Category Archives: Dementia Alliance International

October Webinar: Assistance Dogs for Dementia

 

 

 

Please join us for DAI’s “Meeting Of The Minds” Webinar, on October 23/24 2019: Assistance Dogs for Dementia.

Presenters:  Professor Kevin McVilly and Phil Hazel


  • Wednesday, Octoer 23, 2019 (USA/CA/UK/EU)
  • Thursday, October 246, 2019 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Registere here…

About the Webinar:

Kevin McVilly: Assistance Dogs for people with Young Onset Dementia; 3-year study –  This project documented the experience of 14 people with Young Onset Dementia and their families, over a 3-year period, of having a trained assistance dog.  The project was conducted as a partnership between Vision Australia (which trained the dogs), Dementia Australia (which supported the participants), and the University of Melbourne. We found: (1) people reported being more confident to stay at home on their own, or to go out for short walks on their own and family members felt confident to support this new found independence; (2) people engaged in exercise and physical activity, through games, walks and excursions that they might not have otherwise done prior to having the dog; (3) people reported regaining a sense of responsibility, purpose, and pride through the need to look after the daily needs of their dog; (4) people reported that the care of their dog provided opportunities to focus on issues ‘outside of themselves’, and their health; and (5) people developed new friendships and involvement in activities with others who had a dementia assistance dog, with the dog emerging as a common (non-clinically related) interest not previously available to them.
Phil Hazell: Living with Sarah: the value of assistance dogs for people with dementia; Phil will share his story of being diagnosed with younger onset dementia, and the value of having an assistance dog. His presentation will consider the benefits such as increased Self Esteem, Purpose in Life, Independence, Freedom and importantly, increased quality of life and well-being. Phil discusses some of the cha;lenges, or what he calls a ‘reality check for those considering an assistance dog, and the joys. Sarah also assists with increased organisational skills, more independence from family, friends, work place, self pride, happiness  and reduced personal and family stress. Phil’s assistance dog Sarah actively assists with tasks including:

1.Finding articles around the house such as keys, wallets, phones, TV remotes…
2.Keeps you calm in Public Transport such as Taxis, Trains, Ferry’s, Commercial flights….
3.Take you home when lost (Short Distance)
4.Identifiying you as some one that may need help
About Kevin: Keith R. McVilly is a Psychologist and the Foundation Professorial Fellow for Disability & Inclusion, in the School of Social & Political Sciences at the University of Melbourne. His work addresses the translation of research into policy and practice, with a focus on promoting the well-being and community inclusion of people with multiple and complex disabling experiences. His work reflects the centrality of relationships to well-being. Much of Keith’s research is conducted in applied settings, working directly with people with disability, families and services providers. Keith has worked as a direct support worker, a clinician and service manager, in public health services and in private practice. In Australia, Keith has previously worked as a researcher at the University of Sydney, RMIT University, and at Deakin University.  In the UK he worked at the University of Wales’ Welsh Centre for Learning Disabilities, and in the USA at the University of Minnesota’s Research Centre on Community Living.  In his spare time, Keith is a Registered Apiarist, with four bee hives in the back yard. He also keeps chickens and enjoys spending time in his greenhouse!
About Phil: Phil is a busy and enthusiastic Advocate for Dementia Australia and one of the first to be partnered with an Assistance Dog. Phil is Chair of the Dementia Australia Advisory Committee and participates in research projects. He has spoken at numerous forums and events and has actively represented people with dementia in media interviews, focus groups, program development and research projects. Phil has travelled extensively presenting at Low Vision Conferences in Japan, New Zealand, United States and Thailand. His major subject was Electronic Magnification for those living with Macular Degeneration.

Wednesday, October 23, 2019 (USA/CA/UK/EU):

  • 10:30 am  Honolulu
  • 1:30 pm    Pacific
  • 2:30 pm    Mountain
  • 3:30 pm    Central
  • 4:30 pm    Eastern
  • 9:30 pm  London/Glasgow/Dublin UK
  • 10:30 pm  Paris, Munich, Amsterdam, EU

Thursday, October 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 6:30 am    Brisbane, AU
  • 7:00 am    Adelaide AU
  • 7:30 am    Sydney/Melbourne/Canberra/Tasmania AU
  • 5:00 am    Perth AU/Taipei//Beijing
  • 9:30 am    Auckland, NZ

The Webinar runs for 1.5 hours.  Check your time if not listed above with this link. 


