Read the DAI 2021 Global Report

NEWSFLASH: DAI GLOBAL REPORT 2021

Valuing the advocacy of people with dementia: moving dementia out of the shadows

DAI is pleased to launch a new 2021 Global Report on World Alzheimer’s Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.

“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research.  However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.

Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some  of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued.”

We have added the Table of Contents as a way of quickly highlighting what is inside our publication.

Table of Contents

About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
– Involvement as a right
– Involvement which leads to better outcomes
– Involvement which brings personal benefits
Examples of International Leadership in Involvement
– UK- DEEP
– Australia- Cognitive Decline Partnership Centre (CDPC)  
– Ireland- Irish Dementia Working Group
– Scottish Dementia Working Group
– United States- Early-Stage Advisory Group
– Japan- JapanDementia Working Group
– Ontario Dementia Advisory Group (ODAG)
– European Dementia Working Group
– Alzheimers New Zealand and Alzheimers NZ Advisory Group
– Dementia Advocacy Canada (DAC)
– Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
– Appendix 1: Additional resources and practical guides on involvement
References
Endorsements

Also available to download on our website publication page.

About the author:

Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development.  This paper was completed as independent work separate to her other roles.

Ellen is currently the CEO of Down Syndrome Australia and  is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer’s Australia).  She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.

Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer’s Australia when this committee was founded.

Suggested citation:

Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.

Donate

Christine Thelker wins the 2021 recipient of the Richard Taylor Advocates Award

It is World Alzheimer’s Day, and DAI is thrilled to announce one of our Alumni Board Members, Christine Thelker from Canada is the recipient of the prestigious 2021 Richard Taylor Advocates Award.

We congratulate Christine, and also want to share some of her story, including this interview with Kate Swaffer about winning this award.

Christine Thelker receives the 2021 Richard Taylor Award

 

Finally, read why Christine was nominated by DAI member, Debbie Kaey.

Please explain why you believe Christine Thelker is a worthy candidate for the Richard Taylor Advocates Award:

First, Christine Thelker has opened a door for living with dementia that is “real”, not trying to paint an unrealistic picture of what living with dementia is like. Her relationship with the dementia community is vast and respected. She is\was an active board member, active in membership committees, action committees, host and co host, for support groups, webinars, cafe’s and special events with many dementia based and other community groups. She brings speakers to DAI for webinars, and puts together things like World Rocks Against Dementia.

Recruiting new members, she has developed one on one relationships with people living with dementia. She is not only a major promoter of DAI, she is an active Board member of DAI. Within the dementia community she is a liaison with other groups such as Dementia Advocacy Canada. Currently she works with people waiting for diagnosis until such time they are able to become members of DAI. Part of the Ed-Sig group (an environmental Dementia Special Interest Group out of Singapore) which is under the DAI umbrella. She also works with the Canadian Consortium of Neurodegenerative, Age well Canada, TREC ( Translating Research into Elder Care.

She writes for the Dementia Connections Magazine, along with several others like the Vernon Seniors Action Network ( VSAN). There are many more groups she is involved with but her love of and belief in DAI is well documented (eg: many interviews, articles as well as having written a book (eg: second one in the works).

Her support of so many has gained her much respect. She is a caring, sensitive and encouraging person, never dismissive, an empathic listener and is honest, “real” and has a gentle personality that invites you into her world, whether you have dementia or not.

Wise and discerning, she really does listen to a person’s narrative, reflecting back what they are feeling and thinking and not trying to offer personal opinion, but sage suggestions, allowing a person to walk the journey in their time.

I am honoured to know her. Her work speaks for itself and opens many doors for others, giving and not holding back anything she knows. She is very humble and I was so pleased she accepted this nomination. I hope you find in favour of this nomination.

