For Diane Mansour, her mother’s slide into dementia due to Alzheimer’s disease was a slow and agonising one.
She watched the woman who was so accomplished as a wife and mother turn into an old lady who no longer recognised her own face in the mirror.
“It starts with little changes that all families will notice,” she says. “There is usually one or two years of anxiety building up as you notice the little changes.
“You don’t want to face it. The anxiety was there, but you don’t want to know it. You want to postpone that story until it becomes too obvious.”
Mansour’s story is by no means unique. Her mother, Virginia, who died three years ago, is one of an estimated 7.7 million new cases of dementia diagnosed worldwide each year – an average of one every four seconds.
But, despite the high prevalence, awareness of the illness and funding for the prevention, management and cure has remained relatively low in comparison to the money spent on other diseases such as cancer or heart disease.
When her mother was told she had the disease in 2001, Mansour had barely heard of Alzheimer’s, let alone knew the best way to take care of someone affected by it.
“I was a happy, easy-going person who was devastated by the news and I thought I couldn’t cope; I had zero references, I didn’t know what to do. I thought I really couldn’t manage. I spent my time going from one psychiatrist to another. I was always crying and weeping.
“I really tried to escape that responsibility as much as possible, because I didn’t know what I was doing.”
For many families, receiving an official diagnosis follows months or years of difficulties. In high-income countries, only 20 to 50 per cent of patients receive a diagnosis in primary care. In poor countries, up to 90 per cent of those afflicted are never diagnosed.
Often, symptoms of the disease are put down to old age. But for Mansour, she remembers the moment when she was forced to acknowledge that her mother was not just getting old.
“She was on her way to see my brother in the Dominican Republic on a stopover in a hotel in Paris. That night in the hotel, I called her from Lebanon and she was completely lost. She didn’t know what she was doing.
“I asked about her plane ticket, she said, ‘What ticket?’.” When Mansour consulted her family doctor about the conversation, he put her mother’s behaviour down to a sort of panic attack. But combined with other unusual behaviours, she knew this was not the case.
“She would repeat her sentences. Then she started accusing people of stealing from her. She would hide her money and other precious things so well that she couldn’t find them. And she would accuse the maid of stealing.
“She also really had the household in hand; the cooking, the cleaning. Then she couldn’t cook anymore.”
Prior to the official diagnosis, Mansour had consulted doctors about her mother’s behaviour, but was never given any information relating to dementia or Alzheimer’s.
“One day, her maid called me to say my mother had woken up at home and said she wanted to go home, she was packing all her clothes.
“I called the doctor, he gave me a very strong tranquilliser to shut her up. So you do that the first time, and people come round and say ‘Oh, what a pity’ and ‘Oh, what a shame’. As a caregiver, you feel ashamed, you feel embarrassed. And you have a horrible grief that consumes you. You don’t know where to go.
“Two weeks later, she wants to go home again and the doctor gives us a double-strong dose of the medicine. Today, I know the only thing she needed was security. She just needed someone to hold her hand and make her feel safe.”
Her mother then spent two years living with her son in the Dominican Republic, but her condition deteriorated to a point where Mansour’s brother and sister-in-law were not comfortable having her around their young child. The journey to collect her mother and bring her back to Lebanon turned out to be life-changing.
“While I was there, there happened to be a local meeting of an Alzheimer’s association. I went with a very negative mentality, but it changed my life. For the first time, I heard the words ‘They feel insecure and they don’t do anything on purpose’.
“We went back to Lebanon. I hugged her and told her ‘I’m going to protect you from everything and I’m going to take care of you’.”
From that point, Mansour has dedicated herself to raising awareness of Alzheimer’s disease in the Middle East in the hope that those affected, and their families, will receive better care.
She is now the Middle East and North Africa (Mena) envoy for Alzheimer’s Disease International (ADI), a federation of Alzheimer’s associations around the world that works closely with the World Health Organization.
In December, she organised a Mena regional conference of the ADI, attracting experts from the region and beyond.
“It was a dream come true, speaking to others about their personal experiences and how they wanted to change their society.”
In recent years, Alzheimer’s disease has emerged from the shadow of other curable diseases such as cancer to be debated on a global platform. In 2008, the WHO identified dementia as a priority condition in its Mental Health Gap Action Programme and last year, the WHO and ADI released a 102-page report, Dementia: A Public Health Priority, to “encourage country preparedness” and “improve social well-being and quality of life of those living with dementia and their caregivers”.
