Around the time Mumtaz Bibi’s father turned 80 he started behaving strangely. Quite often he would drive off to run errands and return home in a taxi. He had clean forgotten where he had parked his car. As the frequency of such episodes kept rising, so did the fights he began having with family members. On many occasions he would walk out of the house for no apparent reason, wander around the street aimlessly and get extremely belligerent when asked to come back home. Today they keep their gate firmly locked, at all times.
Bibi’s father was eventually diagnosed with Alzheimer’s disease, one of the most common forms of dementia.
“Alzheimer’s starts with recent memory disturbances and personality changes that could be received by the family as normal ageing and could be tolerated at this time,” explains Dr Mohammad Gamil Elnoamani, senior specialist geriatrician and head of medical affairs at the Community Centre for Elderly. “However within two to three years things become worse and the patient starts to confuse time and place. They can use the kitchen as if it is a toilet, neglect self-grooming, aimlessly wander for hours and become paranoid, suspecting all members of the family of trying to harm them or kill them. They can also start to hallucinate, to visualise non-existing things that frighten them. Slowly they become dependent in all aspects of daily living.”
Alzheimer’s is caused by a slow deterioration of brain cells — what leads to this is still not known. Despite advances in medical science, there is no known cure or available treatment that can help reverse the progress of this disease, which often goes undiagnosed for long periods.
Since Alzheimer’s most often occurs in people over 65, age is seen as the strongest risk factor. In fact early symptoms are often mistaken to be age-related concerns. Dr Heike Jacobs, senior consultant for neurology at the German Neuroscience Centre, advises geriatric patients experiencing memory lapses to consult a doctor to rule out Alzheimer’s. Since available medication can help slow down the speed of progression and early diagnosis helps prepare patients and caregivers to plan the future. Alzheimer’s patients will start relying on family members for assistance almost round the clock.
Seeing a loved one deteriorate is emotionally overwhelming, but the pressure of looking after them becomes equally draining for caregivers. “The psychological impact of Alzheimer’s is huge on caregivers,” says Jacobs. “They report financial strain, little time for themselves, family conflicts and high levels of emotional stress. At the same time they are grieving the slow loss of a partner, parent or close friend,” says Jacobs.
The last few years have been emotionally and financially tough for both Mumtaz and her mother. During our telephone interview she breaks down several times and explains how leaving her father alone even for a few minutes can prove fatal for him. “He can even eat tissue paper if one of us is not there. Such patients will not ask for what they want. That’s why we always keep food and water near him. Though these patients need more care than a child, we must treat them like normal people. We must make time to listen to them and understand what it is that they need,” she advises.
To provide respite and support to caregivers, Dubai Health Authority has launched an Alzheimer’s support group for family members and patients, along with a 24-hour helpline at the Community Centre for the Elderly. “We have day-care programmes for them, cognitive and occupational therapy, snoozelen therapy, medical advice and prescription, and caregivers’ training courses in addition to a helpline. We may also admit them for short durations to relieve the family temporarily,” says Elnoamani.
Since caregivers are the cornerstone in management, day-care facilities provide them with a much-needed break. They are also immensely beneficial for the patient as it gives them a chance to socialise, receive physical and occupational rehabilitation and take part in activities created specifically to stimulate their mind.
For Mumtaz’s family, the centre has been a blessing. Regular visits in the last two and a half years have led to a vast improvement in her father’s condition, which is far for more manageable than it was five years back. “It’s thanks to them that we get help with medicine and treatment. Whatever my father needs I am getting from the government, all free. Ever since he has been receiving treatment he is so much better, Alhamdulillah,” says Mumtaz.
Dubai Health Authority’s Community Centre for the Elderly: Offers a 24/7 helpline to provide reliable information about the disease. The Alzheimer’s support group meetings are held on the first Thursday of every month for family members, caregivers and patients. Call 056-3710077 or 04-5022807.
Mumtaz Bibi is willing to give caregivers residing in Dubai a break for a couple of hours, pro bono, as she understands first-hand what they are experiencing. Call 050-5583350.
4get-me-not: A non-profit organisation that’s working to raise awareness about Alzheimer’s disease within the UAE, holds support group meetings once a month and organises community events. For more log on to 4get-me-not.org or email firstname.lastname@example.org
The German Neuroscience Centre: Provides diagnosis and treatment of dementia, including electrophysiological tests as well as prescription drugs. For more information call 04 -4298578 or visit www.gncdubai.com
• Common symptoms of Alzheimer’s include forgetfulness, isolation, irritability, suspiciousness and loneliness.
• The disease is different for each individual, so predicting how it will affect a particular patient is difficult.
• When Alzheimer’s is suspected, the diagnosis is usually confirmed with tests that evaluate behaviour and thinking abilities, often followed by a brain scan.
— Shahana Raza is a UAE-based freelance writer