Stories waiting to be told

Why we need to open our hearts & listen to the people we care for

I wanted to share this beautiful video of Raelene and Soo Ren, who opened their hearts poured out their life story in this short 11-minute film. Raelene touches on the challenges in their life of being an inter-racial couple in the UK, their life settling down in Singapore in a house with 30 members of the family and later as a caregiver for her husband who is living with cognitive impairment. No matter the challenges both Raelene and Soo Ren continue to move forward in life, sharing every day together.

I also apologise for not blogging as much and not having any new articles of late. I’m currently 29 weeks pregnant and soon to start a new chapter our lives with a baby boy. In a way, Raelene and Soo Ren’s story strikes a deep chord in my heart because much like them, me and my husband are an interracial couple as well, with me being an Asian and my Husband being a Caucasian. We do face similar stigmas but possibly not those as aggressive as what Raelene and Soo Ren had experienced in the 60s and 70s. I do ponder the needs and the types of assistance that an interracial couple may require in the areas of dementia care, be it bilingual literature on dementia, or even training especially for expatriates and immigrants, hearing their stories. Most of us will become aware of the cultural differences that both will have to overcome to be together and as cognitive impairment and dementia sets in, can we say that we can we deliver care services that can meet the needs of interracial couples? Is there more that we can do?

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On top of the discussions on inter-racial couples, it is also important to recognise that everyone, everyone that you see has a story. As a nurse and a personal care assistant, I have heard of stories of women who worked in the times of war in the UK, wearing their hair in “victory rolls” and working on machines, the life of a submariner and the experiences of a WW2 Vet. There was a lady who took 7 months to sail from Australia to the UK, which to me was an incredible feat in itself. A man who knew more about the history of Singapore than I did, having visited Singapore in the 70s and 80s. A lady who thought me that when it comes to fashion quality far surpasses quantity, pulling out a teal dress she bought 20 years ago for a wedding that continued to look stunning on her at 80. A teacher who taught me all about baking and I’ll never forget five women who agreed in unison that a home cooked meal was the heart and gut of marriage. They opened their heart, they brought me smiles and laughter, sharing with me their adventures, their lives and their memories. I’m here to provide care, and yet it feels like they are providing me with the knowledge and care that I need to mature and grow, learning from their experiences and their stories, nourishing my mind and my soul, an experience that no money can ever buy.

12 top tips in caring for people with dementia

A big thank you to the Dementia Behaviour Management Advisory Service team (DBMAS)! I’ve always found this very helpful working with residents with dementia. I hope you will find this helpful too. For the PDF version please click here  and to visit the Australian Dementia Behaviour Management Advisory Service website click here.

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Caregiver Tips

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A beautiful quote by Leo Buscaglia

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Dementia, prevention & our children

There are 23 million people living with dementia in the Asia Pacific Region in 2015, costing the region a whopping US$185 billion. Little education exists on dementia for our children aside from countries such Australia, Japan, with some children attaining information in countries such as Korea, Singapore, Taiwan and China. However, there is nothing in the national curriculums to prepare children for Dementia or help children to fully understand  the need of dementia inclusive enabling communities or the preventative measures required for them to put in place at a young age to reduce their risk of dementia especially those brought about by lifestyle factors.

Ireland with slightly less than half the number of people living with dementia at approximately 20,000 people, and a population of 1.8 million and a land mass of 14,130 km2. Alzheimer’s Society reported that at least 30% of the young will know a person living with dementia. Last Wednesday it was announced on the Alzheimer’s Society website that Alzheimer’s Society and the Council for the Curriculum, Examinations and Assessment have included dementia in the school syllabus, making Northern Ireland the first to have a dementia friendly generation.

The resources are also available not just in English but also in the Irish language. Click here to view resources.

PRIMARY SCHOOL: The Archie Project from Reminiscence Learning has created a unique and innovative intergenerational awareness project to reduce the stigma associated with dementia. They believe that by engaging with young children they are dispelling the fear of dementia and changing the attitudes of our workforce for the future, providing education to support early diagnosis. Archie’s Story follows a scarecrow with dementia on his journey from exclusion to inclusion. The accompanying Archie workbook goes on to help children understand how Archie’s state of wellbeing improves by being understood, loved and included — a simple concept but one that both children and adults can relate to. The Archie Project provide books, workbooks, assemblies, scarecrow parades, Archie-related activities, training, drama and recognisable merchandise so that everyone can connect with the Archie character and learn how to engage with people with dementia in their families and communities. Links between schools and care homes enable children to put their new dementia awareness into practice. By increasing their knowledge of dementia, the project gives them confidence to interact with residents during visits to local care homes, where they take part in shared activities such as singing, gardening activities, coffee mornings, shared lunches, snooker, craft activities, tea dances and storytelling. Archie mascots encourage conversation and engagement with people at all stages of dementia. For more information visit www.reminiscencelearning.co.uk/archie (Source Alz Soc Youtube)

The promotion of dementia awareness not only helps us to create a better multi-generational dementia inclusive society but for our children, it will help them better understand the need for education and the impacts of negative lifestyle choices. A study based on a Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 published in JAMA internal Medicine on the 21st November indicated that education appears to be a protector against dementia. Dr Kenneth Langa theorises that education “actually creates more, and more complicated, connections between the nerve cells so that you’re able to keep thinking normally later into life.”

