In every community, often silently and heroically, are people who voluntarily care for a vulnerable loved one. For me personally, those who care for a vulnerable loved one are truly inspirational. In the context of a vibrant rich economy, most carers receive abysmal remuneration regarding the contribution they make to enhance a loved one’s life.

It goes something like this. You wake up. It’s the middle of the night. You are in your own home, but you don’t know where you are. You decide to get dressed but you can’t find your clothes. You decide to go downstairs but you can’t find the stairs. Eventually someone comes to you but you don’t know them. You’ve never seen them before. They tell you they are a son or a daughter, a husband or a wife. And they coax you back to bed.

That mini drama is re-enacted in different forms across the country every day and every night and every hour of every day and every night. Because across the country thousands of people, old and not so old, suffer from some form of dementia or senility, the best known of which has been labelled Alzheimer’s Disease.

Such multiple conditions are not always, as people sometimes think, an advanced form of the kind of forgetfulness or cognitive deterioration associated in the common mind with the passing of years. More often than not that isn’t the case. Apparently, there’s no direct relation between old age and, say, Alzheimer’s as the condition described in the first paragraph above can also inflict people in their thirties. With Alzheimer’s, the memory collapses, the ability to reason is diminished and the personality can change. Alzheimer’s gets progressively worse. It is incurable and it ends in death. It may not be clear whether it’s hereditary or whether it can be brought on by stress. It has to do with the formation of some kind of plaque in the brain and scientists are researching a way to check or eliminate that plaque.

But there is hope. While there is at present no cure for, say,  Alzheimer’s disease, there is medicine available that can  temporarily improve some symptoms. And there are cognitive stimulation therapies becoming available. But while the scientists do their research, those with dementia in many of its varied forms can face a bleak future and those who care for them can face particular problems and special needs. For the carers of Alzheimer’s patients and others, a further dimension is the important question of who is going to care for the carers?

For the carers of Alzheimer’s patients and others, the usual often difficult demands associated with caring can be exacerbated. In this instance it isn’t just a question of keeping an eye on them, ensuring that they don’t come to any harm, washing, bathing, putting them to bed. It’s also repeating the same thing, possibly multiple times a day. It’s trying to find a predictable reaction in the troubled, unfocussed eyes that stare vacantly into the distance. Allied to that is the change in personality of the patient, the sense that part of them is no longer there, a kind of living death.

There is too the sense of guilt people sometime feel when, with the best will in the world, a satisfactory level of care can’t be offered in the home and a patient with particular needs has to be facilitated in a nursing home. Responsibilities to oneself and to others can sometimes through misunderstanding or insinuation, be wrongly misrepresented as selfishness. There is something particularly heart-rending about a wife sitting in the shadows   talking to a much-loved husband who doesn’t really know who she is – or vice-versa. Or a daughter realising for the first time that the shell of life that now harbours her father has somehow lost the set of personality characteristics that shaped so much memory and so much love. Or even worse still, a mother trying to get some reaction from a son who stares at her as if he has never seen her before. Or the medley of other experiences when the person being cared for is no longer the person they knew.

The temptation is to treat them as unthinking, uncaring, not knowing. As if somehow behind the puzzled eyes there is no thought, no idea, no memory. That may not be the case because the world they now live in is impenetrable to the onlooker. Whatever the loss, they are still themselves, inhabiting a very  private world in a very limited way, but still a world that, for all its limitations, is still their world. Whatever the change they can still throw an eye in a characteristic way, turn the head or even occasionally smile. Lucid moments can be unambiguously cherished like the sun forcing its way through the clouds on a   dismal day. But those of us outside that experience cannot tell the carer of an Alzheimer’s or dementia patient what to be or what to do. It is so easy for those outside this sometimes (or maybe often) grim experience of tangible personal loss to speak words of love and duty, to trot out cliches about responsibility to our own flesh and blood.

Most of us haven’t earned that right and we should respect the difficult landscape that carers inhabit with the grace of our silence. We need to listen to the needs of those who care, not to pry into or analyse from a distance the very personal and private connection between the carer and the cared, and not to pretend that we understand the lonely and often long journey of caring. Budgets and elections, as we know, come and go, and are often full of suggestions about how carers could be helped or rewarded in some way for the work they do. It seems incomprehensible that the hidden heroines (and sometimes heroes) of such care should so often warrant such a relatively poor response in the rich country in which we now live.

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