Dementia : An Analysis Of This Terrible Illness Viewed From The Outside

**Dementia is our collective responsibility. We can’t ignore it any longer.

Now the leading cause of death in England and Wales, dementia need not be a terrible sentence endured alone.**

( The BIG question … cancer and dementia are both illnesses … why is one treated and funded differently to the other ??? … Green Paper thread : )


**_There’s a silent crisis in our midst. Often cunning and stealthy like Grandmother’s Footsteps, sometimes swift and brutal, dementia is all around us. One in eight people die of it. In the UK, a person is diagnosed with it every three minutes. Yet we are still collectively failing to acknowledge this self-demolishing illness, which is now the largest cause of death in England and Wales and the one we most fear. Why?

I’ve recently been doing talks around the country as part of John’s Campaign (named after my late father, who lived for 10 years with the disease), which I co-founded to encourage the NHS to collaborate more with families in the care of dementia patients. There is always time given to questions from the audience at the end. Often these turn out not to be questions at all, but confessions, or acts of bearing witness, or simply pleas to be heard, understood, recognised.

In a hall in London, a young woman puts up her hand, stands, opens her mouth, then instead of asking a question she bursts into tears. In a church in the north of England, an old woman speaks of how for 15 years she cared for her husband with a particularly savage form of early-onset dementia until he died and how she was now the sole carer for her son, who has the same illness.

She speaks with a terrifying calmness; it’s only when those around her offer help that her face crumples in grief. A man with white hair asks, “What shall I do? What?” A daughter asks, “How do we tell him what is wrong with him?” A son asks, “How long can it last?” He also means, “How long can I bear it?”
Dementia is a terminal illness; there is no cure yet, only care. It usually comes gradually, a radically slow-motion form of dying in which the patient is increasingly at the mercy of those who look after them. Along with its particular medical symptoms, it can gather up fear, guilt, shame, loneliness, and a desolation that spreads out from the person who lives and dies with it to the people who love them. Its costs are enormous – not just the staggering financial cost to the individual and their family and to society, but the psychological and emotional ones.

We turn away from dementia because we fear it and feel helpless in the face of its advance. It is not simply that it is so common (about 900,000 people in the UK have the diagnosis), but that it uniquely threatens our identity and reminds us of our vulnerability. We spend our lives building up our defences and learning how to be a social being: we are continent; we keep some thoughts to ourselves; we have secrets and compartmentalised lives; we tell the necessary lies and perform the self that we want to be.

All of this control gradually (or sometimes not so gradually) unravels during the dementia years, until at the end the boundaries are breached so that the self pours unmediated out into the world, the world flows into the self. It can be terrifying to see a person in the end stages of dementia because they show us the chaos and shattered meanings that always lie just beneath our own constantly patrolled surface. We know they could be us one day; we push away that knowledge.

We live in a society that values youth, success, health, vigour, self-sufficiency and purpose. So what about the person who is old, frail, confused, increasingly dependent on others? And what about ourselves when we come to that state, as most of us will, whether we have a diagnosis of dementia or not? Perhaps we fail to properly acknowledge dementia because to do so would be to acknowledge our own vulnerability.

The frequently demeaning terms for the man or woman who has advanced dementia (they are bed blockers; they have lost their marbles; lost the plot; they are vegetables; the old dears; old fools; bodies in a bed; burdens on the state; are no longer “us” but “them”) reduce them to objects, not subjects of their own lives. As objects, we can ignore them, and ignore our future disgrace. In making them less than human, we make ourselves so as well.

Dementia does not just happen to old people – around 5% of people with Alzheimer’s are under 65 – but it usually does. It is easier to turn our faces away from the suffering of the old; even the old don’t feel themselves old. Moreover, people who have dementia are quite often unable to speak for themselves. They, and often those who care for them, become missing people. The illness progresses out of sight: in kitchens and bedrooms, in residential homes on the edges of towns, in hospital wards, on the fringes of our collective consciousness.

Dying is what we all do, but we need to do it better. The diagnosis of dementia need not be a terrible sentence, but the beginning of a new chapter. People can live well, happily and adventurously with it for years and even decades. They can also live in loneliness, loss and desolation.

One day there may be a cure for the illness – or many cures, because there are many different forms of dementia. For now, there is only care. Across the country, in thousands of homes, men and women are invisibly performing this most difficult act of care with scant support. They often labour alone, feeling that it is an individual piece of unfairness and bad luck, one of life’s ambushes.

Dementia should be and must be our collective responsibility. A good place to start is in collectively facing up to the fact that it is in our midst and that each year hundreds of thousands of men and women are living with it and dying with it. If not you, someone very near you. If not now, soon.

• Nicci Gerrard is the author of What Dementia Teaches Us About Love._**

Brilliantly written.