COST TO ATTEND: 

  • DAI Members/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

Register here…


PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

2019 Richard Taylor Advocates Award goes to James McKillop

James McKillop receiving the Richard Taylor Advocates Award at our online Cafe Le Brain

It is with great pleasure that we award James McKillop MBE from Glasgow, Scotland the 2019 Richard Taylor Memorial Advocates Award.

Although we made this announcement personally to James during our online Cafe Le Brain earlier this week, we are pleased to announce it officially today, on World Alzheimer’s Day.

James has been a Pioneer dementia advocate, having been diagosed himself with dementia in the last Century!

DAI is indeed honoured and privileged to work and walk beside him, and our members find him a constant inspiration. He motivates us all to keep going, and is always a source of great wisdom and wonderful Scottish humour.

Since joining DAI, James  has continued his work locally and nationally, as well as being a very active DAI member on occasions representing us internationally, travelling with his dear wife, Maureen. James became a DAI board member some years ago, and continues to co host  the UK peer to peer support group on a Monday morning, which now also meets on Thursdays.

Congratulations from us all James.

Thank you for all that you have done, and continue to do.

 

#Hello from the late Richard Taylor PhD

Continuing our World Alzheimer’s Month #Hello blog series, we hear from one of our remarkable founders, the late Dr Richard Taylor, by highlighting one of his presentations given at the ADI confenence in Puerto Rico in 2014, just a few moths after we launched DAI.

It is also the year we are celebrating our 5th birthday, and listening to Richard speak on the topic of not acting or looking like we have dementia continues to be a global concern.

He continues to be missed by so many…

Not Acting The Way That’s Expected, by the late Dr Richard Taylor

https://youtu.be/CvnFTR22pgw

#Hello, my name is Cheryl Day

As we move into the second half of September, DAI continues to share #Hello stories from our members.

Please join us in celebrating life, and working towards a world where people with dementia and their families receive  improved diagnosis experiences and rates, and better care which includes rehabilitation. Of course we all want a cure or a disease modifying drug for even one type or cause of dementia, but the more than 50 million people currently living with dementia and their families also deserve the better care.

Special thanks to Cheryl Day for sharing her story with us today.

Image source: Cheryl Day

Hello My Name is Cheryl Day. 

Working cross culturally in Africa has many challenges and joys. Since 2009 I had been volunteering for SIM (Serving in Mission) in Ethiopia and Zimbabwe as a Horticulturalist (training farmers in conservation agriculture & food security) and a Pastor. I can tell you lots of stories of my adventures.

The joys were many, like opportunity to build new relationships, friendships, making a difference in peoples lives and the impact they had on my own life. Challenges like learning new languages and cultural cues, almost ending up in jail in Ethiopia, living standards and resource availability way different to Australia, and having two very serious back injuries while there. I thought this was about as challenging as my life could be.

While in Zimbabwe, October 2016, I had some unusual health symptoms that I couldn’t make out. In January 2017 I had the regular tests in South Africa for previous health issues, but the tests showed all was fine, but I knew that something was wrong. At the same time my issues started my sister was diagnosed with AML Leukemia back home. I eventually made a trip home in March 2017 to spend time with her and family.

While home I took advantage of better medical facilities to begin investigating my own health issues. At first, they thought my symptoms matched Multiple Sclerosis (MS). There was also a thought that there may be two major conditions happening at once. However, with no certain diagnosis I was given a clearance to return to Zimbabwe and continue the vital work there.

To cut a long story short after returning back to Australia the end of 2017 I finally got an official full diagnosis in May 2018 as test results showed a further decline from 12 months pervious.

Absolutely shattered at the prognosis of a growing list of health conditions and told to get all my affairs in order.

At 51 years old I was diagnosed with a rare condition – the semantic variant of Primary Progressive Aphasia. Plus issues from a Chiari Malformation of the brain, osteoporosis, recovering from a fall in Zimbabwe September 2017 where I had shattered 3 vertebrae in my back (a miracle I didn’t come home in a wheel Chair), and issues from the previous 2013 back injury.

Devastated knowing that this would be the final straw to end a goal of volunteering in Africa long term. (by the way I did get back to Zimbabwe to say goodbye in Sept/Oct 2018). I cried more than I had ever before, felt totally defeated, this was the end of my missionary adventures, the ability to enjoy life and continue to contribute into the lives of others.

