People Archives - DementiaHub.SG

Kian Yi’s Story: His Goal — Back to the Workplace

shekinah — Wed, 06 May 2026 07:38:18 +0000

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Emily Ong sheds light on Ho Kian Yi’s journey, a man navigating cognitive impairment and aphasia, showing how determination and support helped him overcome barriers to find meaningful work.

About Ho Kian Yi

Kian Yi’s brain injury from the accident on the fifth day of his solo bike adventure left him with cognitive impairment and aphasia, in addition to his physical disability. For many people, this would have been seen as an end.

However, he did not give up on himself. Instead, he embraced the challenges and persevered to overcome.

His years of rehabilitation, working with different therapists since 2018 changed the trajectory of his life. Today, Kian Yi is gainfully employed for over a year, working in a landscaping company for three days a week.

This flexible working arrangement allows him to have sufficient rest days to recharge and recuperate from fatigue — one of the most challenging symptoms after his brain injury.

He joined the Voices for Hope programme in October 2023 under Cohort 14. Despite his aphasia, Kian Yi does not shy away from interacting with people. He uses alternative communication strategies to help him express and enable others to understand what he is saying, such as through keywords, gestures and drawings.

During one of the sessions, when the conversation turned to setting personal goals, Kian Yi expressed that his primary goal was to secure a job and make his way back to the workplace. It was evident how determined he was to achieve this, making it his personal mission. He did not surrender his life but moved forward with a goal despite his diagnosis.

Having a SMART goal is beneficial for persons living with dementia because it provides a strong sense of purpose and motivation.  It does not make it easier, but having a goal keeps you going amid challenges because you have a target to achieve, which means a lot to you at a personal level.

Armed with this mission, Kian Yi started to seek for solutions.

The Job Search

Kian Yi’s cousin knew which organisation to direct him to in seeking a job. This was a blessing, as not many people have informed relatives or friends to guide them to the relevant resources. In fact, many would not know where to begin if they were to re-enter the workplace.

Evidence suggests that there are employment inequalities for people living with dementia (Louise Ritchie, et al., 2020).

Although persons living with dementia or cognitive impairment may have the skills and experience to remain in the workplace, they may choose not to due to stigma. Despite dementia-friendly initiatives in Singapore and other countries, the lack of awareness, stigma, and discrimination are barriers to those who wish to continue working.

For Kian Yi, after a series of interviews and assessment of his past work experience and skills, the organisation matched his profile with a specific job, providing him an opportunity to work.

He is under the care of an understanding supervisor who is always ready to support him. With the help from supportive colleagues, Kian Yi is able to deliver and meet expectations. At the same time, Kian Yi impresses his colleagues by being a responsible employee and diligently carrying out his duties.

Another important factor is the workplace policies and practices at Kian Yi’s company. The organisation embraces inclusive hiring and implements supportive policies, such as a three-day work week arrangement, which allows Kian Yi the much needed rest days.

Kian Yi’s story illustrates that persons living with cognitive impairment and aphasia can continue to work. However, greater awareness and multidisciplinary support are required to shift current employment attitudes, HR policies and workplace practices to better support continued employment for those diagnosed with cognitive impairment who wish to remain in the workforce.

There is also a need for systems, such as the Employment Special Interest Group’s 4-Step Framework,  that help individuals understand their personal resources, access available support, and work in inclusive environments that enable them to continue to contribute at the workplace

Conclusion

Kian Yi’s journey shows that a diagnosis does not define a person’s ability to contribute meaningfully to the workplace. His experience highlights the importance of inclusive workplace practices, supportive policies, and greater awareness so that individuals who wish to remain employed are given the opportunity to do so.

Below is the conversation that I had with Kian Yi and his message to persons living with dementia.

1.How did you come to know about Bizlink Centre?

Kian Yi: My cousin told me about this organisation and told me to approach them if I am looking for a job.

2. Was there any support with your job application process, such as assistance with your curriculum vitae and preparation for the interview?

Kian Yi: They asked me about my strengths and interviewed me a few times to check on my strengths and limitations.

3. What made you feel comfortable accepting the job offer from your current company?

Kian Yi: I have a very understanding superior who understands my strengths and limitations

4. Please describe the training that you underwent during the on-boarding process and the probation period, and any support or work adjustment made to accommodate your cognitive challenges like attention and aphasia.

Kian Yi: I am supposed to do up daily reports for their projects. My superior showed me the reports done previously and told me to go through them. He told me [that] I could ask him if I have any questions.

5. If you are comfortable sharing, we would like to know how do you manage difficulties you encountered in executing your job, such as preparing the reports.

Kian Yi: I will keep on checking my work to see if I have made any careless mistakes.

6. How does having your current job make you feel, and would you continue working for this company?

Kian Yi: I feel comfortable working in this job. With an understanding superior, I know I can ask him anytime I have any questions.

Originally published on Dementia Voices by Emily Ong on Dec 5, 2025

Ritchie, L., Egdell, V., Danson, M., Cook, M., Stavert, J., & Tolson, D. (2022). Dementia, work and employability: Using the capability approach to understand the employability potential for people living with dementia. Work, Employment and Society, 36(4), 591–609. https://doi.org/10.1177/0950017020961929

ABOUT THE WRITER

Emily Ong

Emily Ong has been a strong voice in Asia and globally since her diagnosis in 2017 with mild cognitive impairment and young-onset dementia. A self-published author of “Guide to eating well and cooking safely with cognitive changes” and also the first author of a book chapter in “Creating Empowering Environments for People with Dementia” published by Routledge. Lead author of the WHO commissioned peer-reviewed analysis article “Improving care for people with dementia through co-creation of action plans in the Western Pacific Region” published in BMJ. Her first-hand experience with inequity and stigma has led Emily to co-founded several initiatives, such as the Employment Special Interest Group. Emily was involved in the co-conceptualisation of the Voices for Hope programme and was also a former VFH facilitator and Board Member of Alzheimer’s Disease International.