Sincerely, Debra Anne Keay

Donate

Quotes, from one of Christine’s presentation, at the ADI conference in Chicago in 2018:

Watch the webinar – “Rehabilitation to maintain physical function”

We are pleased to share the video recording of a recent #DAI presentation, “Rehabilitation to maintain physical function”, presented by Associate Professor Michele Callisaya and Dr Morag Taylor, the first in a series of four webinars focused on Rehabilitation for Dementia, as part of our 2021 Dementia Awareness Month activities.

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI is highlighting why.

Along with thinking and memory, physical function is often compromised in people with dementia. Physical functions include balance, strength and the ability to walk well. Good physical function is important for maintaining everyday activities, whereas poor physical function increases the risk of falls. This presentation outlined the common physical disabilities found in people living with dementia, how thinking and memory influence the ability to walk safely, as well as evidence for treatments to maintain or improve physical function and prevent falls.

It is not too late to register for Webinar 3, being held in two days: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski.

Then, next week you can also register for our final webinar in this series, a Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Dr Alexandra Rauche, WHO, Mrs. Emily Ong, Ms. Lynette Rogers and Ms. Kate Swaffer, MSc.

Donate

Acceptance by Terrie Montgomery

We are more than half way through Dementia Awarness Month, and continue to share stories from people with dementia, including many DAI members. Our blog today is written by one of our newer board members, Terrie (Theresa) Montgomery, who lives in the USA.

Thank you Terrie!

Acceptance

“Where there is a will, there is a way. If there is a chance in a million that you can do something, anything, to keep what you want from ending, do it. Pry the door open or, if need be, wedge your foot in that door and keep it open.” (Pauline Kael)

It was in 2015, that I was diagnosed with Early Onset Alzheimer’s.  The first thing I had to do was being able to accept it and live with it.  So far, I have.  But when it becomes more difficult is when we are juggling multiple diagnosis.  Not only myself, but there are quite a few others living with some form of Dementia and whalla out of no where, they too are trying to stay afloat.  Some of us fall victim of being diagnosed with not only one, but two, three and more. I am part of that MORE.  That is why it is so important to have or develop a sense of humor and more importantly hold on to our Faith.

Some may say, a sense of humor?  Faith?  What will that do? Having Dementia with other diseases and ailments added to it is far from funny, humorous or welcoming. Yes, I totally agree but what can we do about it?  Simply put, we CAN be open to ACCEPTANCE.  Yes, ACCEPTANCE, which prompts us to have a game plan, a adjustable attitude and a willingness to always believe there’s is a solution.”  That is where the Faith part comes into play.

None of us is exempt from things happening to us. None of us is exempt from being diagnosed with Dementia or any other disease.  Life Happens.  Of course we ALL know that there are preventive measures we can do to reduce us from certain medical conditions and diseases but we also know that Dementia like the Coronavirus does not have a respect of person. At this current second another person has been diagnosed with Dementia and possibly another disease or ailment.

Worldwide, around 55 million people have dementia, with over 60% living in low- and middle-income countries. As the proportion of older people in the population is increasing in nearly every country, this number is expected to rise to 78 million in 2030 and 139 million in 2050. (Google latest global statistics of Dementia).

The numbers listed are quite staggering. Hence, more of us need to be able to try our best to fight, to be well informed of clinical trails.  To advocate for ourself as a patient as well as advocate for our human rights to be treated respectfully and seriously.  Speaking of being treated respectfully and seriously is applicable to others that are living with Dementia as well   It is very therapeutic to uplift others that are living with a form of Dementia.

Yes, encourage those that are in our circle to keep fighting, remain engage, continue to build up one another  and NEVER tear down one another. All of us need peer support and kindness across the board.  “Nothing About Us Without Us!” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group affected by that policy. From Wikipedia,

The reason why I am sharing this is to encourage others, that are like me as well as caretakers.  It is no joke to live with Dementia, but it is achievable.  It is no picnic for others to judge, prejudge, or make assumptions in trying to predict or give a personal assessment where a person is in their disease or mental state. That can only be evaluated by a professional neurologist or physician.  It is imperative that everyone within the circle of some one living with Dementia has ALL of their affairs in order.  That can be difficult but yet necessary.