One day I was listening to the radio and they were interviewing a lady named Kate Swaffer and her journey with dementia. Of course, my ears pricked up given my current circumstances and I listened intently to the interview.

I grabbed my computer and googled Dementia Alliance International. Becoming involved with DAI and connecting with Kate was the breakthrough I had been praying for and haven’t looked back since.

From the beginning of 2019 the support groups, the informative webinars, the friendships I’m making, the realisation of knowing I’m not alone in this, the opportunity to volunteer and help in advocacy for dementia are lifesaving.

A new focus, new life and new possibilities.

I am learning what I have read in the Bible so many times about living one day at a time and not worrying about tomorrow. I am still capable of many things, have a lot to offer and my passion of empowering people continues, just with a different perspective.

Cheryl Day © 2019

Please help us support more people like Cheryl living with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello from one young carer

On Day 16 of World Alzheimer’s Day #WAM2019 we highlight the story of one young care partner whose mother had young onset dementia.

It is important we are remember that children of a parent living with younger onset dementia are too often the invisible care partners and are not adequately recognised by health care providers, if at all.

An Australian researcher, Karen Hutchinson was researching the impact of dementia on young adults and children. Her work identified four common experiences of young people living with a parent with younger onset dementia, which included the emotional toll of caring, keeping the family together, grief and loss and psychological distress.

This is one young care partners story, first published in Karen’s research, then republished with permission in Diagnosed with Alzheimer’s or another dementia: A practical guide to what’s next for people living with dementia, their families and care partners [1]

As an only child of a single parent X recalls seeing changes in his mum from about 8 years old. He lived in a small community where someone labeled his mum, at 42 years old, as a drug addict when they noticed some changes in her. Subsequently X was no longer able to have friends over to his house. He did not know what was happening to his mum, which he found hard as he could not explain to others what it was.

He was very protective of his mum and recalls how his friend pointed out to him when he was 11 that he was doing things that a parent normally did. Unknown to him he had started gradually to do things that his mum used to do. It was many years later before he knew her diagnosis of dementia.

When X was about 13 he hung with the ‘wrong crowd’ and did not attend school regularly. He was sleeping rough at nights to get away from home and drinking alcohol. He knew this was wrong but he needed to escape from his unpredictable home life. There were no boundaries placed on him so he was free to do whatever he wanted. His family and mum’s friends no longer visited so basically they were left alone.

They moved to a different area where X was soon labeled a ‘trouble-maker’ by the first school he attended. He then transferred to another school and it was there that finally a teacher took an interest in him but the fear of being separated from his mum made him stop disclosing what was happening at home. He recalls having some challenging times at school and felt he did not have much in common with his peers.

Thanks to a supportive teacher he remained at school until year 12 and this provided him with some ‘stability’ in his life. He did want to go to university but knew this was not going to happen and felt a real sadness about this. A supportive teacher helped him through this time and gave him hope for the future.

They faced financial hardship as there was no money for food and bills so he had to juggle school, paid work and caring for his mother. This eventually took its toll after leaving school where he ‘reached a crisis point’, he needed to escape and be like his friends free to leave home.

On reflection he felt he may have been depressed but his focus was on looking after his mum and felt there was no help for him except escape to the pub more frequently. He recalls the time when he finally asked for some help, a family member told him that it costs money and he wouldn’t be able to afford it, so he did not look into it further at this time.

His crisis worsened and he moved interstate as he wasn¹t coping but he organised his extended family to look after his mum before he left. He noted that very soon after his leaving community services were organised to support his mum. He felt lots of guilt but contacted and visited his mother frequently until he eventually returned home feeling stronger in himself to take over her care again. He felt no one could care for his mum as well as him because he loved her.

This complex and challenging situation continued whilst juggling paid work and his demanding caring role. Finally with the added benefit of maturity he realised that services and care for his mum was something they were entitled to and not just someone doing them a favour. With this new insight he felt more confident and empowered to get the help they needed. He now recognised himself as a carer and obtained financial support and gained legal advice with regards to managing his mum’s financial affairs. He recognised too that he needed a plan for the future. After many frustrating months navigating the complex process of arranging a suitable nursing home placement for his mother, he was successful. He reflected that ‘you shouldn’t have to jump through hoops to get it (services and residential care).

When his mum finally was accepted into a nursing home he remembers this time as a particularly emotional and difficult period where he felt he had failed her. He thought his life was spinning out of control but he knew it was time to be her son again. He was able to spend quality time with his mum without all the responsibilities and also finally start to sort out his own life.

