We're too scared to face up to Alzheimer's disease

From a speech by the actor, Tony Robinson, given to a conference at Church House, London,to mark Alzheimer's awareness week

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There are lots of experts in Alzheimer's disease around today. Doctors and psychiatrists and nurses and care workers and dieticians and therapists and politicians. But I'm just as much of an expert as they are.

There are lots of experts in Alzheimer's disease around today. Doctors and psychiatrists and nurses and care workers and dieticians and therapists and politicians. But I'm just as much of an expert as they are.

My father had Alzheimer's. I'm an expert in the isolation experienced by families and carers. I'm an expert in the frustration of not knowing where to turn to for help. I'm an expert in the anger of knowing that society is not prepared to invest the resources that old people with dementia need. And I'm an expert in indifference: the indifference of some of the professionals that my father and I encountered in trying to get the health care and advice that people with Alzheimer's disease need and deserve.

I did get help from a few of the "golden people" - good people who appeared from among neighbours, family friends, staff in the care home, even from my children, his grandchildren.

It was only later, when I learnt more about this disease through the Alzheimer's Society, that I realised society won't face up to Alzheimer's because we are so terrified of it. So we pretend it isn't there. But if we start addressing the fear, it loses its power, and Alzheimer's becomes just another thing, another problem we have to deal with in our lives and relationships.

That's why I'm supporting Alzheimer's awareness week and the report Food for Thought. Reading the report, you cannot help but be moved by the stories it contains. I hope that the report, launched today, will go some way to improving the lives of people with dementia in care homes and hospitals and the advice and support provided for carers at home.

By concentrating on the importance of food in our lives, and its contribution to quality of life, the report reminds us that people with Alzheimer's are still people with the right to choose and enjoy what they eat. Food for Thought reveals, alarmingly, that many people with dementia are at risk of malnutrition. Four thousand people responded to the survey. Four out of five of them said they were worried about the person with dementia eating and drinking. Over 90 per cent of professionals said they had concerns. Dementia causes changes in the brain, which mean people forget how to shop, cook and even how to eat. It can also cause them to change long-held food tastes. People living alone may forget to eat, or eat the wrong foods or out-of-date or uncooked food.

People in care homes and in hospital, sadly, often experience lack of choice, poor-quality food or even not enough to eat and drink. Carers - both professionals and family members - need to understand how dementia may affect eating and drinking behaviour, so that they are better equipped to deal with the changes.

I believe, with the Alzheimer's Society, that we need to do more to recognise the importance of enjoyable, nourishing food in everyone's lives, including people in hospital and homes.

We need the resources to provide choice in what and where and how people eat, and we need to improve the training and pay and status of the workers who deliver that care. The report shows that pockets of good practice exist. We need to build on them.

Once, I took my father out from the care home for a cream tea on a Sunday afternoon. There was rich, crumbly scone and bright-red jam and luscious, thick cream. And I broke the pieces up and put them in his mouth. Something about that experience suddenly helped him to reconnect with his life. We talked and laughed for an hour. I was not a carer any more; we were just two people talking and sharing a cream tea.

So when you go to visit your relative, if they are in a home, share food with them - half a glass of sherry, raspberries, chocolate. Food is a pleasure. It should remain a pleasure. But it is also a crucial part of our social lives, and therefore vital to those for whom communication has been made difficult by the bewilderment and fear of Alzheimer's disease.

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