The post Kian Yi’s Story: His Goal — Back to the Workplace appeared first on DementiaHub.SG.

Up Close with Youth Volunteers: Terrence Ding

aleene.chow — Tue, 05 Nov 2024 05:24:44 +0000

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Terrence Ding has volunteered with Dementia Singapore since last year while pursuing a Diploma in Health Services Management at Republic Polytechnic. In March, he became Dementia Singapore’s first Youth Community Leader. We invited Terrence to share more about his aspirations and what being a youth volunteer leader in the dementia space means to him.

Hi Terrence, please tell us about yourself.

Hello! I just graduated from polytechnic not too long ago and I am currently studying real estate. I am actively volunteering with several organisations – one of them being Dementia Singapore (DSG) – and mainly focusing on my personal portfolio development while waiting for national service enlistment.

How did your involvement in volunteering begin?

Initially, I started volunteering because of the National Youth Achievement Award (NYAA). I wanted to get the NYAA and we had to clock in a number of hours across different programmes. After that, I continued to volunteer on my own because I find it an enriching experience.

Why did you decide to volunteer with Dementia Singapore (DSG)?

Back at Republic Polytechnic, we did a project with DSG at the Jurong Point New Horizon Centre. Going through that experience helped me to see how my volunteering efforts could help those ah gongs and aunties, and possibly be of relevance to my life in the future – dementia is not only for seniors. There is also young-onset dementia that affects younger people. Helping out at DSG helps me understand more about dementia and how to reduce risk of developing it. Volunteering here also helps me understand what it’s like being a person living with dementia, and seeing from their perspective.

What has your experience been like volunteering with Dementia Singapore?

I would say it has been great, because when I give feedback, it’s taken into consideration. I feel valued, like a member of this organisation. Volunteering at the centres has given me first-hand experience of interacting with persons living with dementia, which is a very good skill to have!

Could you share with us a particularly memorable experience volunteering with us?

During a volunteer session at Jurong Point in June, I was helping to conduct an activity with a group of students when a lady living with dementia started to talk to us. She shared with us about her past, her education and so on. It was a very enriching experience for me because I was not expecting such a level of interaction that day. The experience reminded me that persons with dementia are the same as everyone else. They may be forgetful sometimes, but they too have their life stories to tell, and these stories still resonate with us to a certain extent.

How do you feel about being Dementia Singapore's first Youth Community Leader?

Honestly, there is a bar to set, being the first Youth Community Leader. Being a leader is not just about helping out at one session and then going home. It is also about helping the staff or the organisation to see how they can develop further, such as pushing a programme to new heights. However, it is also enjoyable because I like to help.

What do you hope to achieve as a youth volunteer and a Youth Community Leader?

As a Youth Community Leader for DSG, I wish to help the organisation achieve its vision to build a dementia-inclusive society. On a more personal level, I wish to help solidify this role because this is a new programme. Moving forward, I hope that future Youth Community Leaders can feel empowered to make a difference, working alongside their respective organisations.

In one word, how would you describe your impact on the dementia community so far?

Okay, it is a little tough to narrow it down to one word, but if I had to choose, it would be ‘supportive’. Actively volunteering and contributing my knowledge to fellow youths is my way of supporting the dementia cause and helping persons living with dementia.

What changes do you hope to see in the dementia sector in the next five to ten years?

I hope to see changes in two broad categories: one being care and treatment, and the other for awareness and destigmatisation. Let me talk about care and treatment first. The change I would like to see are stronger policies and legislation to support dementia care and research. If we invest more into research for dementia, like providing more funding, this money can help with early diagnosis.

Also, when we put more funding into developing treatments, we might even find a cure for dementia! As we know, there is currently no cure for dementia, and it is also not easy to be a caregiver. Some of this funding could go towards providing more support for caregivers.

We could also integrate technology in care and monitoring of persons with dementia. For instance, caring for persons living with dementia at the New Horizon Centres is currently quite labour– intensive. Leveraging technology could relieve the workload of care and monitoring by staff there. Technology could also help achieve more patient-centred care. Moving forward, I think that care could be more personalised for persons living with dementia.

As for care and treatment, I hope that there can be more support networks for persons living with dementia to engage with the community.

My second broad area is awareness and destigmatisation – I hope for more public awareness, which is what Dementia Singapore hopes to achieve as well. We need to keep educating the public to recognise signs of dementia and to be more accepting of persons with dementia. In doing this, we can reduce the stigma towards dementia. Sometimes, people may laugh at persons with dementia behaving differently from themselves because they think it’s funny. But if they understood why they are behaving this way they do after getting educated about dementia, they might be more empathetic towards persons with dementia. So yes, I definitely hope for the stigma of dementia to be reduced.

On a personal level, what dreams and aspirations do you have for yourself?

I have a lot of dreams! I’m young and I have many ambitions related to community service. I want to be able to share my experiences volunteering at many organisations thus far, especially with fellow youths who want to learn about community service. I hope to empower them to chart their own path and make a difference to our society – no matter which cause they support – and I want to advocate more for youth volunteerism.

This article has been lightly edited for clarity.