‘I think having someone to talk to who knew about what was going on, would have made things better for me too. Because I just felt really alone. ‘Didn’t feel like I could talk to anyone about that stuff’ he reflected.

Stories in Karen’s research, and from DAI members reflect this is experienced by many young people in a similar situation to this young man.

You can also read the article by Karen Hutchinson, Chris Roberts and Susan Kurrle in the Australian Journal of Dementia Care, Invisible carers: Young People Caring for People With Dementia.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

 

[1] Swaffer, K & Low, LF. (2016). “Diagnosed with Alzheimer’s or another dementia: A practical guide for what’s next for people with dementia, their families and care partners”, New Holland Publishers: Sydney, pp 253-254.

 

 

DAI supports StepUp for Dementia Research

Media release

#Wam2019 Day 13

 

Like many other countries now, Australia has now launched a platform to connect researchers with people with dementia and their care partners or families, to increase opporunities for research about dementia.

Dementia Alliance International is proud to become an Organisational Champion with StepUp for Dementia Research.

StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals – both with and without dementia – with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure. We make it easier for the brightest minds in research to connect with people willing to donate their time.

Currently, there is no systematic and inclusive way in Australia for people with dementia to express their interest in participating in research. For researchers, recruiting participants for dementia-related studies is costly and time consuming. Delays in finding the right people can result in studies taking longer to deliver, often requiring funding extensions. Insufficient study samples limit the effectiveness and scope of research – the difficulty researchers face when it comes to recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.

The initial launch of StepUp for Dementia Research will cover New South Wales and Western Australia, ahead of nation-wide scaling in the coming year.

Register here for our next Webinar to learn more about StepUp for Dementia Research.

#Hello, my name is Kate

Another #DAI #Hello story, this time from DAI co founder, Kate Swaffer.

Hello, my name is Kate Swaffer. I am the current Chair and one of eight co founders of Dementia Alliance International (DAI). I received a diagnosis of the semantic variant of Primary Progressive Aphasia just over 11 years ago at the age  of 49, although at the time I was told it was Sementia Dementia when first diagnosed.

The first 12-18 months were spent in fear and even thoughts of suicide. I cried for weeks, expecting the worst. My whole family loss hope for our future together.

Why? Well, not one person, including health care professionals told us there was still a good life to live, even with dementia.

Then through Dr Google, I met the late Dr Richard Taylor online, and first through his writings and then chatting via email and google hangouts,  I then started to realised my life could go on. I used to tell him often, he saved my life!

The other life saving thing that happened, was being at university as they simply saw me as a person with acquired disabilities, and supportd be via their Disability Services to continue to live my life!  This link takes you to an article I wrote about dementia, rights and disability.

Studying for me was a hobby, so it was meaningful, and fun. It also has the benefits of neuroplasticity, for which there is growing evidence for its value in terms of rewiring our brains.

Then, and now, most people have the very wrong misperception that a person diagnosed with dementia goes from diagnosis, almost immediately to end stage, almost overnight, even many of the health care professionals.

It may be at an unconscious level, but most people who are newly diagnosed are still being Prescribed Disengagement®, also a reason that keeps me motivated to contiue to be an activist for changing what happenes at the time of diagnosis, and campaigning for rehabilitation and other disability support for us all.

At best, we are told to get acquainted with community or aged care services, and to get our end of life affaris in order. We  rarely receive referrals to disability services, or other allied health professionals such as speech pathologists to suppot language and communication disabilities.

This lack of post diagnostic support is a major breach of o ur most basic human rights.

I’ve written books and many articles since being diagnosed with dementia over the years, and continue to do so, as well as being very involved in research about improving the experience of diagnosis and quality of life for all people with dementia.  I’m deeply grateful that Richard Taylor wrote and recorded a beautiful review of my first book, What the hell happened to my Brain: Livng beyond dementia.

My passion and goal is to empower people with dementia to live more positively and more independently with dementia, for as long as possible, rather than  to only go home and prepare to die via aged care. The other is to find a way for us all to work together globally, to advocate for global change.