I must admit, that I am NOT perfect or 100% ready for the unknown but I am 100% ready to enjoy each second of a brand new day! Some of us has a full plate of circumstances beyond our control and some of us have (Fill in the blank).

However, I will not allow anything or any one steal my joy and neither will it steal any one else joy if we remain focused on the good in our life. Focus on the legacy we will leave behind but most importantly focus on the now, this second, this minute, this day!  Make sure it is NOT wasted.

Instead, park our illnesses, park our Dementia, park worldly events and definitely park everything that make us sad. Grab ALL the joy, positiveness, happy thoughts, happy steps, and precious memories we are going to make today.

If I can do it….WE CAN DO IT!

Why not?  Every day is a gift ..enjoy it! We are only going to travel this route once.  Everything is in Acceptance status for today and every day!  Right now at this moment, I am feeling my finest!  It can’t get any better than that if we keep our positive attitude on track!

Acceptance keeps Everything on track…..

Theresa (Terrie) Montgomery 9/13/21
Living with Younger Onset Alzheimer’s Disease
DAI Board Member
DAA Advisory Board Member

Donate

Watch now: Updates In Precision Medicine and Protocols for Dementia

We are pleased to highlight this #DAI webinar presentation during Dementia Awareness Month, which was a recent discussion style presentation by Dr Nate Bergman was an opportunity to hear about the latest findings in Precision Medicine & Protocols for MCI & Dementia. #WAM2021 #DAM2021 #KnowDementia

Dr Nate Bergman DO, has been passionate about proactive, preventive, and participatory medicine since his days as a research fellow at the NIH. He completed a fellowship in geriatric medicine at the Cleveland Clinic with emphasis on the aging brain and body. Prior to his current position at Kemper Cognitive Wellness, he co-developed the Cleveland Clinic Center for Functional Medicine’s program for cognitive impairment.

When not in the office, he hosts and produces the Evolving Past Alzheimer’s podcast, dances, ponders the mysteries of the universe, but mostly enjoys time with his wife and their five children.

This discussion style presentation will primarily be about the latest findings in Precision Medicine & Protocols for MCI & Dementia. Dr Nate Bergman is absolutely convinced that Alzheimer’s and other brain diseases are generally treatable and reversible. Early translational evidence is supports this belief.

Dr Nate Bergman hosts the Evolving Past Alzheimer’s show, which was was born out of both personal experience and frustration with the current state of affairs in medicine. After a short stint in performance art, several years in spiritual retreat and study he embarked on a career in medicine. Nate opted to become a doctor of osteopathic medicine because of the profession’s acknowledgment of the multidimensional nature of humankind, i.e., physical and spiritual beings.

A great number of DAI members have also been convinced that a lifestyle approach, including with a focus on the arts to a diagnosis of dementia is closest they have to hope, and even if not a cure, it will improve our quality of life. This is also the reason DAI started our Brain Health Hub and twice monthly meetings, many years ago, for members and any others. Please send in questions in advance if you have them.

DONATE TO DAI TODAY

Living with Dennis and Dementia, by Tina

Today, as part of our blog series for Dementia Awareness Month, Tina Baker who is the care partner and wife of one of our members Dennis Frost shares with us what is is like, for her, living with Dennis, as well as living and supporting with Dennis, who is diagnosed with dementia.

Tina highlights the importance of not defining the person by the dementia or the disabilities casused by many symptoms of dementia, as well as some of her own challenges and highlights. Dennis also shared some of his musings with us recently.

Thank you Tina.