Terrence Ding

Terrence, a graduate of the Diploma in Health Services Management at Republic Polytechnic, is currently serving his enlistment. In his free time, he is deeply passionate about helping others by volunteering for various causes, including dementia-inclusivity in Singapore. He hopes to personally create positive change in his community.

The post Up Close with Youth Volunteers: Terrence Ding appeared first on DementiaHub.SG.

What Caregivers Want You to Know

Admin — Wed, 10 Jul 2024 04:59:45 +0000

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The best way to understand the complexities surrounding dementia is to speak directly to someone who is living with it or someone caring for a person with the condition. We are fortunate to hear from two caregivers, or as they prefer to be called, care partners, Sally Ridon and Serene Toh. As care partners, Sally and Serene emphasise the collaborative nature of caregiving, underscoring that it is not just about providing assistance but working together in a partnership of care and support.

Serene embarked on her caregiving journey when her husband, Kim Han, was diagnosed with Young Onset Dementia in 2021. Faced with the dual challenge of his diagnosis and unemployment, Serene left her full-time job to care for him, navigating the complexities of dementia with determination and resilience.

Sally’s caregiving journey began when her husband, Dan, was diagnosed with Young Onset Dementia following a heart attack in 2020. Drawing strength from her Catholic faith, Sally stepped into her new role with unwavering love and dedication, balancing her responsibilities with a proactive approach to understanding and managing the condition

Their stories, experiences, and insights shed light on the multi–faceted nature of caregiving for persons living with dementia. Read on to find out what they want you to know about dementia and the caregiving experience.

To Members of the Public

1. Dementia Is More Than Just Memory Loss

One of the common misconceptions about dementia is that it solely affects memory. Both Serene and Sally stressed that dementia impacts various aspects of life, often in significant ways.

In the initial stages of her journey as a care partner, Serene would meticulously write out instructions for Kim Han, believing it would help him navigate daily life post-diagnosis since she was under the impression that his main issue was not being able to remember things. However, when he struggled to understand and follow these instructions, frustration set in. Serene would question why Kim Han was not trying hard enough. It was only later, as she gained more knowledge about the condition, that Serene realised dementia also impairs cognitive abilities, making it difficult for him to understand and follow instructions. This insight was crucial for her to adjust her caregiving approach.

Sally echoed this sentiment, emphasising that dementia also changes behaviour and requires a comprehensive understanding of its multifaceted nature. Sally recounted a poignant moment when Dan’s behaviour shifted unpredictably during a Christmas celebration at home with the family. Amidst conversation and laughter, Dan abruptly became overwhelmed and loudly requested silence. Everyone at the party was shocked, and Sally swiftly guided him to a quieter area to soothe him.

Through their personal stories, both Serene and Sally illustrated the profound impact of dementia on cognitive abilities and behaviour, emphasising the need for a comprehensive understanding of the condition to provide effective care and support.

2. Embrace The Personhood and Identity of Persons Living with Dementia

Maintaining the dignity and identity of persons living with dementia is vital. Serene ensures Kim Han feels included in social interactions, prompting his participation to reinforce his sense of belonging. This helps maintain his self-esteem and emotional well-being. For example, during casual chats with friends, Serene always involves Kim Han by asking him questions like, “That was so funny, wasn’t it?”. This approach helps him feel included as part of the conversation, even if he does not remember specific details.

Sally adopts a similar approach by adapting Dan’s lifestyle to make things “the same but not the same.” In other words, making adjustments to his environment and daily routines to maintain a sense of familiarity while accommodating his changing needs and abilities. For instance, persons living with dementia may have difficulty managing their finances. However, Sally places expired credit cards and foreign currency in Dan’s wallet, allowing him to maintain a sense of financial responsibility for his family. Dan takes pride in possessing a wallet, often counting and arranging his money in it. This approach affirms his identity and dignity, which supports his sense of self-worth.

Moreover, Sally adopts an empowering approach in assisting Dan with daily tasks. Rather than taking over when Dan encounters difficulties, she engages him by doing these tasks together. For instance, if Dan forgets to use soap while washing dishes, Sally gently intervenes by standing beside him and suggesting, “We must use soap when we wash the dishes. Come, let’s do it together.” This approach empowers Dan and fosters a sense of capability rather than dependence.

3. Step Up to Offer Practical Assistance

One crucial aspect where assistance can be invaluable is aiding persons living with dementia who may become disoriented in public areas. Kim Han occasionally struggles with orientation and has difficulty communicating, especially with strangers. Serene wishes that in moments of confusion, someone would approach him kindly, offering assistance to ease his fear and loneliness. Small acts of kindness, like calling the care partner of the person living with dementia to let them know that their loved one is lost or just being a calming presence, can turn a distressing situation into a manageable one. These gestures can make a big difference, reducing stress and isolation for both the person with dementia and their care partner.

4. Be Kind and Understanding

If you do not feel confident to offer practical assistance, Sally and Serene implored that members of the public be kind, empathetic and understanding. Public interactions pose challenges for both care partners and persons living with dementia. Serene recounted instances where Kim Han’s friendly gestures, like giving a thumbs-up to strangers, were met with judgment or confusion. She often found herself explaining his condition to mitigate misunderstandings. In these situations, she hopes for more understanding and less judgment, emphasising the importance of kindness and compassion towards those facing cognitive challenges

To Fellow Care Partners

5. Don’t Be Afraid to Seek Out Support

Both care partners emphasised the importance of a strong support system. Serene found solace in the understanding and accommodations from her friends and family. They included Kim Han in outings and provided emotional support, which was invaluable for Serene’s well-being. Sally also appreciated small gestures from friends, such as offering a listening ear without any questions asked. Such support helped her feel less isolated and validated her experiences.