There is plenty of evidence to show that Alzheimer’s is a growing problem worldwide. The 2013 World Alzheimer Report states that the number of people with the disease is expected to double by 2030 to more than 70 million, and hit 115 million by 2050. But the figures do not tell the whole story.
“Over the past decade, professional and media publications about Alzheimer’s have increased exponentially, and some highlight an entrenched problem not evident in simple tallies about the burgeoning numbers of elderly,” writes the medical anthropologist Margaret Lock in her new book The Alzheimer Conundrum, Entanglements of Dementia and Aging.
“If the burden that increasing numbers of demented elderly place on society, families and individual caregivers is to be engaged with constructively, then the ignorance, fear, stigma, shame, discrimination, denial and indifference commonly associated with dementia must first be exposed and overcome.”
Since it was first defined in the early 20th century, billions of dollars have been spent trying to pinpoint the cause of Alzheimer’s disease and to find a cure.
Lock, the Marjorie Bronfman Professor Emerita in the Department of Social Studies of Medicine and the Department of Anthropology at McGill University in Montreal, Canada, argues that it is time for the world to take a different approach to Alzheimer’s, one that focuses much more on those who do not develop the disease. This would help to better educate people about the possible ways to stave off the illness, rather than simply accepting it as a routine part of growing old, she argues.
In her book, Lock examines much of the scientific research that has been done over the years and the impact that these efforts have actually made towards the prevention, management and cure of the disease. She also draws on hundreds of interviews with clinicians, patients and their families.
To date, there is no vaccine or cure for the disease, and, Lock argues, even if there were, the cost and vast differences in the quality of health care across the world would mean the majority of Alzheimer’s patients would not receive treatment. The WHO report states that while Asia has the highest numbers of people with dementia (15.94 million in 2010) because of its population size, Africa will see the biggest proportionate increase (370 per cent) between 2010 and 2050 because of its aging population.
“The long-standing goal of pinning down the Alzheimer’s phenomenon, usually by subdividing and fragmenting what is subjected to scrutiny to make it manageable, is a moving target, and so far it has been doggedly resistant to all efforts to neatly define and treat it,” says the professor. “At present, the shift to prevention is bringing a renewed excitement to the field, although a moment’s reflection makes clear, given the decreasing resources allotted to health care in most parts of the world at a time when elderly populations are everywhere increasing, that an AD [Alzheimer’s Disease] epidemic is unlikely to be resolved in the near future.”
There are very few sources of Alzheimer’s statistics in the Middle East. None of the health authorities in the UAE, for example, release public figures on the numbers of people with dementia or Alzheimer’s and there are no Alzheimer’s associations or advocacy groups collecting data. The WHO dementia report says the Middle East and North Africa will see a 125 per cent increase in cases by 2050 and estimates that almost 6 per cent of those over 60 suffer from it.
However, a pilot study in Dubai revealed last year that the prevalence here was closer to 14 per cent, says Dr Mohammed Gamil Elnoamani, a senior geriatrician and head of medical affairs at Dubai’s Family Gathering Centre, which runs a monthly support group for caregivers of Alzheimer’s and dementia patients. A more worrying finding was that only about 12 per cent of people with the disease are receiving treatment.
“There are only about 750 cases receiving treatment,” he says. “We need more awareness. A lot of people are not even aware of Alzheimer’s, they think it’s just memory problems relating to age.
“There are efforts to increase awareness, and we are trying, but there definitely needs to be more.”
With the UAE’s relatively young population, it makes sense that the country will see a spike in age-related illnesses in 40 or 50 years time. The over-60s represent just 4 per cent of the local population in the UAE, but in another 40 years, it will be closer to 20 per cent, according to the Ministry of Health.
For Lock, now is the time for countries to focus on Alzheimer’s as a public health problem, rather than something that can be diagnosed, treated and cured by spending millions on scientific neurological research.
“The funding has been used to develop drugs to “cure” AD,” she says in an email interview with The Review. “Despite millions of dollars being spent so far, virtually nothing effective has been discovered. However, a great deal has been learnt at the molecular level about changes that take place in the aging brain as a result of this research. But, even so, there is no good explanation as to why many people become demented in old age, whereas many more remain unaffected.
“Alzheimer’s has been underfunded compared to heart disease and cancer. It is important that a great deal more money is set aside by governments for research in connection with AD. I believe that an approach to AD that continues to try to elucidate the molecular basis of changes in the brain associated with dementia is very important, but I also believe that a great deal more money must be directed to a public-health approach.”
