When she was in her late forties, Brenda Hounam’s life in Paris, Ontario, was busy and fulfilled. She worked as an accountant, capitalising on an ability to add, subtract and multiply figures in her head. Her children, Heath (20) and Dallas (19), were reared, and her schedule included 20 hours voluntary work a week fund-raising for local charities. It’s an irony now that one was The Alzheimer Society.

Gradually Brenda found her mathematical prowess deserting her. Then simpler calculations began to be a struggle and she needed a calculator. Other mistakes niggled. “I misplaced things at home. I burned meals on the stove, I forgot to turn off taps.I forgot to pay bills.

“I put it down to tiredness and stress. But there were other things happening. I would hold myself together at work and when I got home, let go of my emotions. I am a parent who never raised her voice to her children, suddenly here I was being angry and volatile. Heath was living at home, Dallas away at school, I would see the look on his face when I began shouting, and feel terrible. So it was a real vicious circle.

“The collateral damage of this disease is what it can do to family and carers.”

This latter realisation came later. Back then, she went to the family doctor looking for answers, but not telling the whole story. “I said I was tired. I never really owned up to everything going on.” Months went by, life became more difficult and finally Brenda took sick leave until she could sort out her problem, still believing she had a difficulty capable of sorting.

Eighteen months and 127 medical appointments later, early onset Alzheimer’s disease was diagnosed in 2000.

‘Eighteen months is quick for diagnosis. One of the difficulties is that there is no definitive test for Alzheimer’s” (except for an astronomically expensive brain scan) “and doctors are still reticent to suggest the possibility to patients. Diagnosis is by elimination. I had to go for a lot of cognitive testing, including a referral to a geriatrician.

“One of the best things that happened the night before that appointment was my children asking if they could go with me. They suggested making a list of the changes they had noticed in me to show to the doctor. They read their lists to me, and it must have been one of the hardest things they had to do. It was very emotional for the three of us but the start of our open communication.

“Until then we hadn’t been able to say what we wanted to each other, but that night we did, and we have continued ever since.” Brenda joined a local Alzheimer support group. She also began taking medication.

“It stabilised me. My emotions levelled and, instead of having peaks and troughs, I was much more even. Getting the diagnosis was like a door closing. With the medication, a new window opened.”

Friends, neighbours and acquaintances were another matter. When Brenda told people she was in the early stages of Alzheimer’s disease, she was met with patronage, avoidance and denial. “I became annoyed at the way I was being treated. I was being excluded, no longer validated.

“Friends were shocked, some began to pull away. Others would say ‘you look fine, you can’t have that’, or ‘I forget where I put things too’. Forgetfulness is completely different from memory loss. When you forget where you’ve put something, you can retrace your steps and find it. “With memory loss, you can’t do that as you may have no idea of what had happened earlier. But people with early Alzheimer’s can still be very competent. The more independence we are robbed of, the more we lose.

“Ideally people should ask if we want help, rather than assuming we do. Sometimes I’m glad of it, sometimes it’s hard to ask, but a typical response is that people begin doing for you what you can still do very well for yourself – and so you begin to lose more.”

One night she was asked to speak at a local Alzheimer’s meeting and even though she was extremely nervous and spoke only for five minutes, she saw immediately how effective she had been by the way people responded.

“I realised this was one of the gifts that has come my way – I can talk about Alzheimer’s, I’m not embarrassed. I could raise awareness of the disease. This was something I could do.”

Two more gifts came her way when she met Linda Westbrook, grief facilitator, and her singer/songwriter daughter, Sarah. This meeting led to a song One More Memory, cowritten and sung by Sarah, which gives voice to Brenda’s thoughts and feelings.

“I wanted to leave something for my children. The truest line in the song lets my children know that it’s my mind that’s leaving me, not my heart. I will always love them, no matter how it seems in the future,” she says. The trio have since set up a non-for-profit company One More Memory. The CD sales are used to variously support families and carers dealing with Alzheimer’s, and to raise awareness of the disease in Canada and internationally.

They have recently produced a leaflet Memory Work Out for people with early stage memory loss, and are currently writing two more to facilitate mutual understanding and communication between sufferers, family and professionals.

Linda and Sarah sit with Brenda as we meet in a Dublin hotel. They are her carers when away from home. Still cogent and articulate, her short-term memory is affected. She may not know what day it is, has little sense of time. She can no longer travel alone, becomes easily overwhelmed and disorientated by crowds.

She is in Dublin to help launch new research into Alzheimer’s disease in Ireland which revealed that 63 per cent of carers spend 14 hours or more with patients, pointing to the need for much more support.

Back home, her son Dallas, his wife and two-year-old daughter live with Brenda as family and carers. For Brenda herself, it’s not one day, but one moment at a time. “At first I was relieved by the diagnosis, but then I began to realise that my life was forever changed. Today I live for now. I don’t worry about the past and have no regrets. I don’t worry about what will happen tomorrow because I don’t know what will happen. I live for today. “

There have been many blessings. Were it not for this disease, my son would not be living with me and I would not be seeing my granddaughter every day. Every morning I hear her coming up the stairs calling my name. “She is changing all the time, she brings such joy to my life.” For the first time her voice breaks, and Brenda’s eyes fill with tears.

She does not know the future course of her illness. “I get sad, low, of course I do. I look at my granddaughter and realise how I’m going to miss her, and how I will miss my children. I don't know about the future.

“I’ve already blown the statistics out of the water, I’m already in bonus time where every day is a gift,” she says.

Alzheimer's: the facts

- Alzheimer’s disease is a progressive, neurological condition characterised by the build up of proteins in the brain. These gradually damage and eventually destroy the nerve cells making it progressively more difficult to remember, reason and use language.

- There are almost 40,000 people in Ireland with Alzheimer's disease/dementia, and 50,000 involved carers. The disease affects one in 20 over age 60 and one in five over age 85. Estimates suggest that our ageing population and longer life expectancy mean that 104,000 people will be affected here by 2036.

- The Alzheimer Society of Ireland offers a range of services nationally including day-care centres, home and respite care, support groups for carers, clubs for Alzheimer sufferers and their families. Their helpline is 1800 341 341 www.alzheimer.ie