Ahead of World Alzheimer’s Day tomorrow September 21, Bejay Browne discovers just how devastating the disease can be )
GEORGE Norland had his dreams of a quiet retirement in Paphos shattered when he was diagnosed with Alzheimer’s a little over a year ago.
“I realised I couldn’t remember things as I ought to, and as a family member had died of Alzheimer’s, I recognised some of the signs in myself,” he said. “It was hard to cope with and even now after a year, it’s sometimes too much to bear.”
George (not his real name) is among the estimated 10,000 people in Cyprus suffering from this progressive and fatal brain disease for which there is still no cure, although drugs are available to slow down its progress.
George knows what is in store for him and keeps a daily diary, which include facts about his life and family history before it all becomes too late.
“It’s for my children and grandchildren,” he said. “I don’t want everything to be lost, and I realise in the future I will no longer be able to understand or communicate.”
Although keeping a diary helps him cope, he admits the future terrifies him. “Yet, my diagnosis has also made me realise how precious every moment of life is. My aim is to enjoy my life each day and to try not to think about what I will become.”
Alzheimer’s sufferers in Cyprus receive support from the Pancyprian Alzheimer’s Association that was set up in 1996 and is run as a non-profit organisation. Two women from Larnaca, who both had family members or friends with the condition, started it up.
President of the association is Noni Diakou. “I became involved because my mother and her two brothers both had Alzheimer’s. I think for many of people involved in the organisation, there has been a personal crisis, or some type of connection.”
There are currently branches of the association in all major towns, and a second day centre in Nicosia district, which provides care for sufferers, is due to be inaugurated today.
Chrystalla Themistocleous, the president of the Paphos branch, also has a family connection with the disease which led to her own involvement with the charity.
“I was listening to the radio one day and I heard a doctor speaking about the first symptoms of Alzheimer’s; it rang a bell with me. It explained all of my mother’s peculiar behaviour.”
Chrystalla, who is also a supervising nurse at Paphos general hospital, explained that her mother was having problems with memory loss.
“At that time doctors in Cyprus didn’t really seem to know about the disease. I had taken my mum all over the place, but no one here could diagnose her at that time.”
She set up the Paphos branch of the association in 2002.
“We have helped many patients in Paphos, both British expats and Cypriots. We provide nursing care for seven people at present, whose condition is serious and help many others. Our assistant nurse goes into people’s homes to help the families as well as the patient.”
The disease progresses to such an extent that the patient cannot walk and becomes bed ridden. “We give bed baths, and also can provide other help in the household as well as nursing care,” she said.
It was a service that Miriam Stock had to use for her husband William who died of Alzheimer’s a couple of years ago.
The couple had retired to Cyprus nine years ago and had always enjoyed good health and led active lives in the UK.
“It was our dream to come and live here, as we had fallen in love with the island in the 1970s, when we first visited,” said Miriam (not her real name).
“My husband, William had been a wonderful husband and father and we had a very good marriage. I noticed he began to be forgetful, and the children who often visited from abroad would tease him about it.”
But as his short-term memory become worse Miriam began to think something must be seriously wrong.
“He went to see a doctor and we were devastated to find out that he had Alzheimer’s. We cried ourselves to sleep that night, and telling the children was very difficult,” she said.
“William did his best to be strong for us, but I can’t imagine the terrible thoughts, which must have run through his head, knowing that he was disappearing. Although he was given some tablets, which are supposed to slow progress of the disease down, there isn’t a cure.”
For Miriam perhaps her worst day was when her devastated daughter confided that her father had asked her help for him end his life.
“William wasn’t this kind of man, and I think the idea of the disease tortured him. My daughter was very upset.”
Miriam believes the situation eases for the patient once they are no longer consciously aware of their state, although for the family this is the worst time.
“I looked after my husband and I know he would’ve done the same for me. He died a couple of years ago and I miss him every day.
“After he died I only had memories of what he had become, but now, with time, I’m able to remember the strong loving kind man he was.
“Alzheimer’s is a terrible disease, and more money needs to be invested into finding treatment and perhaps a cure.”
Alzheimer’s disease is named after a German doctor Alois Alzheimer, who recognised the brain disease in 1906.
As the disease progresses brain cells are destroyed and this affects memory, the thought process and behaviour. As the disease worsens the patient becomes unaware of who they are and no longer recognise others.
Alzheimer’s is the most common form of dementia, which is a more general term encompassing memory loss and ability.
As we age, it appears as if our brains change also. More than 100 billion neurons in the brain form a communication network, which help us with a variety of processes. These include thinking, remembering, senses and muscle movement. All dementia sufferers including those with Alzheimer’s experience an increasing number of brain cells deteriorating and then dying.
There are three recognised stages of Alzheimer’s, although it may affect individuals in a different ways.
The first is memory loss; in particular problems will be encountered with remembering new facts.
If a doctor is able to test a patient at this stage, they will undergo assessments and cognitive tests and then perhaps a brain scan.
The next stage will see the patient becoming more confused and irritable, and they may experience mood swings. As the senses become more affected they may become withdrawn.
The final stages involve the loss of bodily functions, and this then results in death. On average patients live for about seven years after being diagnosed, although some live with the disease for years before it’s diagnosed.
Causes and the progression of the disease are not fully understood, and trials and research into Alzheimer’s is an ongoing matter. The WHO report that as of 2008, more than 500 clinical trials investigating possible treatments for the disease were undertaken, but it’s not yet known if the outcomes were successful.
Mental stimulation, exercise, and a balanced diet are often recommended, as both a possible prevention and a sensible way of managing the disease.
For further information contact the Pancyprian Alzheimer’s association 24 627104
