The Alzheimer Society is 20 years old and tomorrow holds its main fundraising event, its national T Day. Winifred Bligh marks the contribution the society has made to helping people with this degenerative brain disease
The scene is not an uncommon one in the large, bright Alzheimer Society Day Care Centre. Mary sits hunched in a chair; her clothes, though clean and attractive, have a slightly rumpled look. She picks continuously at a coloured thread in her skirt, looks straight ahead, unblinking as if nothing is registering, almost as if she is blind, but she is not. She doesn't look ill, but she looks old. Yet she is only 59.
Another woman comes in gently and sits in front of Mary and speaks to her. Her eyes continue to stare straight ahead and she does not respond. There is no movement, no communication. The woman perseveres and eventually Mary smiles. She looks at the woman, who returns her smile. Mary sits straighter in the chair, relaxes and stirs into life.
A small miracle, an everyday triumph. The experts Kitwood and Bredin have written: "As we discover the person with dementia we also discover something of ourselves, for what we ultimately have to offer is not technical expertise but ordinary faculties raised to a higher level, our power to feel, to move, to stand in the shoes, or sit in the chair of another."
Mary is cared for five days a week in one of the Alzheimer Society's dementia day-care centres. Her family bless the society and are immensely grateful for the care and understanding shown to their mother. They say being put in touch with the society was the best thing that had ever happened to them.
This year the Alzheimer Society of Ireland is 20 years old . If Mary had been diagnosed as having Alzheimer's disease 20 years ago, she would have been decidedly better off in the UK. For after the consultant had given his verdict and the words Alzheimer disease were pronounced it was "goodbye" and "fine day to you".
Then what? Nothing, zilch, zero. People needed to know what Alzheimer's really meant, what to expect, how to cope with the changes the time ahead would bring, what services were available. No answers to these questions were readily available. It was a complete limbo.
It was in this climate that two women met in 1982 with the idea of forming an association or self-help group, one with a husband and the other a sister both with early onset dementia. Their aim was to offer information, understanding, and a sense of solidarity to those in a similar situation to themselves. It took them little time to establish that statistics and information on services to deal with this disease were as scarce as hen's teeth.
Initially, letters pleading for information were sent to England, Sweden, Demark, the Netherlands, and America inquiring what facilities, home help, day care, long-stay care they were providing.Of those contacted, the US was most advanced. In 1980 seven family support groups had got together to form a national association, and it was from them the most useful information was received. Armed with this, the Alzheimer Society was set up with its two women members, no money, no premises, no prestigious patrons, but bursting with ideas, optimism and a pioneering spirit.
A SMALL trickle of letters from all over Ireland was being received: one from a baker in Donegal, whose wife had Alzheimer's and wanted to know how to deal with her constant walking up and down; another from a fireman in Cork whose father was affected and whose elderly mother was unable to cope.
Twenty years on, the society has become fully adult. The national office at 43 Northumberland Avenue, Dún Laoghaire, is a powerhouse of activity with a much used helpline manned by trained volunteers.
From Cork to Donegal, 29 branches with 250 volunteers are working hard and maintaining the voluntary ethos which remains the backbone of the society. There are 22 day-care centres where people like Mary are cared for and where therapies maintain the best quality of life for as long as possible.
From the beginning, part of the society's brief has been to make the health authorities aware of the extent of the disease and to seek a coherent policy for dealing with it. The current Action Plan for Dementia, if fully implemented - and I say if - is estimated to cost £46 million over three years. According to Dr Eamon O'Shea, co-author of the plan, it would be money well spent.
Making Alzheimer's a popular issue of concern is not easy. Alzheimer's is not glamorous; it doesn't have the heartbreaking pathos of children's diseases or the terrifying aspect of cancer. Yet we all have friends and relatives some of whom will eventually develop some form of dementia.
The society's plans are as enthusiastic as ever. We want dementia services in every major town. We have come a long way since 1982. As one of the major political parties election slogan declares, "A lot done. More to do". Whatever about them, we at the Alzheimer Society of Ireland will do it.
Winifred Bligh is co-founder of the Alzheimer Society. Further information about the society may be had by calling 01-284 6616;
email: info@alzheimer.ie; website: www.alzheimer.ie