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Young Onset Dementia: A Personal Story Of Resilience And Hope

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Young Onset Dementia: A Personal Story Of Resilience And Hope
Credit: Dementia & Co
As someone who had long been volunteering with persons living with dementia (PLWD) and other health conditions, Alison Lim had a strong sense that something was happening in her brain. Blanking out during a work presentation, losing the ability to find words to speak, getting words mixed up – these were the early signs since her 40s. At first, the incidents were spread out over many years, and then they began to be more frequent.
She sought medical help, and was diagnosed with Primary Progressive Aphasia (PPA), a type of dementia that mostly affects people in their 50s and 60s. Because Alison was under 65, she fell into the category of persons with Young Onset Dementia (YOD), which affects about 5% of people with dementia. Diagnosis in such cases is often delayed because of irregular symptoms.
The diagnosis was devastating – yet also a relief because it was definitive. She was prepared but over time, her confidence faltered.

"Looking back, I realise that all this was caused by the shock. And because I wasn’t exercising, I developed back and neck problems."

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Young Onset Dementia: A Personal Story Of Resilience And Hope - Alison Lim & Jamie
Credit: Dementia & Co

"After that, if I'm not in a good position, I’m prepared to go into a nursing home. And I began to prepare, plan, research the right information and professionals, taking part in dementia studies and programmes."

For young onset dementia, peer support is everything
If the diagnosis sent her on a downward spiral, it also lit a fire in her, to work with her daughter Jamie, now 27, to raise awareness and advocate for PLWD. In 2016, they founded their movement, Dementia & Co.
Their aim is to raise awareness about dementia, remove the stigma around it and prove that life with dignity and fun is possible.
Young Onset Dementia: A Personal Story Of Resilience And Hope - Workshop
Credit: Dementia & Co
Since peer support was not happening much at the time, Alison embarked on her own version of it. She knew first-hand how traumatic the lack of it could be.

"I had no one to talk with who could understand the disease."

Then she worked with a doctor in a research programme.

"She would allow me to speak my mind, explain my situation – I felt heard. This was so important – and that's what we do today with the groups that we organise. Everyone talks, listens and supports each other because everyone is experiencing the condition in some way. We are all learning from each other."

"I myself had wanted to learn more about the condition and the brain. So every time I had a checkup, I would 'stalk' people who seemed like they had dementia, especially YOD. I would begin a conversation and make friends."

"Surprisingly, they would accept my invitation to come to my home. It began with one couple, one family, and then a couple more, and then a couple more. Our home became the centre where people could speak openly and learn from each other about our journeys. The conversations were deep and often emotional."

Alison also became a source of information for fellow PLWDs.

"Because I was learning a lot from research programmes and experts here and overseas, I could share very current findings and information which neurologists sometimes have no time to tell patients. All this built a deep trust, so from two people, today we have connected with more than 200 families."

On the social side of these gatherings, Alison makes sure that there is always a fun side to things – cooking and eating together, dancing, singing, playing games.
Young Onset Dementia: A Personal Story Of Resilience And Hope - Tea Dance
Credit: Dementia & Co
What is dementia?
Dementia is not a normal part of ageing. It is an illness that affects the brain, leading to progressive memory loss, decline in intellectual ability and personality changes.
It can happen to anyone, but is more common over the age of 60 with the risk increasing with age. Currently, one in 10 people above 60 are suffering from dementia and this number is expected to increase to 152,000 by 2030.
This illness affects a person’s ability to think, learn new information, solve problems and make decisions. Presently there is no cure for dementia, although there are treatments to help manage the symptoms and slow down the progression. Adopting a healthy lifestyle can reduce one’s risk of developing dementia.
There are different kinds of dementia, and these are the most common:
For more information on dementia:
Running against time with young onset dementia
Alison has, since her diagnosis, been working against the clock – she was told that she might have five to eight years before it becomes more challenging. It is no wonder that she uses her uncommonly effective communication skills with such passion and urgency.
Along the way, she has discovered that dementia is not yet as well understood as it should be. For instance, many specialists she met had to google “PPA” when she was seeking opinions after her initial diagnosis of Primary Progressive Aphasia or PPA.
She shares another incident: “A public talk at which someone asked the medical professional what to do as her mother was withdrawing into silence. The response was, don’t try to engage with your mother, just take charge. “I was shocked: What? Stop trying to talk to her mother? I wanted to scream!”

"This was against everything that we at Dementia & Co are promoting. We cannot allow this to happen. This is what I want to tell the world: don’t leave us alone because we can no longer communicate as we used to. If you do, we’re going to be sad, lonely, angry – feeling all kinds of negative emotions that will wear us down. People living with dementia must be allowed to communicate and express themselves however they can, to feel encouraged to share their emotions. Society must make the effort to understand these alternative forms of communication."

Young Onset Dementia: A Personal Story Of Resilience And Hope - Workshop 2
Credit: Dementia & Co

"When the time comes when I cannot talk anymore, I know — because we’ve discussed it — that Jamie will know to look at me, wait for me to look back at her, read the signals. We are already creating a language of hands, eyes and touch."

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Audrey Perera

Audrey Perera is on a mission to simplify her life (and hopefully those of family members too!) and lighten her footprint.

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