Programmes like the Dementia Social Club have also been particularly beneficial for Sally and Serene. This programme, which enables care partners to engage in purposeful activities with their loved ones, serves as a safe space for Sally and Serene to express their emotions, seek assistance, and offer support to others in similar situations. Sally also added that, in inclusive spaces like this, she does not feel the need to explain herself or Dan’s condition since everyone there is knowledgeable about dementia. This sense of community helps Sally and Serene feel less isolated and validates their experiences, knowing they are not alone in their journey.

6. There is No Such Thing as a Perfect Care Partner

Both Sally and Serene stressed that caregiving is a continuous learning process and it is normal to feel imperfect in this role. In their view, there is no such thing as a perfect care partner.

In caring for a loved one with dementia, it is important to approach situations with gentleness, especially when emotions run high. For example, when Kim Han makes a mess at home, Serene’s initial reaction might be frustration, but she reminds herself that he is not aware of his actions. Reacting with anger does not serve a purpose, and so she has learnt to step back and “filter the drama.” Reframing her mindset helps Serene focus on resolving the situation rather than directing blame.

This approach has helped Serene prioritise and maintain composure in challenging situations. For instance, if she needs to use the restroom while out with Kim Han and returns to find him missing, she remains calm, knowing that she will eventually locate him. This mindset shift has brought peace of mind to both of them, improving their overall well-being in such moments.

Similarly, despite the challenges she faces, Sally maintains a sense of peace, acknowledging that anxiety about the future is natural. Her advice to other care partners is to lean into aspects in your life that give you strength, such as your family or your faith, and take things one step at a time, embracing the mantra “que sera sera”.

In conclusion, the insights shared by care partners Sally and Serene shed light on the multifaceted nature of dementia caregiving. They stressed on the vital role of collaboration, compassion, and practical support in uplifting persons living with dementia, and call for inclusivity, urging us to create environments where every person with dementia feels valued and understood. They also reminded caregivers to seek help when needed and embrace the journey, imperfections and all, finding solace in community support and perseverance. Through their shared experiences, Sally and Serene extended not just guidance, but a heartfelt invitation to join them in fostering kindness and making a meaningful difference in the lives of those impacted by dementia.

The post What Caregivers Want You to Know appeared first on DementiaHub.SG.

Supporting Caregivers Through Interactive Technology: Play2Care App

Admin — Mon, 08 Jul 2024 01:39:23 +0000

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The Institute of Mental Health (IMH) and Taggle have developed a new mobile application to enhance dementia caregiving through interactive gameplay. This user-friendly app aims to equip caregivers with effective communication strategies, making it easier to navigate the challenges associated with dementia care.

Understanding Dementia

Dementia is often misunderstood as a condition solely marked by memory loss. However, persons living with dementia can also exhibit significant behavioural changes as their condition progresses. These changes pose challenges for both persons with dementia and their caregivers.

Caregivers may find it difficult to manage these behaviours without understanding their underlying causes. Meanwhile, these changes, which stem from communication difficulties and cognitive decline, make it increasingly challenging for persons living with dementia to express themselves and communicate their needs effectively. This communication barrier often leads to frustration and misunderstandings on both sides, as explained by Dr. Yao Fengyuan, Senior Consultant and Chief, Department of Geriatric Psychiatry at IMH.

Introducing the Play2Care App

The app immerses caregivers in realistic scenarios tailored to Singapore’s context, such as navigating a familiar HDB flat environment and interacting over local cuisine. Through gamification and instructional videos, caregivers learn to apply the T.A.N.G.O approach effectively in scenarios commonly encountered in dementia caregiving.

Interactive elements like mini-games (“Spot the Difference”, “Find the Hidden Purse”) not only engage caregivers but also stimulate cognitive skills in their loved ones.

What is T.A.N.G.O?

IMH’s T.A.N.G.O communication strategy, developed by IMH clinicians, focuses on:

Tender Approach: Providing comfort and reassurance through patience and supportive body language.
Acknowledge: Validating emotions and unmet needs.
No Challenging: Avoiding confrontations and instead offering gentle cues and prompts.
Get into Simple Conversation: Using familiar phrases and clear choices to facilitate communication.
Optimise Environment: Making environmental adjustments to enhance engagement and independence.

User Feedback

Before its launch, the Play2Care app underwent a pilot test with a few caregivers. The results were positive:

100% of participants reported improvement in their Dementia Attitude Scale (DAS) scores.

80% felt more comfortable interacting with persons with dementia.

60% noted enhanced knowledge of the condition.

Ms. Ong Xin Ling, Senior Occupational Therapist at IMH, highlights the app’s role in expanding accessibility of caregiver education: “Traditional methods of psychoeducation are no longer sufficient. Play2Care offers a dynamic platform for caregivers to practice and implement communication strategies in a safe, simulated environment.”

Enhancing Communication in Dementia Care

Designed with elderly-friendly features and informed by caregiver insights, the Play2Care app serves as a valuable resource for families navigating the complexities of dementia caregiving.

“We are excited about the potential of Play2Care to transform dementia caregiving,” says Mr. Lee Seng Beo, CEO of Taggle. “By blending technology with compassionate care strategies, we aim to alleviate caregiver stress and enhance the quality of life for both caregivers and care receivers.”

