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Tag Archives: Alzheimer’s

AKU play ‘Main Bhool Gaya’ highlights dementia problem

Published: January 31, 2018
Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

KARACHI: Dialogues interspersed with laughter from the audience at Aga Khan University’s packed auditorium on Monday while watching a play on dementia. Watching attentively, there were many moments of silence where audience found itself relating to the pain of having seen a loved one go through the ordeal of dementia.

The play, ‘Main Bhool Gaya’, was created by Patronus Theatrics, which is a production group run by students and faculty of AKU. It was aimed at raising awareness about dementia and the story showcased a family’s struggle in caring for an elderly father suffering from the disease.

Dementia is a disease that mostly affects the elderly, but can also be triggered due to other factors or ailments. It can often go unnoticed by family members and health professionals in Pakistan. Often, the signs of dementia are misconstrued as being ‘a normal part of ageing’.

Patients of dementia forget not just words, but a sense of time and whether they are in the past or in the present. As it is a progressive disease, the patient starts forgetting basic physical functions overtime.

While it is painful for the patient, it is equally difficult for the family and caretakers who often do not understand how to handle the situation. The play portrayed how a family struggled to tackle the issue, particularly the daughter who was most sincere in her service to her aging father.

AKU Department of Family Medicine Associate Professor Dr Saniya R Sabzwari was the executive producer and wrote the script, along with Kumael Azhar and Ibrahim Sajid. At the end of the play, she expressed the importance of spreading awareness about dementia.

“Humourous moments have been added to the play to give the audience a breather,” said Dr Sabzwari, explaining that the topic of dementia can be depressing.

The play was directed by Sunil Shanker with Maeen Abbas as the student director and Kaleem Ahmed as the student producer. The actors received a thunderous applause at the end, particularly Azhar, who acted as Colonel Haidar, a man who began to forget who he is, yet was kept company by a younger version of himself in his world of alternative realities.

Dementia, as the play highlighted, is not just about ageing, but is a disease that needs to be understood, as does the plight of both the patients and the caretakers. Plays like this are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society.

World Alzheimer’s Day: A life without a memory

By Farahnaz Zahidi

Published: September 21, 2014



It is important to remember both the patient and the caregiver of the disease of forgetfulness. STOCK PHOTO
“She started showing the signs as soon as I got married. In my mother’s case, as she was a widow, loneliness was the trigger. Within months, she had full-blown Alzheimer’s disease,” shares Zarqa Qureshi, who lost her mother almost seven years ago.
The most painful thing for Qureshi is the memory of days when her mother could not remember who her daughter was. “At times, she would call me ammi jaan, thinking I was her mother, as I was the person looking after her,” she recalled.

Alzheimer’s disease is a form of dementia that results in loss of short term memory. It is common ailment amongst those above the age of 60. This leaves spouses or children as the primary caregivers in most cases. A majority of caregivers say it is emotionally taxing to see their parents or loved ones rendered helpless, almost as though they are entering a phase of second childhood.
Yet, social empathy remains a challenge regarding the disease which is often mistaken for insanity. “I have heard insensitive questions like kya aap ke waalid pagal ho gaye hain? (Has your father gone mad?). And people say this in front of my father. He has Alzheimer’s disease but he is not deaf!” says Zara*, whose father has been suffering from the illness for the last 11 years.
According to Dr Ajmal Kazmi, Pakistan is actually one of the better places for Alzheimer’s patients, thanks to the social customs of looking after the elderly in the family. Kazmi, a neurophysician and psychiatrist at Karwan-e-Hayat, is an expert in psychiatric treatment for the elderly.
“Family support and care is the best thing for a patient of Alzheimer’s and that is something our families are luckily good at. I have seen children who are willing to give up everything and serve their old parents. However, sometimes the disease reaches such an intense stage that the family does not know how to handle it. At such a stage, it is a good idea to give the caregiver a break and seek professional help or admit the patient to a facility,” says Kazmi.
At an advanced stage, patients of Alzheimer’s do not just forget names and have cognisance issues but forget basic functions like chewing, walking or passing stool and urine. Paranoia is part of the early signs of the disease where the patient starts suspecting even very close people of foul play. “My mother used to keep the tablets in her mouth for hours and would spit them out when no one was looking,” said Qureshi.
While the disease has no treatment as such, its progress can be arrested with medication, explains Dr Samia Zafar, Coordinator at Alzheimer’s Pakistan. Zafar says the disease is linked to factors like the general health and well-being of the patient, and people from lower income groups suffer comparatively more. “By 2050, 70% of all Alzheimer’s patients globally will be from middle-income and lower-income countries,” says Zafar. Factors such as diabetes, hypertension and chronic diseases make it worse, and any turning point or trauma in life can trigger the illness.
Pakistan Society of Neurology president Professor Wasay Shakir says there are not enough neurologists dealing with Alzheimer’s and dementia. “Pakistan has just 180 neurologists. That means one neurologist for every one million Pakistanis,” he said.
While doctors advise that patients be given company, the norm is to keep such patients mostly at home. “People would give me sympathetic stares and ask why I bother to bring my mother to family occasions and outings. Society needs to understand that isolation is not good for them,” said Qureshi.
“A common mistake is that if the patient has more than one child, they all take turns caring for their patient in their own homes. That is not a good idea. The patient should be allowed to stay in their own environment as displacement makes the symptoms worse,” says Kazmi. When asked who in his experience serves patients most, his immediate reply is, “Daughters. It is mostly the daughters.”
Published in The Express Tribune, September 21st, 2014.