Kate Swaffer © 2019

Note: Whilst many people know me, there are also many new DAI members who may not.  Hence, why I am saying #hello.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Valerie Schache

Special thanks to DAI member, Valerie Schache for saying #Hello today, the continuing blog series we are publishing for Dementia Awareness Month/World Alzheimers Month. #WAM2019

Image source: Valerie Schache

Hello my name is Valerie Schache (Val). I’m 67 and I live near Ballina NSW Australia. I have dementia and I continue as the long term care partner for my husband with complex needs since 2004 . I was diagnosed August 2015 when I was 63. I was not supported, just given a dementia drug and ‘bye’. I’m still not tagged; I don’t fit the requirements for NeuRa Frontier etc and am left to my own devices to find a way through the minefield of deficits.

My paid skills were as acupuncturist physiotherapist including complex pain in de-mentia aged care. I’m also a life time farmer. I thank my country upbringing and wise parents who included me in ‘Why is this so’ type of discoveries. I have massive cognitive reserves to cope with the diverse defi-cits says my neuropsychologist assessors. We pioneered in farming and I in allied health and I now pioneer best health practices in the dementia space. 

I Thank God for DAI [Dementia Alliance International]. I was unravelling – not supported – not being believed; stigmatized and isolated to near oblivion and self harm.

My first DAI zoom in 2016, with a mob of diverse people globally with dementia—I laughed for the first time post diagnosis as I participated; I didn’t have to pretend in this group. I was encouraged to seek the latest ideas and I improved cognitively with the Bredesen type protocol. I then got angry that the ‘establishment’ weren’t right, that nothing could change a dementia journey. I became motivated enough to give back and educate for inclusion of my dementia disability—my human right; for suitable rehabilitation to keep me well and kindness. I have pre-sented globally nationally and now locally. Facebook has been my ‘work’ pre-dementia so I now also have an active group ‘Val’s journey –dementia is a word not a sentence’ and comment often on other sites. I am gifted at reading research papers and gleaning the nuggets of change for the better from diverse sources. 

Advantages of dementia: yes, there are some.

I’ve found who my handful of friends really are. My personality type changing deficits means I’m now stronger minded. opinionated; my language is colorful, pithy and sometimes to the point. My ‘bull-shit’ meter is accentuated and I certainly won’t be patronised or treated as less because I have a neurodegenerative disease. I tackle things from the front foot.

Yes I can only now do one thing at a time– but then so do most men. Passionate, fearless bold as a hyena I help tackle issues especially if injustice is involved. I can still read a scientific paper of any genre and give you back six points in plain speak to any audience. My considerable savant knowledge is exposed and I’m well read. 

Disadvantages of dementia: yes!

In my ‘bestment’s’ words ‘It’s a pain in the ‘butt’ —I want my old Val back’ – it wont happen this side of eternity but I’m committed to her and we support each other and its ongoing. We are a great team. I struggle to be OK with the flamboyant new me. I have constant grief as I have brain ‘rat gnaws’ and I wonder what’s gone this time and can I get around it!

I hate having disturbed bodily functions; to always be reminded to remember what I need to take especially if I am distracted. I hate needing to pace myself, and accepting increasing support from others.

To be told ‘you don’t look like you have dementia’ – deep breathe Val– that is such an insulting reflex comment—one you would not say to someone with diabetes etc.

I have a DNR bracelet and all our legal affairs are in order so I don’t have to think about that part of the future except with joy at going home. 

I know dementia’s for over fifty years, observation and then worked as an acupuncturist physio for 32 yrs; a decade in a locked dementia ward and since 2005 have supported dozens of friends to die with dementia. But I say dementia should be rare—not an epidemic. 

What’s changed since the 1950’s?

Lets consider plastics, diesel fumes, atomic bombs, margarines and cholesterol issues/reduction and less sleep /increased stress and now obesity. It’s onset can be slowed even preventable with diet, BP/ Weight control. I say ‘If great grandma wont recognize it , its not food’ e.g. margarines. Hundreds of us in dozens of countries are creating a quiet revolution of change- confounding the ‘experts’ by reversing /slowing dementia– bringing hope to those able to follow a personalized precise protocol.

Back to basics of having health gut biomes for a healthy brain. Removing allergens including foods and environmental toxins especially mold. Team Val use hair analysis blood tests supplements and other hands on best practice to improve me holistically. Being mindful, stress controlled, sleeping soundly, very kind to yourself and at peace with those around you. Live in the moment as it is your pre-sent. I have hope, I have significantly improved in many markers since 2015 and I have dementia. 

Final words…

Its not the future I would have chosen, but we are making the best of this deal and giving back . We laugh and love freely. I aim to ease the life of all the other thousands pre and post dementia diagnosed. I’ve always smashed ‘glass ceilings’ so I’m breaking down the myths /assumptions about de-mentia, boldly and in every avenue presented to, or created by me. 