Embracing Innovation for Better Care

The Play2Care app leverages technology to improve access to dementia caregiving resources and in doing so empowers caregivers in their caregiving journey. By equipping caregivers with practical tools and insights, it not only addresses immediate challenges but also fosters a more compassionate and supportive caregiving environment for persons living with dementia.

Join the movement towards better dementia care—download Play2Care today!

Download Play2Care on Google Play Store | Download Play2Care on Apple Store

The post Supporting Caregivers Through Interactive Technology: Play2Care App appeared first on DementiaHub.SG.

Caring Together as a Family for a Person Living with Dementia

Peter Cher — Thu, 28 Mar 2024 10:22:22 +0000

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Sarah Low wears many hats: she is a trained pharmacist, mother of two teenage daughters, J. and S., spouse to her husband, Joshua, and caregiver of her mother, Mdm Chng, who lives with dementia. As someone who switches between her various roles and juggles different priorities, Sarah navigates her responsibilities while moving together with her family as a team.

Over the course of a one-hour video call interview, Sarah shared from her wealth of experiences of caregiving with a member of the DementiaHub.SG team.

Communication is Key

A key point that arose in our interview with Sarah was that communication in her family – making decisions together, coordinating their schedules, sharing their feelings with each other, and for Sarah and Joshua, guiding J. and S. as they make sense of what is going on in the family – has been key for the family to move together as a team.

The family of four – Sarah, Joshua, and J. and S. – were living overseas during the early days of Mdm Chng’s dementia. During this time, Sarah and Joshua had an important conversation with J. and S. about the potential decision for their family to move back to Singapore for the purpose of living together with and caring for Sarah’s mother. This conversation enabled the family to agree on and commit to their shared goal of caring for Sarah’s mother back in Singapore.

Making Sense of the Journey Together

Through conversation, the family has not only been able to align on their purpose, but also make sense of their journey with Mdm Chng together. When the family of four moved back to Singapore and Mdm Chng began living in the same household with them, the family did not only have to meet the challenge of adjusting to life in a new environment, but also to adjust to what it was like to be around Mdm Chng, who had her own routines and habits, and who now lived with dementia. Mdm Chng, in turn, also began adjusting to life in this new household.

In their initial few years back in Singapore, the family struggled with the new living arrangement. Sarah shared that this was partly because establishing new meaningful and healthy routines for both Mdm Chng and the new household of five was not an easy task. While adjusting to this living arrangement, J. and S. especially struggled to make sense of their grandmother’s behaviour, which was influenced by her condition. However, with their approach of open communication and being available to listen to their daughters’ thoughts, Sarah and Joshua were able to guide them in making sense of what was going on with their grandmother. For example, J. and S. sometimes shared with Sarah that they attributed their grandmother’s behavioural flare-ups to themselves, asking whether Mdm Chng was angry with them. In response, Sarah and Joshua explained to them that dementia affects the brain, and that Mdm Chng’s symptoms and moods could be explained by her condition. Her forgetfulness could explain why she was misplacing items, and her struggle to make sense of her items’ disappearance could have led to her suspicion that others were stealing them. Sarah and Joshua also explained to J. and S. that sleep cycle changes such as sundowning that are often experienced by persons with dementia could result in mood changes, and that a person’s judgment, reasoning, and decision-making skills often decline with dementia. The two parents explained to their daughters that the changes in mood and thinking that Mdm Chng was experiencing could explain the changes they saw her going through, and that these changes were not their fault.

Everyone Plays Different Roles

Sarah shared how she and Joshua have talked with their daughters about the important roles they have played in caring for Mdm Chng. Over the past few years, J. and S. have shared with their parents that they felt they had not done much for their grandmother. In response, however, the two parents reminded them of how their presence at home helped Mdm Chng: they acted as “the eyes and the ears to see that […] their grandma is safe at home,” and because of this, “just [J. and S.] being around is important.”

Mdm Chng, as an older adult, has a higher fall risk, and J. and S. having a watchful eye on their grandmother at home has kept her physically safe. In addition, with the aid of digital devices, J. and S. have been able to inform their parents quickly of any updates regarding Mdm Chng when Sarah and Joshua were both not home. These were some roles that Sarah and her husband reminded their daughters they had been playing while affirming them that they had in fact been supporting their grandmother, emphasising that they should not “belittle the little that you can do.”

Sarah shared with us about how Joshua has also played an important role in caring for Mdm Chng. While balancing both work and family back in Singapore, Sarah and Joshua went through different working arrangements, where for the first three years, Joshua worked part-time, after which Sarah began to work part-time, and he, full-time. This arrangement allowed them to spend more time with Mdm Chng during their hours not spent at their jobs. In addition, Joshua has been very involved in and available for either directly caring for and spending time with Mdm Chng, or in caring for the family. He cooks for the family, ensuring all family members, including Mdm Chng, spend time having regular meals together; he also takes the time to have conversations with Mdm Chng. Crucially, Sarah and Joshua care for Mdm Chng in what she terms a care “partnership”. This coordinated and united way of caring for Mdm Chng together is an example she wants to set for her children, because with this example, “they too want to join in.”

Living Daily Routines Together

Living together with shared family routines is also important to Sarah’s family and it is a crucial way for Mdm Chng to be included in family life. Amongst other things they do together, mealtimes are important to the family. In Sarah’s own words, “wherever possible, my family will always gather together for dinner, sit together, and have conversations.” Sarah also pointed out that unlike how her mother eats regularly with the family when living with them, she used to eat alone, and only when she was hungry, when living alone. In this way, the family’s emphasis on having meals together often makes it possible for Sarah’s mother to have regular, almost daily social time with family members, and ensures that she is physically cared for with regular meals.

