“Alzheimer's took my grandmother away, but never changed her beautiful image in our mind”

“This old lady who sits here looks like my grandmother, but she is not; it’s as if another soul has inhabited her body. My grandmother who raised me, has a strong personality, is cheerful, and knows everything about us. But this lady looks sad and exhausted. She doesn’t even remember her grandchildren.”

Dunia El Kheshen spoke about her grandmother and her fight with Alzheimer’s, which hit her recently.

“Two years ago, when my grandmother started telling us the same old story from her past – about how she built this big house with my grandfather – she would repeat herself, once, twice, three or more times, but she would stop specifically twenty years ago. Nothing after that. It was as if nothing ever existed then,” says El Kheshen.

It was then that El Kheshen and her family recognized that her grandmother was unwell, which eventually lead them in discovering the onset of Alzheimer’s.

“Dementia is a complex and progressive neurodegenerative condition that impacts the life of patients and their loved ones. Alzheimer’s disease and vascular dementia are the most common forms of dementia,” says Dr. Salman Al Jerdi, Assistant Professor of Neurology at Weill Cornell Medicine – Qatar, a Qatar Foundation partner university.

Patients only lose the ability to communicate effectively with their family members or start to forget their children in cases of advanced dementia, according to Dr. Al Jerdi. The fact that this is a slow-developing process allows time for caregivers to develop coping mechanisms that will help them handle major stressors facing them.


The symptoms

At the start, El Kheshen’s grandmother did not forget her children, but she forgot her grandchildren and relatives. “She’s always asking me about the identity of my children; and when I tell her that they are my children, she gets angry and asks me when did I ever get married, and why did I have children without telling her,” El Kheshen says.

El Kheshen’s grandmother’s symptoms began to worsen, and she started to lose more control of things that were happening to her and around her.

“She would eat, but after a while she would forget that she ate, so she would eat again. Her feelings changed quickly – she laughed, cried, got angry, and then calmed down within a short span of time,” El Kheshen says.

In the later stages, she lost her sense of smell and taste, and her health began to decline. She would do things that make El Kheshen and her family very worried. El Kheshen says once her grandmother left home alone in search of her daughter who was sleeping right next to her in bed.

“My grandmother's condition made my mother very upset. She would look at her and cry. She missed her mother terribly. It was as if she was no longer among us… as if we had lost her forever.”


No cure

In terms of providing her care, El Kheshen’s aunts were living with her grandmother during her illness. But determining the right treatment for her led to emotional strain among everyone. This was exacerbated with the grandmother refusing to take any medications. Everyone in the family knew that this disease has no cure.

Dr. Al Jerdi says: “Current treatments for Alzheimer’s disease have played a relatively limited role in the management of the condition. Medications available on the market currently help slow down the progression of the illness, without stopping or reversing disease course.

“The reasons behind this are complex, with some having to do with an incomplete yet ever-improving understanding of the illness, in addition to some lack of investment in newer treatments.

"The absence of a cure increases the challenges faced by caregivers of patients, which may lead to signs of severe stress, depression or fatigue. To provide support and mental health services to caregivers, these signs must be recognized before they significantly progress.”


Social stigma

El Kheshen’s family did not try to hide the fact that her grandmother had the disease, given that this disease could affect anyone in the community. There was nothing to be ashamed of.

Dr. Al Jerdi says: “On several occasions, family members may choose to hide this diagnosis due to fear of judgement by society. In extreme cases, stigma associated with dementia can result in other families refusing to marry members of the patient’s family. In other cases, delay in discussing the patient’s symptoms may result in delayed diagnosis and initiation of treatment, thus greatly impacting the health and safety of the patient.”

Dealing with COVID-19

When COVID-19 pandemic spread, El Kheshen’s grandmother had no inkling about it. Sadly, she would wonder why her children would avoid approaching her, when, they only wanted to protect her.

Dr. Al Jerdi highlights that patients with dementia are at high risk given their age, associated history of chronic illness, and their vulnerability to infection. He noted that many health organizations have attempted to protect these patients by implementing stricter physical distancing, infection control measures, and limiting family visits.

El Kheshen’s grandmother passed away a few months after the spread of the virus, but she never knew why her family were afraid to go near her.

El Kheshen recalls the few days after her grandmother’s death – after her frail body was unable to resist her existing disease. “When I visited her home for the first time after her death, I took away her favorite red dress to keep. I will wear it when I became a grandmother.

“Alzheimer's took my grandmother from us, but it will not erase the image of the lady who was always with us – a vibrant, beautiful and wise woman. That is how she was, and this is how we will always remember her.”