SINGAPORE – The phrase “person with dementia”, or PWD, often leads to a mental image of someone who is helpless and needs care.

But Singaporeans Alison Lim and Anjang Rosli are changing that perception. Both have young-onset dementia, which means that they were diagnosed with the neurological condition before they were 60 years old.

Both Mr Anjang, 58, and Ms Lim, 65, are self-advocates for PWDs, going the extra mile to help others who may not know how to manage the physical and mental decline that comes with dementia.

They are jointly nominated this year for The Straits Times Singaporean of the Year award, presented in conjunction with UBS. The award recognises inspiring Singaporeans for making an impact on society.

Dementia is a condition that causes progressive decline in cognition and reasoning, making it difficult to carry out everyday activities. The best known type is Alzheimer’s disease.

But Mr Anjang has another type, Lewy body dementia, which he was diagnosed with in 2017.

He often has hallucinations or forgets things. He also has diabetes and symptoms of Parkinson’s disease, a neurodegenerative disorder which leads to muscle tremors and difficulty with walking and balance.

Ms Lim was diagnosed six years ago with primary progressive aphasia, a type of dementia that affects her speech processing centres. She mixes up words, perhaps saying “car” when she means “phone”. Her symptoms include headaches and an inability to follow conversations.

Mr Anjang and Ms Lim call each other “sister” and “brother” and support each other on outreach and awareness projects. They personally support dozens of PWDs and their care partners by suggesting care solutions or offering a shoulder to cry on.

While fighting their own battles with illness, they spend their days advocating for innovations to empower others like them. Mr Anjang, for example, volunteers with projects at transport hubs that help PWDs to navigate Singapore on their own.

Both he and Ms Lim want to show that PWDs and care partners can still have fun and enjoy life with dignity.

They share their stories on social media and on platforms such as social service agency Dementia Singapore’s website. 

Mr Anjang, a retired chemical plant superintendent and father of three, founded the Chapal Malay Dementia Community on Facebook in 2020 in order to reduce stigma around the condition. He is also working with counterparts in Malaysia on developing educational modules for care partners.

This year alone he has answered dozens of calls for help from care partners in Singapore who do not know why, for example, a parent is afraid to enter a bedroom, or is unable to use the toilet and thus defecates outside.

He will visit such homes “like a detective”, he says with a smile, and help figure out what triggered the problem. For a PWD, a fluttering curtain can create frightening illusions and must be replaced. For a person with toilet issues, a routine might need to be established.

Most of the time, the PWD does not feel safe and is unable to express that.

“People with dementia need to feel safe,” he says.

Ms Lim, a retired hotel industry consultant, founded Dementia & Co with her 25-year-old daughter, Ms Jamie Lynn Buitelaar. They organise tea dances and outings for PWDs and their caregivers and also engage community groups in dialogues to destigmatise dementia.

Says Ms Lim: “Do not fear dementia. It is not contagious but it can affect anyone. Engage with us. Do not pity or patronise us.”

Mr Anjang says the same. “We don’t want your sympathy.”

He adds: “With the right guidance, knowledge and empathy, people with dementia can sustain themselves, it’s a manageable condition.”

Support from others in the same boat has been invaluable to them and it is why they continue to extend a hand to others, despite their own challenges.

Mr Anjang says: “You go to a doctor and sit with him for only half an hour, but volunteers like us can sit with a family for four to five hours to really understand what the person is going through.”

Ms Lim says she is here today only because of the support from other PWDs and their families.

She adds: “Let’s continue to show the world who we really are and help the world understand us and dementia. Let’s have fun.”