Too soon to celebrate Alzheimer's drug
There is no standard procedure for helping those with dementia; it is largely a case of families fig
"Hi, mate, how are you?" is a greeting that has come to haunt me. It came from my dad on a recent visit to the care home where he lives, offering a glimpse of what he used to be like. Dad suffers with dementia. When the family visits he sits, occasionally acknowledging us, but usually just fiddling with things. At his worst, he appears to be in a sort of torment.
News that the University of Aberdeen has developed Rember, a drug that can slow the progression of Alzheimer's disease in up to 81 per cent of cases, will offer hope to millions. This is the first drug to act on the tangles that develop in the brains of Alzheimer's sufferers, tangles that destroy the nerve cells linked to memory and then other parts of the brain as the disease progresses. Rember can stop this happening.
For my dad the discovery comes too late. He has been in three homes since 2005, each providing that bit more care as his condition has worsened. The care assistants see to his basic needs - he's incontinent now - and do their best to stimulate his responses.
Dad was always very much in control. The son of a postman, he worked as a messenger at Mount Pleasant Post Office in London at the age of 14. By the age of 19 he had joined the navy and was flying a Swordfish plane on and off aircraft carriers; he came down twice in the Channel. After the war, he trained to be a teacher and met my mother at a school in east London. He later became head of Elmhurst Primary School in Upton Park, near West Ham's football ground.
He was a good father. If he were able to recall, I don't doubt his happiest memories would be of the times our family spent on the beaches - he loved swimming - of Camber Sands, Hastings and Bexhill in the school holidays.
He started to show serious signs of dementia around 2001, and began going downhill rapidly in May 2004. Eighteen months later he went into the first home. Visits to care homes are hard on the family, but we don't know how dementia sufferers feel. They may not be in torment at all, but off in a world where they are happy. There are moments of lucidity.
There are 700,000 dementia cases in the UK, but it affects the lives of around 25 million people (42 per cent of the population) who have a friend or family member with the condition.
Carers need far more support. There is a strong case for local authorities or health trusts to appoint care advocates for those in need. Looking after my dad as he plunged deeper into dementia has taken its toll on my mother's health. She is now nearly blind and lives alone after 52 years of marriage, supported in the main by family and the local church. On bad days, she says she wants to go into a home herself.
There is no standard procedure for helping those with dementia; it is largely a case of families fighting the corner for their loved one, and it is often a case of who can shout the loudest.
This alone suggests that it may be too early to celebrate the development of Rember (which, in any case, will not be available for at least another four years). No doubt its effectiveness will be dependent on early diagnosis. There is also the precedent of Aricept, a drug shown to improve the memory of those in the latter stages of the disease: access to Aricept on the NHS was restricted on the advice of the National Institute for Health and Clinical Excellence.
Rember may offer future hope to millions but there needs to be a debate now on the need for a more proactive approach from medical and social services to provide help and support for those with dementia, and their carers.
Paul Donovan writes weekly columns for the Irish Post and the Universe