2%.

Such disparity reflects the acceptance of all three categories automatically as diseases to be treated and cared for within the NHS system and the positioning of dementia as a social rather than health care need and priority.

As well as the staggering cost, bear in mind that the vast majority of that ‘social care’ cost is borne directly and indirectly by individuals with dementia and their families paying for their own care and means tested. Despite the unambiguous definition of dementia as a “terminal disease” these figures reveal a clear bias within the system not to take dementia seriously as a disease to be cared for within the NHS with that treatment free at the point of delivery.

Snapshot Number 2

It is August 2008. A few months after her strange phone call to me in France denying all knowledge of our holiday, my mother’s behaviour has become increasingly odd and her health, both physical and mental is starting to cause us and her friends some concern.

My mother has started to complain about her volunteer position, a post she had enjoyed enormously for the past two years and where she had forged a number of new friendships. She tells me she has given in her notice and will not be going in anymore. She has also become quite emotionally unstable – calling me frequently at work and at home, saying she has fallen out with various friends, crying and then hanging up. At the same time, her friends are calling me saying she had told them she has fallen out with me. She has a ruptured baker’s cyst on her leg and although this clears up quickly and completely, she repeatedly tells me and others that she is completely immobile and I should come up immediately to look after her or that she needs to go into a home.

Things come to a head in early August when I receive a call in the late morning from a paramedic in my mother’s house. My mother has called 999 in some distress, saying she has banged her head and fainted. The paramedics can find no evidence of this but my mother is insisting she be taken to the hospital straight away. The paramedics calmly explain to me that of course if my mother insists, they will do this, but that they have checked and checked and can find no evidence of physical harm. They have given her some medication to calm her down. I speak with my mother and realise she is fine physically but clearly in great distress mentally. I say I will come that evening and she agrees to stay in her home. I call my mother’s GP straight away who agrees to go round immediately. She calls me later in the day to say she has made an ‘urgent’ referral for my mother to the Community Mental Health Team.

Unsurprisingly, I decide I have to go north straight away.

Snapshot 1 The First Signs

It is summer 2008. My mother is living quite happily and indpendently as she approaches her 78th birthday. She is living in her own flat, she has a wide circle of friends, she is physically active, she comes to visit us and others around the UK travelling by herself, and she is volunteering for a charity in their offices 2 days a week working alongside a team of people at least half her age. Of course her life (like all of our lives) is much more than this bald description, but the key point is that she is about as far from the prevalent stereotype of an 'elderly' person as you could get, with no mobility issues (her flat is on the first floor), no isolation, no lack of independence.

Out of the blue, my mother phones me when we are holiday in France, having received our postcard. She is absolutely insistent that we hadn't told her we were going away. I know I have been busy, but of course this is not the case. I laugh and say don't be so silly, we've visited friends she knows, we've called her from the holiday. My mother hangs up having insisted again crossly she didn't know anything about this and we have hidden it from her.

Some background to this is that my mother has had mental health issues for much of her life, but that through medication and the oversight of a thoughtful family doctor, she has not been debilitated by these apart from a few points in her life. However, as her daughter I think of this within the context of her sometimes abrasive personaility and don't focus on the rather different tone and content of the conversation - my mother is not cross that we are in France and she is not, she is absolutely unable to recall several conversations.

Neither of us know this at the time, but that phone call is the start of a descent into 'care for the elderly' as my mother's physical and mental health deteriorates rapidly and she is immediately 'recategorised' as a frail, elderly person in need of care - for which she must pay - rather than a woman with physical and mental health needs to be 'treated' by the NHS. Our parallel descent into the Circles of Hell has begun. Alas, unlike Dante, we have no guide and we quickly realise that an approach based on rationality, professionalism and compassion is a modern heresy for the NHS and Social Services representatives we encounter.

Who We Are

My mother who was born in 1930 was 40 when I was born, so for her generation, she really was quite an elderly first time mother. Now of course, in this age of professional women, IVF, yummy mummies, that's not unusual - in 1970 it was. I am an only child.

So now I am nearly 40 myself, we are the classic dislocated family - I live and work in the south of England, my mother lives by herself (my father died in 2002) in the north where I am from but where I have not lived since I set off to university aged 18.

So we don't fit the typical media and social image of the ‘carer’ and the ‘dementia sufferer’ with perhaps a rather older daughter or a spouse looking after their relative at home. Importantly, not just for us but for a wider audience, we are more like the predicted demographic for dementia in the coming 10-20 years when the current reliance on informal care will not be as prevalent due to working families and families living apart from each other.

And as a result we need to focus NOW on the ticking time-bomb that is our collective lack of understanding of, or provision for, the real needs of people with dementia – with numbers estimated to go from 750,000 currently to over 1.4million within the next 30 years.