Living with Dennis and Dementia

By Tina Baker

Image source: Tina Baker

Dennis is for the most part pretty easy to deal with as he keeps himself busy, with projects, zoom meetings, which are on most days. He does side projects for each of these and when he is not doing these things he is out in his shed making fine detail for his model railway, or making items from wood, which he is very good at and has made several items of furniture around the house over the years

Time watching, Dennis will eat at the same time every day, and wants to go  to bed very early, and he wants me to go with him, he says he can’t sleep unless I do, unless I am away from home, but as I work shift work and some shifts I don’t finish until 8.00 pm and get home, shower it would be about 8.20 so when he says are you ready to go to bed at 8.30, of course I am not, no I say, 8.40 are you ready now? Ah still no, I have now taken on a bad habit of downing 2 glasses of red wine as fast as I can so when by the third time at 8.45 I am at least relaxed enough to go to bed, and hope that sleep will happen, especially if I am on a 6.00 am start. I wish I didn’t indulge him years ago with this then maybe it would not be an ingrained habit now.

One thing about Dennis is that his taste for food has changed and he really doesn’t like many foods he once liked, this has created a somewhat issue with what to cook, so now most dinners are now plain, although sometimes I just want to have something I want so I cook 2 different meals, but because I work shift work, I am able to cook the foods I want to eat, which works out well in this regard.  I do cook up meals that I know he likes and freeze them of in hope when I am on a late shift, that at least Dennis might eat well enough.

Dennis is very independent and so is able to look after himself in a capable way, he gets his own meals ready when I am working, he still bakes slices and muffins ect, he still drives … although since Covid this year that is limited, he can still converse on the phone.

Dementia and the after effects, this can be embarrassing at times …. It also can be a good thing. On the bad times occasions the few times that Dennis has lost his temper in a supermarket, throwing things, arguing with staff about, well anything, being threaten with the band forever… been better for a while on this”, on the good side, he has managed to get our phone bills reduced, he has argued with billers to give us a better deal, rate, he has saved us hundreds of dollars over the year/s ….

But I am his voice in the bad times; I explain why he is like this why change may make him angry … why he is not wearing a mask…. Covid has bought its on challenges …. But he Dennis has adapted to these, as long as the people don’t come on the attack…. Eg…. Do you have a mask sir … Dennis no …. Here is one you can wear…. No I have an exemption …. No problem sir ….  Instead of NO MASK NO ENTRY this will only bring on a Dennis Tantrum in my words .

What do I do for me?

Well, as it has been stated above I am still full timed employed, so my time is mostly taken up with work, but I love to walk and I am luckier  than most carers as I am able to do this … my down time from work and the daily grind, is to walk for km … around work shifts which take me to different locations … bush, the beautiful south coast, local and even the hills of Kiama.  I am also still able to go away overnight occasionally with friends to attend shows and events. I would never take this for granted, especially after reading about so many other carers, I just appreciate the time now, and hope to be prepared when the time comes for other situations

Support

Dennis has a great support team whether it is from his group of people with the disease around the world, his friends that he has locally or the extended people throughout the studies and groups he is involved in , as for me? If there is anytime I just need to vent then the Dementia cares group is a great way to do this, through this site I have learnt so much, especially on how to answer the questions that others will ask about Dementia.   As I am a health worker at a hospital, and where that hospital does have a ward just for people with Dementia, I am able to answer questions on behaviour, on how to deal and treat these people but using the experiences that I have had, I am able to tell people that Dementia is real but is nothing to fear, I am Dennis voice in many situations, but I am also the one that explains what I do know to the next generation. I have been given cards and advice over the years on where to find support if I ever do need it and as I do work in the hospital environment I think I can find a way to get support if needed, there are resources out there, and it’s just a way to find out how to access them.

Dennis has come so far with his knowledge and training in the Dementia world, he has been in many studies, involved in many ways different groups, I think his input will go on to teach many others, and I am just glad that I can be a small part in this, maybe someday there will be a cure, and everyone that is involved especially the input of the ones with Dementia  that have spoken out about their experiences will be the thing that has helped with this cure, they are should be proud of the part they have had with their voices and stories have helped so many and will help so many more because they were brave enough to speak out.  I may not like everything about this nasty disease but I do love knowing that the person I love so much may the voice that can change the world and its opinions about it …… and I have experienced so much,  because of it, I would never have thought about traveling to some of the locations I have been lucky enough to experience, I would not be as brave as I am now to speak up, to use my voice to help others understand, I would not be the person today if I did not meet Dennis, Dementia or not he has taught me so much .

