Family struggles through the slow decline of dementia

Thalia (not her real name) was only 14 when her father was diagnosed with dementia. The years that followed have been filled with therapy sessions and appointments under an intervention programme at a centre in the city.

Every two weeks, Thalia drives her father to the centre from their home in Batu Kawa, Kuching. Sometimes she joins the class as well to encourage him to develop friendships with others who are also suffering from dementia.

Some days are good. But on other days, her father is just not in the mood.

Dementia is defined as a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes and impaired reasoning.

For Thalia’s family, it has been 15 long years of watching his slow decline. The therapy sessions have helped – at 67, despite losing his memory, he can still feed himself and converse with others. And he still loves a good joke.

“My father likes to tease me, calling me King Kong,” Thalia said when met by MalaysiaNow.

But the Covid-19 pandemic has significantly added to the burden of efforts to arrest any further decline in his condition.

He has stayed mainly at home since the virus was detected in the country early last year, and the family takes extra precautions to ensure that the rest of the household is also safe from infection.

Sometimes he attends his therapy sessions but this, too, depends on the Covid-19 situation.

The last few weeks have been particularly difficult as his mind has been playing tricks on him.

One night in particular, he became extremely agitated, saying he could hear someone whispering behind him telling him that someone wanted to kill him.

Unable to control him, his family called the emergency services for an ambulance to take him to hospital.

But their request was refused.

“I called several times, asking for an ambulance,” Thalia said. “But the ambulance officers said they weren’t going to come because they couldn’t.”

Thalia’s father is among some 50 million people worldwide afflicted with dementia. According to Alzheimer’s Disease International, 123,000 people in Malaysia had dementia in 2015.

The number is believed to have doubled last year, and it is projected that half a million people in the country will be diagnosed with dementia by 2050.

The number of institutions and residential care centres for the elderly has been growing, but experts say it is still not enough to cater to the needs of those with dementia.

The pandemic has also put patients under huge strain.

CS Ghan, project director of the Alzheimer’s Disease Foundation Malaysia, said the country lacks enough healthcare professionals trained in the care and treatment of dementia patients.

In the meantime, the number of senior citizens in need of such care has continued growing.

The real challenge, according to Dr Ismail Drahman of the Sarawak Mental Health Association, is reaching patients in rural areas.

“In Sarawak, for example, rural areas are a huge challenge,” he told MalaysiaNow.

“I understand this because I have visited places without a proper basic road system where people depend solely on boats.”

The fear is that patients suffering emotional disturbance might jump from the boat into the river.

“In our local setting, usually they ask the police to take the person to hospital,” Ismail added.

Ismail, who is a psycho-geriatrician, said there are many conditions which can cause behaviour changes in older people.

“It can be due to confusion as a result of high salt intake which prompts cognitive decline (electrolytes), or a stroke, or the side effects of medication,” he said.

Ghan meanwhile urged the government to expedite the implementation of the Malaysia National Dementia Plan, which was delayed due to the pandemic.

In the meantime, Thalia’s family continues to struggle with providing holistic care for her father.

When they finally managed to get him to the hospital, he was diagnosed with behavioural and psychological symptoms of dementia. For five days, he behaved aggressively and would often hallucinate.

“He said he smelled unpleasant odours,” Thalia said. “He could not sleep at night. Most of the time he would stare at the wall.

“It’s like he was talking to someone but no one was there.”

Doctors have told the family that his hallucinations and nightmares are likely to become the new routine. But while the hard work appears likely to get harder, Thalia is determined to do everything she can for her father.

“My heart is broken,” she said. “All we can do is offer our help and watch as his condition becomes worse.”