In addition, Director of the Division of Behavioral and Social Research in the National Institute on Aging, John Haaga adds that “Education can not only change the brain, it can change your whole life… It affects what kind of work you do, of course. It also affects who your friends are, who you’re married to, whether you’re married. All aspects of life are affected by educational attainment.”

When children learn about dementia and the brain, they will also learn about the risk factors which will help them to adhere to healthier lifestyle choices. According to Dr Alina Cohen, “factors such as adhering to a healthy lifestyle including a diet that is rich in essential nutrients, regular exercise engagement, and having an adequate cardiovascular profile all seem to be effective ways by which to preserve cognitive function and delay cognitive decline.” This study by York University presented evidence that the delay of dementia is connected with healthy living which in turn aids higher brain function. On a whole, our children will understand the importance of education, strategies to building cognitive resilience and understand the need for a healthy lifestyle for a healthy brain. There are a whole lot more pros than cons in this picture and policy makers should really sit up and start using their brains to look at how this can be implemented. Students will be able to understand the effects of stress on the brain, the importance of prevention and help-seeking behaviours especially in the areas of anxiety and depression. On a systemic level, this will create not only a friendlier, integrated and healthier multi-generational society but one that in the future may potentially see a reduction in healthcare spending as a result of unhealthy lifestyle choices.

SECONDARY SCHOOL: In the summer of 2012, Stoke Damerel Community College was invited to become one of 21 Pioneer Schools as part of the Prime Minister’s Challenge on Dementia. The school took a unique approach to dementia education, placing it across the curriculum into as many subjects as possible and endeavouring to work in partnership with their community and local and national organisations. They placed emphasis on creative processes and outcomes, intergenerational contact and active learning. Subject leaders were actively engaged in determining the shape of dementia education in their own subjects. Some of the most successful projects at the school were those that involved creative ways of working and intergenerational activities. For example, as part of the PE curriculum, people with dementia visited the school to play croquet with year 7 students. For more information visit http://www.sdcc.net (Source Alz Soc Youtube)

In addition to Primary and Secondary school, Scout groups have also joined the cause On such program is A Million Hands a program that supports 4 main social issues, dementia being one of the four that have been selected by the young. The objective is to empower and enable the young and the youths to tackle these issues head on and have the courage to make a change. In the areas of dementia, Scouts may find themselves helping people with dementia to fight isolation or helping with awareness by teaching people to spot signs and symptoms of dementia.They may work to try and work to make communities more accessible and even work to campaign for a cure and improve the lives of people with dementia.

Dementia as part of the educational curriculum could well be a means to improve not just the future of our children but perhaps the society as a whole.

10 ways to love your brain

A quick and easy infographic that provides sound advice from Alzheimer’s Association (USA) on what you can do to love your brain! 😀

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Death and dying, life and living in long-term care facilities in Singapore

Building a dignified system where Singaporeans can choose how we want to live and how we want to say goodbye

The loss of freedom, dignity and respect in places with 11 to 25 bedded wards, lacking in privacy, with staff being paid SGD$350 a month without food and accommodation were reported in a Channel NewsAsia program known as Talking Point. In addition, it was also mentioned by author and research Ms Radha Basu one staff member can be observed responsible for 20 to 32 residents in the night, and residents live with bare necessities such as a toothbrush, bed and a cabinet. The lifestyle was found to be highly regimented with the journalist sharing that there are were only 2 options for times for showers at 6 am or 7 am.  “it was like a hospital for the rest of your life” stated television host Anita Kapoor. She also states that “it’s not a criticism of the facilities themselves, it’s a criticism of the system. You cannot approach eldercare the way you approach hospital visits. It can’t just be a means to an end need. It is a life. You have to think in terms of life and end of life.”

I was really exhausted by the environment  

– television host, Anita Kapoor, 45 years of age.

I applaud Ms Kapoor for taking a stand and putting herself in the resident’s place, experiencing the environment literally for a fortnight first hand, living as residents lived.

Like my previous article about Singapore nursing homes, our story of the wooden bowl? I questioned how we want to care for our older adults, our parents, our grandparents, given the state of the nursing homes in Singapore. How do we care for our loved ones in Singapore with dementia without dementia enabling built environments?

My thoughts have constantly been being echoed in this programme. Pushing for better environments for people with dementia. I dare to say that I can dream for a day when Singapore will be able to have facilities that advocate for independence, dignity and respect for residents. Seeing an assisted living facility in the heart of Bukit Timah, it’s heartwarming and inspiring to see the St Bernadette Lifestyle village, assisted living facility that is just like a home.

It is with a flicker of hope that one day we can have facilities like intergenerational nursing homes inspired from our HDB designs (Taking a leaf from HDB flats for Pocket Gardens & Intergenerational Nursing Homes) which we call home.

In the meantime, I will keep working on a dementia enabling environmental audit tool for Singapore in the hope that we will be able to create dementia enabling long-term care facilities that Singaporeans can call home.

Watch the full episode here http://video.toggle.sg/en/series/talking-point-2016/ep24/458260