Malcolm Pointon was a brilliant man. After gaining a first class honours degree in music he became a composer, a lecturer and even worked for BBC radio.

But all that changed when Malcolm was diagnosed with probable Alzheimer's when he was just 51 years old.

A few years after Malcolm and his wife Barbara received the terrible news, they met filmmaker Paul Watson and decided to make a documentary about dementia and its effects on a family. After four and a half years, the film, Malcolm And Barbara... A Love Story, aired on ITV to much acclaim.

Malcolm died in February last year. Paul had remained a close friend of the family after the original documentary was transmitted, and continued to film as Alzheimer's took control of Malcolm's mind, body and marriage. His second documentary was shown on ITV1 last sumnmer, Malcolm And Barbara: Love's Farewell.

"I wanted to do it because I wanted the public to share in our situation, to begin to really understand what it's like to live with dementia - the effect on both the person with the illness and on the carer," Barbara says. "At the back of my mind was the fact that this is such a black and horrible illness, there's got to be some good to come out of it somewhere.

"Dementia is the second biggest killer: heart disease one, dementia two and cancer three. Yet if you compare the funding for research, treatment and services that those other killers get, dementia is absolutely minuscule. I hope this film will open the public's eyes to that.

"I cry every time I watch it," Barbara admits. "Obviously it brings back, in a funny kind of way, happier times with Malcolm. Over 15 years, which is the time I was caring for Malcolm, you tend to forget what it was like. One of the hardest parts for me to handle was the aggression, when somebody who is so gentle and so loving turns on you."

To begin with, Malcolm's illness identified itself in small ways - he'd lay the table the wrong way round or get lost while driving. However, as the months and years went by he got increasingly awkward and aggressive.

The film shows Malcolm pulling Barbara's hair while she undresses him for bed and grabbing her wrists and fingers until she screams out in pain. But the worst was still to come.

"People have got this idea of Alzheimer's as somebody sitting in the corner losing their marbles, getting a bit forgetful and a bit confused." Barbara says. "I had no idea when I started on this journey that my husband would land up in that state, that Alzheimer's would rob him of his speech, his mobility, his ability to swallow. Eventually, I think the ravages were as great as though he had actually been suffering from severe cancer.

"Dementia is a terminal illness," Barbara adds firmly. "Some people think of it just as a mental health condition like depression or something. It's not. It's an organic disease of the brain and it destroys the brain and kills you."

Indeed, that is exactly what happened to Malcolm. Unable to talk, walk or eat, he became a shadow of his former self, and was reduced to a skeletal figure lying in bed, having to be hoisted out so it could be made, unable to do anything for himself. Did Barbara ever consider helping her beloved husband escape his torment?

"I'm sure that the old Malcolm, had he made a statement before this illness, would have said, 'If I get to the point of being completely beyond it, please try to hasten my end,' I think he would have wanted me to do that," she reflects. "If you or I were in the situation Malcolm was in but still had all our marbles, we could rationalise and do things like refuse to eat to take an exit. Malcolm's rationalisation had gone out of the window.

"Watching him was fascinating," she continues. "What took over was an almost animal-like instinct of survival. Malcolm recovered from chest infection after chest infection through sheer willpower and determination. I was left thinking, if he still wants to live, who am I to take that from him?

"But in January with this last infection, he was really weary and wanting to give up. I had to make a very difficult moral decision, because it's his life I'm talking about, not mine. I decided he had reached the point where he had had enough, so I let nature take its course. Malcolm's signals were clear, he'd had enough."

Instead of rushing him to hospital where Malcolm would have received what Barbara describes as "aggressive intervention", she decided to let him slip away at home surrounded by his family.

Although early publicity material for the programme stated Malcolm's actual death was to be shown, it has since come to light that the moving climax of the documentary was filmed three days before he passed away. However, Barbara does not regret allowing Paul access to her husband on his deathbed.

"We film birth on television but we are very prissy about filming death, and yet they are the only two things in life which are sure for any one of us," she says.

"It was as though Malcolm had been imprisoned by Alzheimer's, his whole life had shrunk to being in this one room," she continues. "We couldn't even take him outside because he was terrified of the sound of aeroplanes and of the wind in his face because he couldn't rationalise them.

"The moment of freedom for Malcolm was the point of death. It was like a bird flying out of a cage with the door open. That for me was the only way of feeling that it had come a full circle."

l Do people who fund their own care have more choice than those who have theirs paid for by a local authority?

Not always. Some local authorities have been piloting a scheme where individuals have their own "budget" and can plan for their care needs within that budget. If these are not available individuals who are eligible for social services funding can receive direct payments enabling them to purchase their care from anywhere they wish.

Purchasing care from an independent domiciliary care provider such as Candlelight Homecare Services (www.candlelightcare.co.uk) can be the ideal solution, giving you flexibility without the problems of managing your own staff.

Using a registered care provider guarantees that you will have fully vetted and trained staff providing your care, tailored to suit you.