If you were to be diagnosed with Alzheimer's Disease, would you want to be told? It's a deeply difficult question, teased out by a new survey which shows that many people (49 per cent) think the patient should be informed about their condition. The majority (54 per cent) of carers of Alzheimer's patients agree, while just 12 per cent of people think the patient should never be told.
This contrasts dramatically with a similar survey four years ago, when the vast majority of people believed that the patient should never be told.
This seachange reflects a growing consumer movement, partly informed by the Alzheimer's Society of Ireland, which, from small beginnings, now enjoys an annual Government grant of £1 million towards its crusade to help some of the 25,000 Irish sufferers.
"If I was in the position myself, I think I'd like to be told," says Maurice O'Connell, CEO of the Alzheimer's Society. He reasons that an honest diagnosis would give him an opportunity to treasure his life, memories and family while he could still do so, while also enabling him to plan financially for his family. We may want to know, but will our doctors tell us? In the same survey - conducted by Lansdowne Market Research and All Market Surveys and sponsored by pharmaceutical company Pfizer - only 24 per cent of GPs said they would be prepared to tell the patient. And 21 per cent never tell.
Understandably, 61 per cent of GPs believe that the decision of whether to tell the patient depends on the patient in question and his or her family. GPs base their reticence on a fear of creating panic in families of Alzhemier's sufferers, believes Dr Cyril McNulty, a GP with a special interest in Alzheimer's and other conditions of old age.
"I suppose you could say that we are parsimonious with the truth," he confides. "Many patients do not want to know, while another consideration is sending a family into a panic when there is so little that can be done."
While this attitude is "paternalistic", Dr McNulty admits, he and many other GPs believe that the "slow drip-drip" effect of gradually letting the family in on the information is more humane.
However, it may not be until the patient is referred to a consultant psychogeriatrician that the diagnosis is confirmed, by which time the patient may lack the insight to understand the diagnosis. So the opportunity for knowledge passes. Is this merciful or not?
The full horror of being the carer of an Alzheimer's patient is portrayed in a documentary to be shown tomorrow night, Remember Me (RTE 1, 10 p.m.) by award-winning film-maker Gerry Hoban, (who made Black Wind, White Land about Chernobyl). To be on 24-hour call to someone who relies on you but does not recognise you as their spouse or child must be one of the cruellest fates.
Nine out of 10 people believe that Alzheimer's is harder on the carer than on the patient. This is certainly the case with Avril Whitehead, who confides that she hates her father yet cares for him with a dedication that not even her beloved husband enjoys. Her father, George Teale, is convinced that he is living in a badly run hotel.
But Alzheimer's must surely be harder on the patient who is of lucid mind yet knows that he will eventually lose his mind. This is the story of Paul O'Leary, also profiled in the documentary. Paul talks courageously about living with the knowledge that his brain will gradually fail. He has friends with whom he goes hillwalking, but he also has "dark days", when he merely exists and waits for them to pass.
How many of us would like to be in Paul's situation of anticipating mental demise? Dr Des O'Neill, a consultant geriatrician at Tallaght Hospital, tells only one in four of his Alzheimer's patients the truth about their condition. Dr O'Neill communicates the information gently over a number of consultations, talking first about a memory problem and how this might have several causes.
Sometimes a patient will ask point-blank "Is it Alzheimer's?" and in these cases, Dr O'Neill tends to tell such a patient eventually, once tests prove that the diagnosis is likely. (Alzheimer's is a clinical diagnosis based on observation and can be proven definitively only in post-mortem).
Prof Brian Lawlor, a psychiatrist at St James's Hospital's Jonathan Swift Centre, also tends to let the patient and family in on the diagnosis by slow degrees over a number of visits if he feels it is appropriate. He states: "Most advocacy groups are saying that everyone has to be told. From a clinical point of view, it is not as straightforward as that."
In the unlikely event of a patient being treated in the early stage of the disease, and their capacity to understand is unimpaired, they may be told. This picture will change as better treatments are developed to arrest Alzheimer's at an early stage. Currently, two drugs - donepezil and rivastigmine - can buy a patient an extra six to 12 months of useful memory, but they work on only one in three patients. These drugs are cholinesterase inhibitors, which boost the cholinergic system, which is the chemical messenger system that is deficient in Alzhemier's Disease. Vitamin E (an anti-oxidant) and non-steroidal anti-inflammatories, such as ibuprofen, are also useful in combatting nerve cell damage.
Within the next 10 years, however, an effective vaccine or a drug will be developed to halt the progress of the disease. In Alzheimer's, brain tissue degenerates due the abnormal activity of proteins which accumulate in plaques in the brain. Any advance is likely to be in the area of preventing the breakdown of amyloid precursor protein (APP), thereby stopping the deposits which damage nerve cells and cause Alzheimer's.
A lot of research is going on to discover why APP is broken down in the brains of Alzheimer's patients and, while the mechanism is not yet clear, there is a strong genetic link. Alzheimer's not only runs in families, but it also tends to run more often in families where there are people with Down's Syndrome.
As more is understood about Alzheimer's and more effective interventions are developed, Prof Lawlor believes we will grow to think of it as a disability to be lived with, like heart disease. While the thought of losing brain function is more terrifying than losing function in any other part of the body, we should not make assumptions about the quality of life of people with Alzheimer's. Many do enjoy life, within the limitations imposed by their disease, and - Lawlor argues - it is not for those of us with healthy minds to judge the value of such an existence.
Remember Me, 10 p.m., RTE 1, Tuesday. A helpline will be open until midnight 1800341341, and 10 a.m. to 4 p.m. Monday-Friday.
Growing Old With Dignity is a special competition open to transition year students, who are being asked to interpret the concept of growing old with dignity in a visual art form of their choice. Judges will include Raymond Keavney, director of the National Gallery, John Rocha and Shane Lynch. The competition is supported by the ASTI and drug company Pfizer. For further details, freephone on 1800-921772.