Living A Fulfilling Life With Dementia, Breaking The Stigma – Sharifah Tahir

Unless we are personally living with dementia, we can never fully comprehend the experience. However, we can choose to honour the humanity and personhood of those living with it.

July 2022 was a significant month for Anjang and his wife, Sarimah. They had planned to go for Hajj together, but sadly, several days before the departure date, Anjang tested positive for Covid-19. Even though he was deeply disappointed, Anjang insisted that Sarimah went on the journey without him. 

During Sarimah’s absence, Anjang’s daily routine started with caring for the six feline friends he adored, feeding them, and cleaning their cages. He then prepared his breakfast, after which he spent his leisure time browsing scientific publications and calling up friends to chat.

Anjang and I had our regular phone calls; I cherish his insights on life and spirituality as they opened up new perspectives for me. Occasionally he had brief but pleasant chit-chat with my 89-year-old mother living with dementia. Anjang never missed his weekly prayers at the mosque. 

These snapshots may sound like typical everyday activities for anyone. But they are notable in Anjang’s case. That is because he is living with Lewy Body Dementia, a type of dementia with its own unique symptoms. He was diagnosed in 2017 but started experiencing symptoms way back in 2008.

Anjang knew he would miss his wife when she was away and recognised that he needed her support. However, his unwavering faith in God and self-awareness gave him all the confidence he needed to take care of himself. He made it on his own for the month of July 2022, but it was not easy. And he was overjoyed when his wife returned after completing her Hajj.

Today, with Sarimah’s constant support and love, Anjang continues to champion the cause of raising awareness about dementia. The challenges he experiences as an individual, and a member of society living with dementia have brought out the advocate in him. He felt driven to speak out and to act and reached out to Dementia Singapore.

That was in 2019. Since then, Anjang has proven to be an effective advocate. His relentless efforts are motivated by knowing too well what it is like to live with dementia — “it is very tough”. He feels for others with dementia and has a soft spot for care partners. 

Over the years, care partners, persons living with dementia, policymakers and other stakeholders have sought his advice and insights. His footprints are in various projects that have brought Singapore closer to becoming a capable and dementia-inclusive society.

One of these is Voices of Hope, which has paved the way for others with personal experiences to become self-advocates. The Wayfinding projects, which began in numerous housing neighborhoods and have since expanded to include public transportation systems and facilities, aim to support individuals with dementia to navigate their surroundings independently and be socially inclusive. 

Concerned about the higher rates of dementia amongst the Malay community, Anjang established the Chapal Malay Dementia Community in 2018, a platform that focuses on creating dementia awareness amongst this population group.

He conducts a monthly “Kopi Meet” where he shares his story and insights. But mostly, he encourages persons with dementia and care partners to share their stories and perspectives. He gives talks about dementia and how he “sustains’’ himself.

He also does home visits to support his peers and their families. This activity gives him satisfaction and offers hope to those he supports. So, he makes the home visits a priority even when he himself is feeling under the weather because “I understand what they are going through. I feel their struggle and pain. And I rejoice when they feel supported and see hope”.

Anjang has become a familiar name in dementia advocacy in Singapore. His tireless efforts and contributions have earned him numerous commendations, including being nominated as New Straits Times Singaporean of the Year and the Tan Tock Seng Hospital Singapore Patient Advocate Award. 

He is grateful for the recognition, which validates his invaluable contributions, and that of his peers. But his ultimate motivation is to please God and strengthen his relationship with Him through his service to others. 

Anjang’s story exemplifies hope, resilience and perseverance, defying the misconception that individuals living with dementia are incapable of having fulfilling lives. The way he lives with this progressive condition is a testament that persons living with dementia can still enjoy the simple joys of life and make their own informed decisions while they still can.

“People talk about dignity for persons with dementia. But do they genuinely grasp what it means? Speaking on our behalf, making decisions for us, treating us like needy or inferior individuals is not giving us dignity.

“Dignity is about respecting us as individuals, acknowledging our aspirations, supporting us based on our needs and meaningfully engaging with us rather than using us as tokens or as inspirational tools,” said Anjang when asked about his perceptions of dignity.

Anjang will be going for Hajj at the end of June this year. He is determined and excited about this once-in-a-lifetime journey, full of spiritual meanings. “I know it will be very challenging. And I also know Allah will make it manageable for me”.

This time around, it will be Sarimah, his beloved wife and most loyal companion and care partner, who will be caring for the cats and living a month without Anjang by her side. I wish Anjang a very special spiritual experience that he has been craving for. And I offer a prayer I often share with him –May Allah be with you always. He is the best protector.

This narrative serves as a reminder that unless we are personally living with dementia, we can never fully comprehend the experience. However, we can choose to honour the humanity and personhood of those living with this condition.

As a society, it is important that we create spaces where individuals with lived experience can speak for themselves, engage meaningfully and contribute to the best of their ability. By embracing and respecting them as valued members of our family, community, and society, and by inviting them to share their insights and needs, we can offer the right kind of support and environment they need. This way, everyone thrives.

Anjang Rosli is a person living with Lewy Body Dementia and a self-advocate. Sharifah Tahir is a care partner and advocate, Teepa Snow Positive Approach to Care© Independent Advanced Consultant and Trainer, and Founder of UniquelyMeInitiatives, a non-profit for care partners and persons living with dementia.

  • This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.

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