Dementia is a disease but is it does not define us, those that have it and those that are close to it, but all stories connected can change the conception of it and eventually lead to a the Cure.

Tina Baker

Since you’re here, please Donate today

A song by James McKillop

James McKillop, Scotland

We are thrilled to highlight this wonderful collaboration during Dementia Awareness Month 2021, a song written by of one of our past board members, and a long time pioneer dementia advocate, James McKillop, with a musician, Gus Harrower.

James has written many songs, poems and stories since being diagnosed, and was delighted that Gus worked to produce it as a song.  #WAM2021

Thank you James and Gus!

This song was featured on the 31st August 2021, as part of the Life Changes Trust online conference ‘Community & Dementia: Creating Better Lives in Greater Glasgow and Clyde’. They started the conference with this song, written bys James McKillop, who lives with a diagnosis of dementia in Glasgow.

Donate

A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

Please donate to DAI today Donate

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

Seven years of DAI advocacy by Amy Shives

On January 1, 2021, DAI turned 7! We were delighted to host a virtual cafe to celebrate our 7th birthday, and had a number of planned and impromptu speakers. Amy Shives, one of our co-founding members, spoke about our seven years, from her perspective as a co founder and long time dementia-advocate.

We are thrilled to share it today, as part of our Dementia Awareness Month series of (almost daily) blogs, to continue to highlight the voices of poeople with dementia, as well as DAI’s critical role in local, national and global advocacy.

In this video, she talks about the value of the DAI Peer to Peer suport groups, and how important these groups have been in normalising the experience of dementia. Any also says, that she believes being with others living with dementia has  saved her life.

Thank you Amy!

Since you’re here, please donate to DAI today

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

Hello my name is Ting Fei – part 2

As we continue our series of daily activities and blogs for World Alzheimer’s Month it is important to remember that dementia effects many more people than those diagnosed, and that the financial and emotonal cost to family members and care partners is high. The World Health Organisation says:

  • Currently more than 55 million people live with dementia worldwide, and there are nearly 10 million new cases every year.
  • Dementia is currently the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.
  • Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large.

In 2018, ADI reported an estimate that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015, equating to 2,089 hours per year or 6 hours per day. This is the equivalent of more than 40 million full time workers in 2015, a figure that will increase to 65 million full time workers by 2030.

Hence at DAI, we believe it is important to share some of the personal stories of family members and care partners. They too need a voice, and today, we share part 2 of the lived experience of Dr Ting Fei Ho, from Singapore.

Hello my name is Ting Fei – part 2

Image source: Ting Fei Ho

Hello, I am Ting Fei. In 2019, I first shared about my mother who was placed in a residential aged care facility in Western Australia (WA) by her three younger children (two sons and a daughter). They were her legal guardians yet did not want the responsibility of caring for her as soon as they realized that she had dementia, despite their denial of the fact.

At the same time, my mother was on the road to recovery from her hip replacement surgery but, unfortunately, suffered a “mild” stroke while staying with her youngest son in WA.

Not long after my sharing in the September 2019 “#Hello, my name is” series, my mother passed away on 20 September 2019.

There will be no fair and just closure to my mother’s experience if I do not complete the account of my mother’s brave but futile fight to live her life with dignity and deserved quality.

Here in part two, I revisit and share the heart-breaking events of my mother’s last days in the aged care facility. Hopefully this will raise public awareness of the many ways by which a helpless elderly with impaired cognition can suffer abuse.

To recapitulate, my mother was placed in the aged care facility in mid 2016.

On admission, she was able to walk with a frame and able to independently perform basic tasks of daily living.

In less than two years, she suffered a few falls, developed deep pressure sores that did not heal for months; ended up with total immobility and fully dependent on support for her daily living. All these happened due to gross neglect and inappropriate care.

