The World Health Organisation describes dementia as a syndrome where a person’s cognitive function deteriorates beyond what might be expected from biological ageing – with Alzheimer’s disease being the most common form of dementia.

For Sharifah, the diagnosis was devastating as her mother was a fierce and independent woman with a zest for life. A midwife by profession, she left her job after getting married but always prioritised the importance of education for her nine children.

“Even when she was 79 years old, she was still driving like a Formula One driver,” Sharifah, 56, joked about her mother, when speaking to FMT.

She said it was heart-breaking to see how her mother can no longer recognise her, or any other family member.

During the early days, the family did not have much information about the disease. “I regret that I made decisions and did everything for her as at that time, I was also dealing with my own emotions,” recalled Sharifah, who cares for her mother full-time.

However, an incident at a doctor’s office made her realise that despite the dementia, her mother was still an individual in her own right.

“When the topic of medication came up, she turned into a lion. She was adamant that she did not want to take any pills. I remember looking at her and it became clear to me: she’s still a person who knows what she wants.”

The family respected that decision and took her off medication for dementia and depression. As a result, her mother’s condition improved, Sharifah said.

“I then changed my approach because I saw that I still have this person who is my mother, and I am going to support her,” she explained.

She also said she doesn’t identify with the term ‘caregiver’, preferring the term ‘care partner’ instead.

“A caregiver means that you are giving, while the other person is receiving. So, the other person is passive. But in a care partnership, it’s a dynamic relationship of interdependence and gives dignity to the other person.”

The rewards

In fact, Sharifah attributed the person that she has become today to her experience of being a care partner with her mother.

“I look at life in a more hopeful way because despite everything, I can see my mom really trying and she’s still fighting,” she shared, adding that there are days when her mother, today 88 years old, can stitch, read, and even type her name on the iPad.

There are also moments when her mother tells her how grateful she is to have a daughter like Sharifah. “Out of the blue when she no longer recognises me, she would say that. It only lasts for a moment, but it makes all the hard work worth it.

“Or she would say, ‘I know you, you’re my daughter. You ingat I tak kenal you lagi, kan? These moments don’t come all the time, but I really appreciate them because it is one of the ways that I have survived this journey,” she shared.

Other forms of respite for her include enjoying a cup of latte or ice cream on the balcony. She is also grateful to her support system which includes family, friends, and even a neighbour who drops off food for her every now and then.

“The best thing is that my mother and I have become best friends and that has taken our relationship to another level. Every night, I look forward to watching television with her. My life is different, but I like it,” she shared.

A vision

“Malaysia and many countries in the world are responding to dementia as a medical issue. However, upon diagnosis and with no medication to treat dementia, a patient goes home and it’s all about social care. I believe that in the right environment with support and care, a person with dementia can function well to a certain point.”

Her vision is that Malaysia and the rest of the world will become “dementia-capable, competent, friendly, and positive”.

She shared however that to achieve this state, knowledgeable and skilled healthcare professionals and social workers were needed to provide tailored care as each dementia experience is different.

To become a dementia-friendly nation, she added, communities need to be more aware of dementia and how to interact respectfully with a person who has dementia.

“After all, people with dementia are human beings and they have aspirations, too.”