Mdm Chng also has scheduled programmes for different days of the week, around which the family members plan other routines with her. On days when she goes to the daycare, family members wake her up on time to get her ready for her transport to the daycare centre. Upon her return home from the centre, Joshua often helps her settle in back at home by greeting her, getting her snacks, and having a chat with her about her day.

On other days, Sarah or Joshua often spend time together with Mdm Chng with activities that she is familiar with, such as Sarah playing the guitar for her and singing her favourite songs together. Once a week, they also bring her on a routine walk down to her favourite coffee shop to have a breakfast together. With these routines, Mdm Chng has an abundant amount of time with her family members, and has a familiar, regular schedule in which she is engaged meaningfully.

In a reflective moment, Sarah shared that what she thinks brought her family back to Singapore is their desire to be able to look back at this time that they spent with Mdm Chng and not say that they wished they were able to do something back then, but rather, that they had no regrets. With this in mind, she emphasised that it is important for people to take the opportunity to spend time with those who are close to us who are diagnosed with an illness, as her family does with her mother.

A Wider Societal Culture of Caring Together

Towards the end of our interview, Sarah shared her heartfelt thoughts about what a dementia-inclusive society could look like. Modifying the often quoted saying that “it takes a village to raise a child,” she stressed that “it takes a village to care for the elderly” and for persons living with dementia. In such a “village”, there would be empathy and patience expressed for persons living with dementia. In Sarah’s vision of such a society, primary caregivers would not shoulder the burden of caring for persons living with dementia alone but would be well supported by family members. Community groups and people of different ages could also visit persons living with dementia in their homes to have meals or engage in activities together. In this way, persons living with dementia and their families would be better supported by their communities. This would be a step in the right direction towards what Sarah’s vision of a village that cares for persons living with dementia together.

The DementiaHub.SG team would like to thank Sarah for sharing so openly in our interview about her family and their journey with her mother who lives with dementia.

ABOUT THE CONTRIBUTOR

SARAH LOW

Sarah Low is a dedicated pharmacist with specialised training in geriatric care, and a keen interest in palliative care. She returned to Singapore in 2018, where she and her family assumed the role of caregivers for her mother, who was diagnosed with dementia. Despite the absence of a domestic helper, they have provided care, leveraging respite services such as dementia daycare. In addition to her clinical work, Sarah is an advocate for self-care among caregivers and shares her insights through her blog, thrivingcaregiversblog.wordpress.com.

The post Caring Together as a Family for a Person Living with Dementia appeared first on DementiaHub.SG.

The Meaning of Life: Poems by Misrudin Anwar

Admin — Fri, 24 Mar 2023 06:07:55 +0000

Misrudin Anwar (affectionately known as ‘Din’), was invited by our team at Voice of Dementia, Dementia Singapore’s newsletter, to compose three poems in Malay. Known as a ‘pantun’, the poems consist of even-numbered rhyming lines to express intricate ideas and emotions.

As of 2023, Din is 75 years of age. He was diagnosed with vascular dementia in April 2019 after suffering a stroke in August 2017. Din was previously a German language teacher and often enjoyed writing Malay poems before the stroke. He and his wife, Maya Anwar, are graduates of Voices for Hope, an empowerment programme at Dementia Singapore that aims to bring persons living with dementia and their care partners on a self-advocacy journey.

Jika merenung ke arah langit

Pada bintang pada bulan

Perasaan megah usahlah bangkit

Bongkak dan sombong engkau jauhkan

Ingatlah pada bumi

Pada rumput pada lumpur

Itulah tempat kita kan pergi

Itulah tempat jasad terkubur

Translation:

When gazing at the sky,

The stars and the moon.

Let pride pass you by,

Do not let arrogance swoon.

Remember the Earth,

the grass, the mud.

Our final resting place

when our souls depart.

Din and his granddaughter, Lydia Yasmin

Sungguh indah bulan purnama

Terang menarik di balik awan

Lydia Yasmin cucu pertama

Akalnya cerdik wajah menawan

Translation:

Just as the lovely full moon,

is shining in the sky so bright.

So is Lydia Yasmin,

My brilliant and beautiful grandchild.

Ikat jerami di pohon kelapa

Jerami dibawa ke tepi muara

Jika kami mudah terlupa

Maafkan kami pesakit demensia

Ikat jerami milik cik nyonya

Untuk dibawa ke pulau seberang

Jika kami sering bertanya

Ingatan kami sudah berkurang

Translation:

Tie up the straw under coconut trees

Straw to be sent to the river banks

If we forget easily,

Excuse us, it’s the dementia.

Tie up the straw from the nyonya

To be sent across the island

We repeat our questions

Because our memories have dampened.

This post was first published in Voice of Dementia (Vol.6, Issue 1), a newsletter by Dementia Singapore.

1. “Forget Me Not” by Thomas Ong
2. “Dementia” by Thomas Ong”
3. Dementia Through My Eyes: Undergraduates Create Art Installation on Dementia

The post The Meaning of Life: Poems by Misrudin Anwar appeared first on DementiaHub.SG.

An Open Letter to Filmmakers on Portrayals of Dementia

Peter Cher — Thu, 13 Jun 2024 03:04:25 +0000

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https://www.dementiahub.sg/wp-content/uploads/speaker/post-52213.mp3?cb=1718248003.mp3

Dementia self-advocate Emily Ong calls for sensitivity in on-screen portrayals of dementia that affirm dignity and self-worth.