My mother’s dementia & what that has meant to me…..In Dawn. Com

My Mother Has Forgotten A Lot, But Not All

Published in
My mom…..well…..what should I say but say that she forgets. And that she is not quite the person she used to be.
It started in her early 50s….maybe earlier……but that is my earliest memory of it.
She would keep her keys and forget where she kept them every day, besides other stuff.

Sometimes when I forget stuff expectedly as a result of juggling too many things in my mind perhaps, my daughter gives me a worried and intense look. She fears for me that I may have inherited the condition from my mother and my grandmother. Me and my siblings all secretly fear it for ourselves, we confess to each other in our “blood meetings” (where we hang out, once every six months at least, sans spouses or anyone else). 
It’s funny how we don’t really fear inheriting my dad’s heart condition or my mother’s arthritis. What we fear most is inheriting her forgetfulness, which basically became full-blown and stared at us in the face after we lost our father and her companion of more than 5 decades. It accelerated at an unbelievable pace after my father left us. It seemed my mother had held back letting her memory slide downhill. She did not recognize life without him I guess. He was her friend, guide, confidante, the love of her life, the pivot of her existence. Two people, almost antonyms of each other, had one of the most beautiful companionships I have witnessed in my life. Once he was gone, she perhaps felt letting go of her memory was the best option……this would leave her in the long-gone past……retrograde amnesia. The present or recent past she was not so interested in.
Does she have simple dementia, as she is now 70 plus? Is it an effect of “mini-strokes” as her geriatric doctor suspects? Or is it Alzheimer’s? And if it is Alzheimer’s, is it SDAT (Senile Dementia – Alzheimer’s Type). I don’t really know the exact answer, because by the time it was discovered, the doctors felt there was hardly anything that could be done about it, and so invasive testing was avoided.
Causes could have been one or more of many. Psychological trauma, inheritance, nutritional deficiencies.  Psychogenic amnesia or psychogenic fugue, if it is that, often occurs due to a traumatic situation that individuals wish to consciously or unconsciously avoid. 
Fancy terms don’t really matter to us. All we know is that it has not been easy. It has not been easy to see my vivacious, extroverted, friendly mother stare at an object for hours. It has been one of the toughest things to see my mother struggling for words that define simple objects……my mother who remembered Urdu and Farsi (Persian) poetry with a passion and would quote the greats often. Whenever I write well, if I do, I know it is because she emphasized so much on my reading habits and writing style. Ammi had the most beautiful handwriting. Today, when for any emergent documentation she has to sign, it takes her 10 minutes for a single signature. She labours over it and I feel helpless seeing that. When my beautiful mother who had an elegant wardrobe and was known for her sense of style cannot recall when she last changed her clothes. When she who organized dinners for and cooked for scores of people forgets whether she has had breakfast an hour back or not. My sister, who lives abroad and comes every few months, shared that she fears that the next time she comes, ammi may not remember her name.
Luckily, the dementia has not been able to take away the most important things. Like the way my mom’s face lights up when she sees her children and grandchildren. Like her insistence on saying her prayers on time, even though she has forgotten the exact Arabic verses. Like her basic nature of always staying thankful and saying “Shukar Allah ka (Thanks to Allah)” whenever someone asks her how she is. Like her sense of humour and her unexpected witty jokes which are always on spot and still make us laugh. Like how she still knows, without my saying, that I am upset or unwell. Like how her inherent calmness and sweetness of nature still remains intact, untouched, unaltered.
We are fortunate that her memory loss has not been very bad. It could’ve been worse. She has good days and bad days. And over time, we have somewhat learnt how to handle it.
But do people remember the important stuff? Or is their forgetfulness more serious than my mother’s dementia?
Have they forgotten that one does not choose to have amnesia or dementia, just like one does not choose to have other illnesses like heart disease or cancer or a hemorrhage? Why is then the acceptability of other illnesses more than neurological or mental illness, may it be Alzheimer’s or Schizophrenia or dementia or chronic depression? Perhaps because these illnesses alter behaviour. And alternate behaviour threatens us because we do not understand it. And when we do not understand something or find it different, we marginalize it.

My mother may have dementia but she remembers and knows enough to know when someone is warm to her and when not. She knows when people talk in front of her about her as if she is not there…..When they just exchange pleasantries with her but do not have the time, patience or inclination to sit with her and make conversation. When their faces have weird reactions when she says something a little off centre simply because her brain has weakened just like someone’s heart or lungs may weaken. 

This is not just true for her. This is generally true for how we treat elderly people. We marginalize them instead of including them in everyday activities and get-togethers. Add to it dementia and people have even lesser understanding unless someone close to them has had it. They also do not know what the caretakers and the family are going through.

The mind is as much a part of our body as is any other… is time we took time to understand the illnesses of the mind. Only understanding can develop empathy.