Club eases the pain of dementia

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BBC News

The families of people with dementia often do not get the support they need until a crisis occurs.

That is the conclusion of the Nuffield Council on Bioethics, an ethics think-tank.

I went to meet a group of carers at a community centre in east London.

The Monday Club are, on the face of it, a jolly group.

Card games are being played - and Harry Brown has brought along some apples from his garden.

The weekly group is run by the Alzheimer's Society and supported by the local council in Redbridge.

It provides solace, companionship and fun for dementia sufferers and their carers.

Difficult circumstances

These are strong people, often coping with very difficult daily circumstances.

Gerald Hale, who was a fireman for 35 years, is joining in the sing-song. He attends the group along with his wife of 62 years, Pat.

He is now 84, smartly dressed and was diagnosed with dementia about a year ago.

Mr Hale told me: "The main thing is not knowing or remembering anything. Your life is very limited.

"I dread to think about the future."

The illness is further along for the family of Gunvor Lasocki.

They are familiar with the ethical dilemmas mentioned in the new report - such as, when is it acceptable not to tell the truth?

Daughter Gillian has spent the past three years looking after her 86-year-old mother, whose parents died some time ago.

She said: "My mother gets inconsolable if anyone tells her they're dead. She asks about them nearly every day.

"We decided we had to lie to her, because what's the point in upsetting her?

"I hit on the idea of telling her they're on holiday. She's quite happy because she thinks they'll be back soon."

Continue to come

Some members of the Monday Club were caring for partners or family who have since died.

They are still included in the activities - and are an important source of support for the more recent members.

Coral Kathro runs the club for the Alzheimer's Society.

She said: "People come here and they are totally accepted - whatever their disabilities or problems.

"They become part of a family of concerned friends."

The Nuffield Council on Bioethics is also concerned about difficult practical decisions that families face - such as, when should the sufferer give up their privacy?

In need of help

Peter Pettigrew brings his wife Mary to the Monday club.

He is proud that he has done all the cooking, cleaning and personal care during her seven years of illness.

But he sometimes feels isolated and it is a strain - his eyes well up as he talks to me.

However, Mary will not tolerate having a stranger to help.

He said: "When she came out of hospital, they sent someone to change her in the morning and put her to bed at night.

"But she wouldn't have that, so it only lasted a couple of days.

"She likes her privacy still. She won't have anyone else in the house. So I'm just there on my own."

The UK's health departments are trying to develop policies that will respond effectively to dementia as the number of cases grows.

However, the authors of the Nuffield report point out that Gordon Brown's newly proposed Care Service for England would help people only in the later stages.

The report says people with dementia can still have a reasonable life.

Getting to that point seems to still be a case of "work in progress".