The Impact of Inaccurate Portrayals of Dementia

As a person living with dementia and self-advocate, I’ve often been approached to consult on content and films produced on dementia.

In one such script for a short film I was recently consulted on, it depicts the person with dementia in a pitiful state: wandering aimlessly, unable to help an injured loved one and being ‘difficult to deal with’.

Negative depictions of dementia already abound in the current public awareness, and only serve to perpetrate the stigma of hopelessness and fear surrounding persons diagnosed with dementia.

It also disrespects and does a disservice to the very people it seeks to portray.

Despite growing interest in and awareness about dementia, it is disappointing that there remains mainstream content being produced that do more damage than good and which furthers the stigma and discrimination of the dementia community.

Responsibility of Filmmakers to Make Informed Decisions

Dementia covers a broad spectrum. While there are some who are diagnosed with rare and progressive types of dementia, many others go on to live independent lives and remain cognitively functioning for a very long time despite dementia.

There is hardly an excuse for content producers to fall back on a sensationalised account of dementia, which often focuses solely on its debilitating effects on persons with a dementia diagnosis and their families.

As content producers… there is great responsibility in carefully and sensitively considering the intent and impact that their content has on the dementia community.

More importantly, they have the responsibility to flesh out more accurate and constructive on-screen portrayals of the subject matter, more so as persons living with physical or mental conditions are often marginalised and their experiences less heard.

If I could, some questions I would ask are: Does the content you create serve to educate or increase public awareness of dementia? Does it create more empathy and understanding towards persons who may not be able to think, act and feel according to the status quo? Would you paint this kind of storyline about yourself or your loved ones?

Hope For The Future

There are many great stories yet to be told about persons living with dementia who are living their best lives, many examples of persons living not only for themselves, but accomplishing great things that give hope and support to others living with dementia.

If I had a choice, my desire is to live my life to the fullest and enjoy my remaining abilities to do things I love with my family and dear friends.

I remain hopeful that with continuing advocacy efforts on dementia, more content producers and directors will respond to the call to depict characters and stories that affirm the dignity and
self-worth of persons with dementia.

This post was first published in Voice of Dementia (Vol.5), a newsletter by Dementia Singapore

ABOUT THE WRITER

EMILY ONG

Emily Ong is a trainer, speaker, workshop facilitator, and program developer in dementia-related topics based on lived experience, academic reading and grassroot involvement. She has been a co-facilitator of Dementia Singapore Voices for Hope program since 2019. Emily was also recently elected to the Alzheimer’s Disease International (ADI) Board of Directors for the position of person with dementia. Additionally, she serves in the Global Review Panel of the ADI Accreditation Team and a focus group member of the WHO Global Dementia Observatory Knowledge Exchange.

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>> More blog posts by Emily Ong

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The Power of Love: Living & Loving Despite Dementia

Admin — Thu, 09 Mar 2023 03:46:59 +0000

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https://www.dementiahub.sg/wp-content/uploads/speaker/post-21001.mp3?cb=1679472644.mp3

We share a meal and get to know Mdm Katherine Lim and her daughters Belinda and Babara Seet, who star in Dementia Singapore (previously ADA)’s third #DespiteDementia campaign video titled “The Power of Love”. Mdm Lim, 90 years old in 2023, has been living with dementia for about 10 years and is a graduate of our self-advocacy programme, Voices for Hope.

It was a cool, overcast afternoon as the video crew gathered around the dining table in the Seet family’s house. Everyone was eagerly waiting to tuck in to the aromatic pot of golden yellow chicken curry that had been simmering on the stove for hours. Katherine, ever the consummate host, invites everyone to sit down and dig in.

Preparations for the curry had begun the day before. Watching Katherine taking charge of preparations for the dish and blending the fragrant spice mix for the curry, one could hardly guess that she has lived with dementia for close to 10 years.

Early beginnings

Katherine grew up in a large household with a Chinese father and Peranakan mother. Life growing up was comfortable, as the family was well to do and had servants, cooks and drivers to tend to the family’s needs. Her upbringing meant she spoke multiple dialects and languages, from English and Malay to Hokkien, Cantonese, Mandarin and Teochew, conversing easily with many people in their neighbourhoods and from various walks of life.

She soon married Mr Richard Seet, who was a humble teacher, and Katherine had to now get used to an independent life centering around her children and daily chores. Making the most of her well-rounded background and new skills such as being the designated driver in the family, she fetched her kids to and fro school and extra curricular activities, earning the title “the queen of the road” in the process.

Love and Sacrifice, Despite Dementia

Her diagnosis of Alzheimer’s disease in 2011 came as a shock to the close-knit family, who was also struggling to cope with their father’s cancer diagnosis in that very same year. Initially, Katherine’s diagnosis caused her to stop doing familiar things she enjoyed such as driving out to places and cooking. She became depressed and lost weight.

The crisis brought together Katherine’s four adult children – three daughters and a son – to decide how to share these new caregiving responsibilities. They embraced the belief that life is short, and it was most important to make the remaining days of their parents’ lives as happy as possible. One of the principles that Katherine believes strongly is the need for persons with dementia like herself to continue to keep their minds active and engage in activities while they still can.

Together with other Voices for Hope graduates, Katherine, Belinda and Babara went on an unforgettable trip to Taipei and met with the Taiwan Alzheimer’s Disease Association

It is this belief that her two daughters, Belinda and Babara, are determined to enable in their mother’s life. Belinda and Babara, whom Katherine endearingly dubs her ‘two angels’, made the conscious decision early on to make the sacrifices needed to keep their mother’s day-to-day life as normal and happy as possible. Belinda gave up her high-paying lecturing job, switching to part-time teaching and consulting, and also moved in with Katherine. On the weekends, Babara would step in to give Belinda some respite from caregiving. Both are counselling trained.

