Dementia patients need our love, too

EVER since the Daily Mail took up the cudgels on behalf of dementia patients and their families, the true extent of the lives devastated by this cruel disease has become painfully clear.

Through their letters and emails, our readers have shone a light into the darkness that surrounds this issue.

Dementia is no respecter of class or creed. It affects people from all walks of life, from the highest to the most humble. The circumstances may vary widely, but the outcome is always depressingly familiar: a crippling loss of identity, a hollowing out of the patient’s character, the devastating sense of loss for those whose loved ones sink into the quagmire of a disease from which there is no escape.

As if all this weren’t bad enough, the emotional and physical pain is compounded, in hundreds of thousands of cases, by financial devastation. Because, as I pointed out in the column that helped kickstart this campaign a few weeks ago, dementia is not considered a primary care need by the NHS.

As long as they have assets of more than £28,000, patients and their families must bear alone the cost of care.

We live in a country where people get boob jobs on the NHS and millions are lost through treating overseas patients who refuse to pay their bills — yet those who have contributed all their lives are denied help. It is a deep injustice.

NO WONDER 160,000 people (and rising) have signed our petition, launched only on Saturday, urging the new Prime Minister, Boris Johnson, to find a long-term solution to the crisis and declare the issue a priority.

As well as exploring a wide range of funding options, such as tax breaks for social care spending, we also want to establish a ‘dementia fund’ to meet the costs of those in crisis now.

But the money is just one aspect. Equally important is our attitude, culturally, to sufferers.

One of the more heartbreaking accounts of living with dementia came this week from Nula Suchet, who recounted in these pages the decline of her first husband, James Black, who began to lose his faculties at the age of 57.

What started with small things

— misplacing his glasses and keys, forgetting to feed the dogs — ended with him in a care home, a husk of his former self.

As well as dealing with the loss of the man she adored, Nula (now married to John Suchet, whose first wife was also taken by the disease) had to endure the behaviour of those around her, who either treated him as invisible, or as a source of embarrassment.

It echoes an experience I had a few years ago in Marks & Spencer. An elderly lady was in the Per Una section, mumbling to herself. I asked if she was OK, and she responded with a string of invective. Initially, I was angry — I had only been trying to help; but then I realised she was, as they used to say, not quite herself.

Afterwards, I felt so ashamed. This woman had once been healthy, like myself. And yet all I had seen was the disease. It’s the kind of response that leads to people with dementia being mistreated by carers, and it made me reflect deeply about the stigma that surrounds sufferers.

If all you see is the wreck in the chair, or the angry, confused person, it’s all too easy to view them as less worthy than the rest of us. In order for things to change,

this must change. The truth is, people with dementia need our respect and love, as well as our sympathy. That, ultimately, is what this campaign is about. That is why your stories matter.