From 2016 to 2019, I travelled regularly from Singapore to visit and care for her. At the same time, I diligently strived to obtain legal approval to bring her back to Singapore where I can provide better care for her in my own home. Singapore was a second home to my mother who lived with me for several months a year before she was placed in the aged care facility.

Fast forward to September 2019, about 10 days before my mother’s death, I was informed through a brief email from her guardian that she was admitted to hospital for inability to eat or swallow. I made urgent arrangements to visit my mother to find out more about her condition.

Below is a list of horrific events during the 10 days before my mother’s death:

  • When I arrived I was shocked to find my mother hardly able to respond or communicate. She was staring up at the ceiling with glazed eyes, had very dry mouth and tongue, and she was struggling to breathe. The same general practitioner (GP) who looked after her at the aged care facility had ordered NIL by mouth a few days ago after her discharge from the hospital. Hence she was not given any fluid or nutrition for several days before my arrival. Basically, my mother was being left in bed to wait for death.
  • I used a wet sponge to wet my mother’s mouth in order for her to feel more comfortable. She clung onto the sponge, thirstily sucking the fluid. I then asked the GP whether I was allowed to give my mother some fluid this way. He said that she must first be assessed by a speech therapist. So that evening my mother was sent to the hospital again. After waiting all night on a trolley at ER, I was told that nothing more could be done and it was best to send her to a hospice care.
  • The same advice for hospice care was earlier prescribed by the doctor at the hospital during my mother’s first admission. But this advice was ignored and I was not aware of the hospital doctor’s earlier advice. I tried my best to contact various hospice facilities but they were all full except for the Bethesda Hospital Hospice Care. They promised to send someone down in the next morning to assess my mother. This hospice team and their efficient professionalism was the only ray of sunshine for my mother during the bleak last days of her misery.
  • When I saw my mother in so much distress, I asked whether she could be given some nasal oxygen to ease her laborious breathing. The aged care manager came and, without even stepping into the room to see my mother, stood outside the door and told me that my mother was not in distress hence nasal oxygen was not necessary. My heart sank at such an uncaring and heartless attitude.
  • Thankfully the hospice team did not take too long to arrive. They skillfully assessed my mother and promptly ordered nasal oxygen for her as well as a low dose medication to ease her breathing. They also advised me that my mother was too ill to be able to endure any transfer to the hospice care hospital. So under the supervision of the hospice team, my mother was given the prescribed oxygen and medication. Soon she was noticeably more comfortable and her breathing was quieter and relaxed.
  • By then I had also arranged for 24-hour private nursing care for my mother. The aged care staff tried to deter me and told me to get permission from the guardians. But I told them that it was a crisis and, in the absence of the guardians, I would decide and pay for all nursing and medical fees for my mother’s hospice care.
  • During these last days, none of the guardians were attending to my mother. They also did not follow up on the initial advice by hospital doctors to provide hospice care for my mother.
  • When all necessary care was finally arranged, I instructed the private nurse to monitor and record the vital signs of my mother and to regularly hold her hand, gently stroke it and talk to her. I observed that such physical contact and gentle speech were very reassuring and comforting for my mother.

When I bade farewell to my mother I knew I would never see her again. Indeed, within 24 hours after I left my mother, she gave up her spirit to the Lord and returned to her eternal home to be united with my father.

The sons, for whom she kept her eyes opened, waiting to see them for the last time, never appeared.

During my mother’s final days the abuse continued. She was deliberately denied hospice care and intentionally left to die a tormented death with starvation and dehydration. Thankfully, my intervention in bringing hospice care and personal attention to her brought some relief, calm and peace to her soul.

My mother’s misery lays bare two important lessons for us:

  • We must reinforce the calls to protect the vulnerable, guard their dignity and provide legal recourse to better defend their rights.
  • We should never assume that legal guardians and trained aged care personnel will always act in the best interest of the elderly person whom they are legally entrusted to care and protect.

I believe my mother’s suffering will not be in vain. Justice will and must prevail.

DONATE to DAI today