An activity session for dementia patients at the Caring With You Dementia Enrichment Programme Centre in Damansara, Kuala Lumpur. Pix by Shiraz Yasmine Ali
Elaine Khaw (centre) with her husband Datuk Ooi Eow Jin (right) and son Raymond Ooi.

CARING for a person afflicted with Alzheimer’s disease (AD) demands a great deal of time and commitment from their caregivers and family members.

AD is an irreversible, progressive degenerative disease that affects the multiple functions of the brain cells. Eventually, AD patients lose independent living skills and become dependent on others for help and care.

Statistics from the Health Ministry show that AD is the most common type of dementia and accounts for about 80 per cent of cases in Malaysia.

The biggest misconception about dementia is that it is a part of growing old.

Dementia is a disease, like cancer. It is not a normal part of ageing.

“The majority of dementia and AD patients fall in the above-60s age group, and there is no cure,” said Deidre Low, founder and chief executive officer of the Caring With You Dementia Enrichment Programme Centre in Damansara, Kuala Lumpur.

The centre runs activities for persons with dementia to give them back their self esteem, putting the laughter and smiles back into their lives.

Low is passionate about spreading awareness about dementia because her mother has AD.

“There’s a stigma associated with the disease.

“Most families prefer to keep their family members who are afflicted with the disease away from the public eye for fear of embarrassment.”

Initially, the cognitive decline of Low’s mother was slow so her sister could cope with the help of a maid, but when she became aggressive and exhibited symptoms of AD, which is the loss of time and space, her sister needed help.

“My sister had to calm her down every day. Thus in 2014, I left my job in Singapore and came back to help. In my mother’s mind, she was still a young child living with her parents. Every day, she kept saying ‘I want to go home’.

“Because of my lack of understanding of dementia, I tried to use logic to reason with her that her mother could not be alive as she herself was 82.

“I was frustrated, lost my temper and in return, she responded more aggressively to me. None of us caregivers understood her or knew how to communicate with her.

“It got progressively worse. She was left at home with the maid but I had to constantly come home during work hours as the maid could not cope. Thank goodness, I had a very understanding employer,” she said.

“It was in late 2015 that we started looking for a dementia daycare centre that could help her and us caregivers.

“We visited many daycare centres/nursing homes that claimed to offer care for people with dementia, but were disappointed with what was available.”

Last year, Low and her co-founder travelled to Perth, Australia, and Singapore. Over eight months, they visited organisations that practised a person-centred care approach for people with dementia.

They took courses and became certified dementia care facilitators with Dementia Care Australia, with the aim to set up their own centre, practising person-centred care in Klang Valley. It took time to find a house
with a garden that fitted their needs.

Finally, in April, the centre became a reality.

According to the Alzheimer’s Disease Foundation Malaysia (ADFM), the care required by a person with AD increases and alters as the disease progresses.

Living with a person with AD was challenging, said caregiver Rebecca Lee, 33.

Her father, Lee Kong Hon, 71, who suffers from AD, went missing in March after a visit to Kuala Lumpur Hospital (HKL), for 11 days in March.

Rebecca said the family focused on spreading awareness about her father’s disappearance, hoping someone would recognise him. It worked.

Her father’s condition has now come to a point where he does
not recognise his family members and wants to go to work even though he retired years ago.

“Eventually, we discovered that he is comfortable in a social setting, surrounded by ‘friends’, so we placed him in a care centre where he is adapting well.”

Caregiver Elaine Khaw Lean Kee, 77, has two family members who require 24-hour supervision.

Her husband, Datuk Ooi Eow Jin, 79, is an AD patient while her son, Raymond, 53, has been battling brain tumour since he was 14.

In the early stages of AD, Ooi was mobile and could eat on his own, but now he is wheelchair-bound.

A well-known pianist, composer, arranger, record producer and music instructor, Ooi is no stranger to the entertainment industry.

He composed and arranged songs for Sudirman, Francis Yip and the Alleycats.

Today, the family relies on charity to get by and pay for the rental of their home and food.

As the principal caregiver to both men, Elaine is tasked with caring and supervising them every day.

Elaine herself suffers from depression.

She said she has less than four hours of sleep daily.

“It was easier during the early stages of AD when my husband was able to walk about and eat by himself.

“Now, he relies on me completely, and it is difficult to look after him and my son by myself, but I have no choice.”