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Dementia: A caregiver’s testimony

“Once in way, I would love to be able to sleep for a few hours at a stretch – undisturbed, and get an occasional weekend off.” Good, sound sleep and a regular day off – something most of us take for granted – are luxuries for Malak Zabarah, and it’s been this way for years!

Malak’s world was turned upside down about 14 years ago, when her father, an ambassador for Yemen, was diagnosed with dementia and she had to take on the role of caregiver along with her mother. Sadly however, things took a turn for the worse when the responsibilities slowly slipped completely on to her shoulder, as her mother too was diagnosed with dementia a few years ago; Malak – an American of Yemeni origin living in Qatar, is now the primary caregiver to both her parents.

Caring for a loved one with dementia presents unique challenges. Through the long years after the identification of the condition, the role of the caregivers does not diminish – the needs of the affected person increases as the condition progresses. Primary caregivers often sacrifice their dreams, ambitions and even career, besides experiencing almost no opportunities to have a social life, or a life to call their own.

Malak’s experiences have been so compelling and so typical of caregivers of people with dementia, that it has earned her a position as a member of the National Dementia Stakeholder Committee. Commenting on this important inclusion, Egbert Schillings, CEO World Innovation Summit for Health, an initiative of Qatar Foundation says, “What it means to be an advocate in health, I have learned from observing Malak. She does so with passion and clarity of purpose. I can only applaud the wisdom of including her voice in the National Dementia Stakeholder discussions.”

Sharing with Gulf Times the experiences and challenges of a caregiver Malak describes, “I am the youngest of four children. Life as I knew it was happy and trouble-free until 14 years ago, when one dreadful afternoon my father woke up from a nap and could not recognise his own bedroom till he saw the old chandelier on the ceiling. Those were the first symptoms as we know it. The diagnosis of Alzheimer’s disease (the most common form of dementia), came as a complete shock to the entire family, especially since our mother had just lost a sister to the same illness.”

The family had a pretty good idea of the challenges that lay on the road ahead. The following months and years were filled with uphill challenges.

“There was no one to take care of my father and the matters of the home besides my mother and me; we couldn’t afford to hire a nurse, and it didn’t feel right in my heart to leave my father with anybody else. My father had been a great dad, always being there for us and taking care of us, and as his daughter I wanted to be there for him.

“My father eventually lost his ability to do even simple tasks like driving his car and we lived in fear that he wouldn’t be able to make it back home, if he went out alone. He fought his condition bravely but ultimately had to give in to the illness. As the memory loss progressed, he became concerned about his condition, until he finally decided to fully entrust my mother with the finances, and the various aspects of the family – basically with life as a whole.

“As years went by, the illness began to present other symptoms and we were confronted with new challenges, adding to the pressure and stress my mother faced. Besides staying awake at night and repeating the same questions over and over again, he began forgetting where he was and worse still, came to the point where he could not recognise my mother or me. Today he is completely dependent and cannot be left alone at all.”

The progressive deterioration of Malak’s father’s condition naturally had quite a bearing on her mother. “My mother who has been suffering from osteoporosis for years and was additionally on medication for cholesterol and blood pressure, found it increasingly difficult to help dad with activities like giving him a shower, until it became impossible for her to handle him. To make matters worse, she started showing signs of dementia herself. I saw it coming when she began misplacing expensive jewellery and was completely clueless about it. As I had sadly expected, a few years ago my mother too was diagnosed with Alzheimer’s disease. Thankfully she is not completely dependent, although she cannot be left alone either,” says Malak with a deep sigh.

Needless to say, all this has had quite a profound impact on Malak’s life all round. Besides the shock, another area that took a hit early on was her professional life. The company she was working for was not prepared to grant her the long months of leave required for the travel and treatment abroad. She then had to juggle between part-time jobs and looking after her father during the nights, in order to offer respite to her mother who now had to deal with the all the demands of handling the household responsibilities, as well as her ailing father. Eventually she had to give up working completely to cope with the increasing needs of the situation, which became even more demanding as the dementia progressed.

“Day after day, the situation was becoming harder to handle especially with no health insurance or family support. God responded to my prayers and provided a way out of our situation, when about three years ago my sister, Dr Hana Zabarah, was offered a job at Georgetown University Qatar. She wanted to be part of the solution to our predicament, and hence we moved from Yemen to Qatar. This has meant we now have access to affordable and good quality healthcare, thanks to Qatar’s healthcare policy,” explains Malak thankfully.

Naturally the emotional and physical impact of being the primary caregiver to both her parents has been even more profound. The practical aspects of looking after her ailing parents continue. With domestic help being available only for the daytime hours, Malak now finds herself doing the night shift almost every night. This has meant precious few hours of sleep everyday and that too not without constant disturbance. Weekdays, weekends and holidays merge into long hours of caregiving, with just a few hours of respite.

Her life is marked by precious few moments of socialising if any, brief interaction with the outside world, and the emotional turmoil of endless hours spent looking after her once active, independent parents, who are now literally “drifting away” in front of her eyes. Besides, she has to deal with mood swings and even changes in personality and behaviour patterns – typical of people affected by dementia.

“The darkness Alzheimer’s disease is eating away my parents’ brain cells up to this day. I love my parents dearly and this love helps me cope with the difficulties I face. I am thankful for all the blessings I enjoy, no matter how small”, she says gratefully.

Summing up her experiences, Malak concludes, “I sincerely advise people whose loved ones suffer from this dreadful condition to come to terms with the situation. There’s no point in denying it or living in shame; it’s a disease like any other. It’s important for families to stay together and support each other through times like this. I believe it is cruel to leave an ailing parent in an institution or home care; tender love and warmth of a family is their primary need now. After all, they spent most of their life caring for their family and we should now respond by reciprocating that love and care. We will be blessed by serving them.”

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