Yes, never seen better.
For all the talk, talk is the PM going to act ?
But how?
Insurance, yes, but tax to start with until insurance kicks in.

Mmm … insurance ?

Is our NHS funded by insurance or … through general taxation ?

The most controversial bit in that Green Paper thread.

The more illnesses they find cures for, the more operations than make untreatable illness no longer a death sentence, the more of us will live much longer, and then only brain failure is left to kill us.
I don’t have time to look at official figures, but know that the average life expectancy now is a lot higher than 100 years ago.


I don’t have time to look at official figures, but know that the average life expectancy now is a lot higher than 100 years ago.

Yep … quite an improvement , BB … although it still depends a lot if one is rich or poor :

Life expectancy gap between rich and poor widens - BBC News

**We must redouble our efforts to help dementia victims – Alzheimer’s Society chief executive Jeremy Hughes.

Since March 2017, people with dementia have spent more than one million unnecessary days stuck in hospital beds, despite being well enough to go home, at a cost to the NHS of over £400m.

This can’t go on.** >


The Alzheimer’s Society’s Fix Dementia Care campaign is calling on the Government to provide a long-term funding solution to end the social care crisis.

Government plans have been repeatedly delayed and we now need an immediate investment in an NHS Dementia Fund, to address the most urgent needs, improving quality of care for people with dementia across the country.

A diagnosis of dementia is life changing and Alzheimer’s Society is there to support people through the adjustments to everyday life that become necessary. It may explain why everyday tasks like going to the shops or cooking a meal have become more challenging, but the implications of that diagnosis not only affect the rest of the individual’s life and how they live it, it also has a massive impact on a family’s finances.

The money that has been saved for a long and happy retirement – and perhaps to leave a legacy to the children – is instead swallowed up in care costs. The NHS doesn’t pay for social care – the individual and their family are the ones who have to spend their own hard-earned savings to cover the bills.
Dementia is, and has long been, a most discriminated-against condition. While the NHS provides free treatment for those diagnosed with heart disease or cancer – and rightly so – people with dementia are left at the mercy of a broken social care system. Despite being caused by diseases of the brain, dementia largely requires a ‘social’ rather than just a ‘medical’ response. As a result, a diagnosis brings financial punishment.

This absence of state support for vulnerable people with dementia is an embarrassment. People are being forced to sell their homes and use their entire life savings just to pay for their basic care. Since the Green Paper on social care was first promised in March 2017, families living with dementia up and down the country have spent £15bn out of their own pockets on care costs.

And it’s not just people with dementia paying the price, the NHS is too. Alzheimer’s Society research found that, in just one year, over 70,000 people with dementia went into A&E because inadequate, under-funded or scarce social care left them vulnerable to avoidable emergencies like falls, infections and dehydration, at an estimated cost to the NHS of £400m. Stories like that of an 82-year-old rushed to hospital in a critical condition, barely conscious and hallucinating, because carers failed to notice or treat an infection, are tragically too common.

Surely we can do better than this for the 850,000 people in the UK living with dementia?

Sixty per cent of homecare recipients and 70 per cent of residential care residents have dementia; the social care crisis is a dementia crisis. There just isn’t enough money in the system to support people properly, and we can’t keep leaving it to those people unlucky enough to develop dementia to pick up the bill.

This is why Alzheimer’s Society is demanding long term social care reform, and calling on the Government to sustainably fund dementia care for the future. We need bold, decisive action and cross-party support to find a solution to funding social care that pools the risk of catastrophic dementia costs across society. By 2021, one million people in the UK will be living with dementia, and they will all deserve good quality social care.

But while a longer-term sustainable solution is found, we can’t afford to wait.

Alzheimer’s Society is calling for a dedicated NHS Dementia Fund to provide a lifeline to hundreds of thousands of people living with dementia who have already waited too long for decisive, political leadership on social care.

The dementia care system needs a financial boost now, paid for from unallocated money in the NHS Long-Term Plan, which puts people at the centre of their own care. This will give control and choice to people diagnosed with dementia and their families, supported by a team of professionals. The fund would allow people to access care earlier and, in the long term, would save the NHS money by cutting unnecessary hospital admissions. There is already overwhelming cross party political support for this proposal, with over 180 MPs backing the call.

The problem of social care and inadequate funding has been ignored for decades. It needs more than a sticking plaster approach, it needs long-term planning. Alzheimer’s Society is campaigning for a taxation solution or a system of auto-enrolment, similar to pensions, that would share the burden of dementia care costs across society, rather than it falling on the shoulders of those who are already coping with life with dementia and the personal challenges a diagnosis brings.

Jeremy Hughes CBE is chief executive of the Alzheimer’s Society.