The cruellest loss

Health Carers for people with Alzheimer's disease face a struggle that can affect their physical and mental health.

30 Nov 2007, New York City, New York, USA --- Dr. Ana Blohm of the of the Mount Sinai Visiting Doctors Program in New York City holds the hand of Arthur Marcus, 94, a patient for three years who has never left his apartment during that time. Arthur suffers from severe depression that leaves him without motivation. The Visiting Doctors Program of Mount Sinai Hospital serves over 1000 patients who have difficulty leaving their homes. A model program that bucks the current trends in health care, Dr. Blohm and her colleagues provide hands-on, high-quality medical care to men and women in their own homes. The patients include frail older adults, patients with dementia, psychiatric illness, neuromuscular disease, cancer or diabetes, and those who are terminally ill. --- Image by © Ed Kashi/Corbis
Powered by automated translation

It is a scenario played out in millions of families. A 75-year-old grandmother, in good physical health, has problems finding the right words. Sometimes she barely utters a sentence; at other times she is fluent. She hasn't had a stroke but starts showing signs of confusion. Her family thinks she is just depressed. What could be wrong? There is no specific test for Alzheimer's, but experts say the grandmother is showing signs of aphasia, a speech and language disorder. And the major causes of aphasia in older people include stroke and degenerative brain diseases such as Alzheimer's disease.

Alzheimer's - a word that strikes fear into the human psyche - is the most common cause of dementia, affecting one in 14 people over 65 and one in six over the age of 80. First described by the German neurologist Alois Alzheimer, it is a disease in which "plaques" and "tangles" develop in the brain, leading to the death of brain cells. A proper diagnosis involves a blood test and a physical examination to rule out other medical problems. A person's memory and thinking skills may be assessed in detail by a psychologist and a brain scan carried out to give some clues about the changes taking place there. But so far, no one single factor has been identified as the cause of Alzheimer's.

Experts say it is likely that a combination of factors, including age, genetic inheritance, environmental factors, diet and overall general health, are responsible. A spokesman for the Alzheimer's Society in the UK said: "Many people fear that they may inherit Alzheimer's disease, and scientists are investigating the genetic background to Alzheimer's."We do know that there are a few families where there is a very clear inheritance of the disease from one generation to the next. This is often in families where the disease appears relatively early in life. But in the vast majority of cases, the effect of inheritance seems to be small. If a parent or other relative has Alzheimer's disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer's in the immediate family."

That is some comfort then, but as the Society is the first to acknowledge, it is of little practical help to those who day in, day out are caring for an elderly spouse, relative or friend in the grips of the disease. As dementia develops, it can cause behavioural changes that can be hugely difficult for others to deal with. For example, people with dementia often carry out the same activity, make the same gesture, or ask the same question repeatedly. It is not unusual for a person with dementia to go through the motions of the activity they may previously have carried out at work.

Carol Thatcher, the daughter of the former British prime minister Margaret Thatcher, 82, recently described her mother's own distressing dementia (which was not specifically identified as Alzheimer's but bore some of the hallmarks of it. There are over 100 types of dementia). In A Swim-On Part in the Goldfish Bowl: A Memoir, Carol said her mother - once known as one of the world's most formidable political minds - had been suffering for seven years. Carol said that losing her father, Sir Denis, to pancreatic cancer in 2003 "was truly awful" for her mother, "not least because her dementia meant she kept forgetting he was dead. I had to keep giving her the bad news over and over again," she told the Mail on Sunday newspaper last month.

"Every time it finally sank in that she had lost her husband of more than 50 years, she'd look at me sadly and say 'Oh', as I struggled to compose myself." On bad days her mother can "hardly remember the beginning of a sentence by the time she got to the end", she says. Lady Thatcher's political ally, Ronald Reagan, was afflicted by Alzheimer's. In November 1994, he wrote one of the most touching farewell letters in American history when he told the world he was dying from the disease.

"I now begin the journey that will lead me into the sunset of my life," he wrote. "When the Lord calls me home, whenever that may be, I will leave with the greatest love for this country of ours and eternal optimism for its future." The announcement was no surprise to friends and colleagues, who had seen his powers decline for several years, and it seems likely he suffered mild symptoms while still at the White House. Some of his much publicised and ridiculed lapses of memory may have been early signs of the disease.

But his letter paved the way for others to disclose that they too had Alzheimer's, including the British novelist Iris Murdoch and the American actor Charlton Heston, and it triggered an outpouring of support for human embryonic stem cell research. Stem cells are cells in the body that can develop into any of the different cell types needed to make a human being. The Alzheimer's Society in the UK says the ability of stem cells to turn into any cell type that the body needs means that they have "major potential" to treat diseases where tissue has been damaged. "This is an exciting and promising area for medicine. Stem cells can also grow into nerve cells and have the potential to repair brain damage caused by neurological conditions," said a spokesman.

Dr Abdul Razak Abyad, the CEO of a geriatric hospital in Lebanon, the director of Abyad Medical Centre and the chairman of the Middle East Academy for Medicine of Ageing, says there is some cause for optimism regarding scientific research, and it is important to realise that Alzheimer's is "not a normal part of ageing". Abyad, who is also the editor of the Middle East Journal of Age and Ageing, said that just as in other parts of the world, Alzheimer's is a major health issue in the UAE.

"In the Middle East the population is ageing gradually and the percentage of elderly people will double in the next 10 years. There are no clear estimates of how many people suffer from Alzheimer's disease, although we believe the prevalence is similar to other developed countries. No treatment can stop Alzheimer's disease. However, for some people in the early and middle stages of the disease, the drugs tacrine (Cognex, which is still available but no longer actively marketed by the manufacturer), donepezil (Aricept), rivastigmine (Exelon), or galantamine (Razadyne, previously known as Reminyl) may help prevent some symptoms from becoming worse for a limited time. Another drug, memantine (Namenda), has been approved to treat moderate to severe AD, although it also is limited in its effects."

He said new areas of research, such as certain types of brain scanning, could help speed up clinical trials by determining the effectiveness of treatments. There is also research into the role vitamins such as vitamin E could play. "Scientists have made great progress in defining the changes that take place when someone suffers from Alzheimer's disease which allows them to pinpoint possible targets for treatment," he said.

But in the UAE, Alzheimer's does not get the attention it deserves, he added. "Not a lot of people are aware of the disease. There is also a lack of knowledge among health care teams owing to a lack of training in the field. In addition, in the Gulf region, there is lack of geriatricians (physicians specialising in elderly care) and geriatric teams within hospital and health centres both at the governmental and private level. There is a need to raise awareness about the disease among the public."

Most often, spouses and other family members provide the day-to-day care for people with Alzheimer's. As the disease gets worse, people often need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job, and finances. "So there are not enough support groups, services, and research centres getting involved in studies and publications about Alzheimer's in the region."

Meanwhile, the best-selling fantasy author Terry Pratchett, 59, recently donated $1 million (Dh3.7 million) for research into Alzheimer's disease. The creator of the Discworld series was diagnosed with a rare early-onset form of the disease in December. Telling leading dementia specialists of his determination to find a cure, he said: "I intend to scream and harangue while there is time."