Katherine and Belinda at Voices for Hope

To keep their mother engaged, Belinda and Babara have devised a daily schedule of activities based on her interests. Another cognitively-stimulating activity is also working on primary school-level assessment books on English, Mathematics and Mandarin to keep Katherine’s mind sharp. They have also embraced technology, in particular the Zoom platform to speak to their peers from Voices for Hope, and to play Katherine’s favourite games on her iPad.

Despite dementia, Katherine, Belinda and Babara continue to press on, not without its challenges, but with a happy- go-lucky spirit and “come what may” attitude in life. And in times of need, the girls can still rely on Katherine for life’s simplest comforts, such as her hearty Peranakan cooking and motherly advice.

Back at the dining table, with their bubbly Thai helper in the background clattering around and preparing the cutlery, Katherine, Belinda and Babara are eager to share their meal with us and the crew, and invites everyone to put down their equipment and join the table. As the fragrant spices and rich coconut gravy scent wafts around us, so does the warmth and love of the Seet family.

Watch the #DespiteDementia video featuring Katherine, Belinda, and Barbara here:

This post was first published in Voice of Dementia (Vol.5, Issue 1), a newsletter by Dementia Singapore.

For more #DespiteDementia information on DementiaHub.SG, click here.

1. My Caregiving Journey
2. Recreational Activities
3. Designing a Daily Routine

The post The Power of Love: Living & Loving Despite Dementia appeared first on DementiaHub.SG.

Calling for the Right Support

Admin — Thu, 16 Feb 2023 09:32:20 +0000

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https://www.dementiahub.sg/wp-content/uploads/speaker/post-20480.mp3?cb=1679472649.mp3

Young-onset dementia (YOD), which is dementia that develops in persons under the age of 65, is becoming more common in Singapore. At the same time, there remains much to be done to build services that fit the unique profile, needs, and preferences of persons living with YOD. In this piece, Emily Ong, a dementia self-advocate who has YOD, highlights this issue in greater depth, calling for the right support for young-onset dementia.

There is a pressing need for timely, appropriate post-diagnostic support and interventions for persons with young-onset dementia.

While there has been a growing focus on developing community awareness of dementia in Singapore, the special needs of younger people living with dementia and their families should be properly addressed. Many existing post-diagnostic services and support systems are developed with the elderly in mind, since dementia is more prevalent in this age group. This results in services and support that may not adequately meet the specific needs of those affected by young-onset dementia.

Services and intervention have often been focused on cognitive stimulation therapy. Yet, we know that the impact of a diagnosis of dementia can cause significant family distress and social isolation, and services should address these issues too. Younger persons living with dementia and their families have a greater need for emotional, socio-psychological and relationship support, regardless of their dementia stages upon diagnosis. The sense of grief over the ‘loss of person within’ and multiple other losses can have major effects on persons with dementia and their life together as couples and family units.

It’s important to realise that generic dementia services, often designed for older cohorts, are not suitable if the nation wants to help younger persons with dementia, who are often still physically fit, maintain an active life and stay independent for as long as possible. As a person living with dementia, I would say we need post-diagnostic support and interventions that support us in engaging socially, enable us to be involved meaningfully, and empower us in a dignified manner. A diagnosis of dementia does not make an individual a lesser being. We still have the same needs, and want to continue feeling like valuable, productive, and contributing members of our family, community, and society.

An increasing number of people are diagnosed with young-onset dementia each year, and it is imperative that we consider these special needs when planning future dementia policies and implementing post-diagnostic support and interventions. Policy makers, health, and social care providers should proactively consult and engage younger persons living with dementia and their families to ensure that what is implemented is appropriate. This will leave those with young-onset dementia, and their families, better equipped to deal with changes in abilities, relationships, and roles that may arise as the condition progresses. We need more than a ‘one-off’ kind of support- ongoing guidance and support is necessary to enable them to live well and meaningfully despite dementia.

This piece was previously published in the July 2020 edition of Voice of Dementia, a newsletter by Dementia Singapore.

Since 2020, the dementia landscape in Singapore has changed: there are now post-diagnostic services by the Agency for Integrated Care and Dementia Singapore that persons living with dementia, including those with young-onset dementia, can use. In addition, Dementia Singapore has set up Dementia Social Club, a care approach in which persons living with dementia and caregivers can meet at social gatherings to receive skills training and peer support. This piece has been edited by the DementiaHub.SG team to reflect these changes.

ABOUT THE WRITER

EMILY ONG

Emily Ong is a trainer, speaker, workshop facilitator, and program developer in dementia-related topics based on lived experience, academic reading and grassroot involvement. She has been a co-facilitator of Dementia Singapore’s Voices for Hope program since 2019. Emily was also recently elected to the Alzheimer’s Disease International (ADI) Board of Directors for the position of person with dementia. Additionally, she serves in the Global Review Panel of the ADI Accreditation Team and a focus group member of the WHO Global Dementia Observatory Knowledge Exchange.

Facebook | Twitter

>> More blog posts by Emily Ong

1. What is Young-Onset Dementia?
2. Nothing About Us, Without Us: My Journey as a Dementia Advocate
3. Employment for Persons with Young-Onset Dementia

The post Calling for the Right Support appeared first on DementiaHub.SG.