My Name Is Not Dementia

Today the Alzheimer's Society published their inportant report My Name is Not Dementia - full details at http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200149&documentID=1339.

Importantly this focuses on the stereotypical and widespread sense that once a diagnosis of dementia is confirmed, quality of life issues for the person with dementia are not important. It also reflects on the different perspectives of those with dementia from those with a duty of care towards them.

As Sir Terry Pratchett says in his Introduction to the report:

"Dementia is all too often a fact of life, and no longer out of sight and out of mind. And it requires not just care but also understanding and, to be frank, policing as well. There is an opportunity here to give the lie to some of the clichés of care. We have to learn to be good at it. "

Dementia Tax

The Alzheimer's Society position paper on charging for care relating to dementia http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1069 is very clear about the financial impact on elderly people with dementia.


"Charging for care affects people with dementia and their carers more than older people with other medical conditions and amounts to a 'dementia tax'. In addition, people with dementia and their carers are paying for services that often do not deliver good quality care."

Dementia is a physical disease of the brain, yet it is not regarded systematically as a health issue and therefore the responsibility of the NHS. Rather it is treated as a 'sign of ageing' and therefore as a social care issue with needs to be met by Social Services and so subject to means testing.

This is not just about who pays, it is also about a system designed to relegate and minimise the real needs of people with dementia - to create as the Society says a double layer of discrimination. This sees people paying for their care stemming from their illness and not having access to relevant care anyway - apart from in a few englightened, positive (and expensive) nursing homes specialising in dementia.

The lucky few can pay for the care they require 'at the point of need' - the majority, despite having through National Insurance contributions paid for a National Health Service, are denied health care 'free at the point of delivery' and are left to pay for their own care.

Should you be Paying for Care?

The Alzheimer's Society has recently begun to focus on the core inequalities within NHS Continuing Care decisions, treating the needs of those with dementia as 'social' rather than 'health' needs and therefore minimised within the assessment process. One very real outcome of this semantic confusion, is that termed as a 'social need' it is to be delivered by Local Authorities and is subject to means testing.



They have a good section on their website on these questions and also run an excellent Volunteer-led telephone helpline on NHS Continuing Healthcare. The very fact such a dedicated helpline is needed tells its own tale, and the individuals who take the calls all speak from personal experience.

When I have managed to resolve the issues of care for my mother, I will be volunteering on this and helping to advocate for those without support.



http://www.alzheimers.org.uk/site/scripts/downloads.php?categoryID=200203

So what's this all about?

In summer 2008 my mother (then aged 77 and living very independently) went suddenly into a kind of breakdown - she stopped eating, told her GP she felt suicidal, lost some of her mobility, and started to behave quite oddly, including forgetting things she had been told and also displaying distinctly worrying and clearly uncontrollable emotional reactions to situations.

So you would think that a woman of her age, with a history of diabetes and high blood pressure, displaying not just anxiety and depression but also new issues with memory and emotional processing, might raise some flags in the minds of the physical and health professionals brought into her orbit. One likely scenario, given the sudden and stepped progression, would be to investigate whether she had suffered from any vascular issues and perhaps was showing early onset of vascular dementia in light of her hallucinations as well. Instead, the response was to put in thrice-daily visits from Social Services carers who each spent about 15 minutes with my mum to make sure she was eating, and under whose care she lost 2 stone in a month. And that was the beginning of my mother’s needs being minimised as ‘social’ rather than ‘health’ - as is currently the case for so many people whose HEALTH needs as people with dementia are currently being unmet and whose needs are not just being overlooked but are being wilfully ignored or ‘not seen’ by those in whose hands their care is placed.

That was the start of a (so-far) 18 month labyrinthine descent into the nightmare that is the current state for the majority of elderly people who begin to experience the illness of dementia - yes an illness, a terminal illness of the brain, not 'memory issues' or 'natural ageing'.

At every stage, we have experienced 'not seeing' of my mother as a person, 'not seeing' of the illness eating away at her personality and her independence, 'not seeing' of the need to provide timely and supportive care for a woman with an incurable illness called dementia. Now imagine replacing 'dementia' in that sentence with another terminal illness and you start to see the collective 'not seeing' that is going on, You also start to see the medical and human neglect of a duty of care to over three quarters of a million people currently living with various forms of dementia in the UK.

This blog will set out our dual journey and we hope will pull back this veil of ‘not seeing’ and unmask it for what it is: a deliberate relegation of the needs of those with dementia, mostly for reasons of cost, amounting to a tax on dementia and an unlawful avoidance of caring for their health needs within the NHS.