In recent years, other countries have begun to sit up and take notice of this disease. Last year, US president Barack Obama pledged an additional US$100 million (Dh367.3 billion) to Alzheimer’s research, education, awareness and outreach. At the G8 Summit in London in December, David Cameron, the UK prime minister, pledged to increase funding from £52m (Dh312.2m) in 2012 to 2013, to £66m by 2015 and to make available on the country’s public health service a scan to rule out Alzheimer’s disease. Meanwhile, the US government pledged an additional $80m to Alzheimer’s research, bringing the 2014 total to $415.2m. The money is aimed at “speeding drug development and testing new therapies for Alzheimer’s disease”, not on public health awareness, or preventive research. By comparison, the country’s National Cancer Institute says funding over the past six years has remained relatively flat at approximately $4.9bn.
In the Middle East, there is an additional public health concern, one affecting caregivers. The World Alzheimer Report 2013 sent a very clear message about the future of Alzheimer’s: “The traditional system of ‘informal’ care by family, friends, and community will require much greater support.” This is particularly pertinent in this part of the world where residential care homes are few and far between, and the onus on caring for the elderly falls to the family.
In the UAE, there are only three nursing homes, one in Dubai, one in Ajman and one in Sharjah. Only those with no immediate family and no psychological illnesses are allowed to live in them.
Last summer, the Dubai Health Authority launched a monthly Friends of Alzheimer’s support group. It is the only government-sponsored Alzheimer’s support group in the country. Dr Salwa Al Suwaidi, director of Dubai’s Family Gathering Centre, is one of those in charge of the group. She is one of only a few specialists in geriatrics practising in the UAE and, as an Emirati, she understands some of the issues that exist.
“There is [a] stigma against it from the relatives who feel a little bit shy that they have a patient with Alzheimer’s or dementia. “The main aim of having our support group is to tackle the caregivers, to give them all the information they need to handle the patient.”
The meetings on the first Thursday of every month at the Family Gathering Centre in Al Mamzar draw 35 to 50 people, and the numbers are growing. There is also a telephone helpline which runs 24 hours a day – 056 371 0077.
“We noticed when we launched, we got a lot of expatriates coming. But in the last, maybe two meetings, we start to see the locals coming. That was really encouraging.
“We want to teach the caregiver how to take care of the patient and handle his or her behaviour. These patients feel insecure, they just need love and somebody to hug them. They are totally in a different world, they shouldn’t be blamed for their behaviour.”
A lack of awareness about the complexity of Alzheimer’s and dementia among caregivers can leave a person at risk of neglect or even abuse, Dr Salwa says.
“The abuse is there, again we don’t have statistics or figures. It comes as verbal and psychological, not just physical or neglect. For example, we have seen patients who have poor blood sugar because they have not been given their medication because they didn’t want to take and they fought.
“This behaviour can be difficult to handle, so they leave the decision about medication to the patient, as if he or she has the ability to decide for himself.” The centre is the only one of its kind in Dubai to offer respite care to caregivers. At the December conference in Dubai, Mansour spoke about what she calls caregiver’s dementia. Not a biological dementia, but the sometimes overpowering symptoms of fatigue that can affect someone caring for a person with Alzheimer’s.
“The real reality is you need to take care of yourself to be able to deal with it. It can be horrible. The caregiver might not be sleeping properly, they are feeling very guilty. If your father gets cancer, you feel sorry, but you don’t feel guilty.”
A lack of accurate statistics on the prevalence of the disease could be partly to blame for the lack of organised support or help groups.
“Even if you try to do statistics, it may not be real, because most likely there will be patients who haven’t seen a doctor and who died from the disease but were never diagnosed,” says Dr Khaldoun Mohazem, a neurological consultant at the American Centre for Psychiatry and Neurology in Abu Dhabi.
“With awareness, we see it’s getting better and better, but still the level is not good. People assume that this patient has memory issues and it’s just an age issue.”
In the seven years Dr Mohazem, who trained in the United States, has practised in the UAE, awareness has grown, albeit minimally.
“I do see more people over the last few years talking about it, and a few activities to raise awareness, but it’s not on a wide range, not like something like breast cancer.
“For sure it does help to make people aware of Alzheimer’s, so we don’t keep the elderly alone left and not treated.”
Writing to The Review about the Middle East, Lock says that education to remove all stigma is the most important task for countries such as the UAE that expect the number of older people to rise significantly.
“This is a biological matter associated with aging – no stigma or discrimination should be associated with it,” Lock says. “Second, education to teach people that how they live their lives when younger will have an effect on their brains when they are old – smoking is not good, junk food is not good, sedentary lifestyles are not good.”
Mitya Underwood is a senior features writer at The National.