Don’t be like dementia, it doesn’t discriminate, it is a disability, and it is unkind. Be aware not to discriminate, be inclusive and be especially kind to all, and do everything to slow or prevent the onset of dementia for your own sake. 

Valerie Schache © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Emily Ong

Wow, it is already Day 9 of Dementia Awareness Month / World Alzheimer’s Month #WAM2019!

Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!

Today,  we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore.  Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia  find that by sharing with others, they find strength, and give others hope.

Image source: Emily Ong

Hello, my name is Emily Ong

June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.

I tried so hard to recall but NOTHING was retrieved.

It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.

By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.

Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!

I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?

At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.

It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.

Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).

I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.

Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.

My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.

Emily Ong  © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

#Hello, my name is Dr Ting Fei Ho

On Day 6 of Dementia Awareness Month (World Alzheimer’s Month), we share a daughters heartwrenching story of her mother. This year, we decided as part of the #Hello daily series of blogs to try and more fully represent people living with dementia, but also to share some stories from family members as well.

Today, for the first of our carer stories, we share that of a daughter living in Singapore, who has been fighting for the rights of her mother who lives in a residential aged care facility (nursing home) in Western Australia. Ironically, this story also highlights the denial of many human rights, and abuses of an elderly mother in Western Australia, part of a country where there is a currently Royal Commission into Quality and Safety into Aged Care! Thank you Ting Fei for sharing your mothers story.

Image source: Ho Ting Fei

Hello, I am Ting Fei. I am my mother’s voice for her dignity, personhood and justice. My mother has numerous medical issues, and is also diagnosed with dementia (but she suffers from neglect and abuse). She now lies immobile, helpless, with severe muscle contractures, in an aged care facility in Perth, WA, Australia.

My mother is a 90 year old Chinese lady, widowed in 2012. In July 2016 she walked (with a frame), fairly independent and able to perform basic tasks of daily living, into this nursing home. But, in less than two years, she is reduced to total dependency on full support for her daily living in a wheelchair. How did all these happen in a place her guardians (EPGs) boasted as a “5-star hotel resort style” aged care facility? What has gone wrong?

Here are some of the grotesque facts behind the scene at this river-front “resort”:

  • Her sons first denied the diagnosis of cognitive impairment and promptly brought her to change her will. They took control of her finances and issued a debit card in her name. Within a year, my mother suffered two falls in Perth. The second one was what prompted the sons to place her in this “resort”.

There was a history of “mild” stroke and delirium before the second fall but the medical records on this mysteriously disappeared. There was a warning about risks of falls but this was never heeded. Once she was in this “resort” her sons, who also applied to be her guardians, left almost all care to the general practitioner (GP) and care-givers at the home.

  • The GP has this strange conviction that all declines in general health, cognition, mobility, ability to feed an swallow, loss of muscle mass etc are part of the natural process of ageing. Hence no further management is necessary unless for acute conditions and emergencies. He does not believe that a geriatrician can better manage my mother in her state of dementia and failing health. So my mother was never prescribed any form of medication for her dementia; no post-stroke rehabilitation and no systematic follow up for her failing health.

But this GP does not hesitate to prescribe heavy doses of Panadol to my mother. He later added Endone (an opioid drug) to my mother, for her painful muscle contractures, with no adherence to safety protocols or monitoring of side effects over several months.

  • The care coordinator at the home who professes to be a trained sports physiologist believes that physiotherapy is harmful for my mother. Hence no active or passive physiotherapy was prescribed for her.

Under such care, my mother rapidly deteriorated in her mental, physical, and nutritional state; from being mobile to full dependency on a wheelchair, in less than two years after admission to this home.

There were a series of unexplained and poorly documented falls resulting in bruises and injuries, including one with frontal impact to her right eye ball. She suffered pressure sores with one deep chronic sore on her left ankle that only healed after more than one year. She suffered recurrent skin blisters and bruises over her body and limbs and also recurrent urinary tract infections. Her puffy face from over-dose of steroids was bragged as a sign of good nutrition with weight increase. Many more healthcare issues occurred that are too lengthy to describe.

What dignity is there when she is found soaked with urine dripping from her wheelchair, being undressed by two African men, with food left for hours in the mouth…..?

What person-centered care is there when she is isolated in a place where she had language limitations and where she does not get her familiar Chinese food?

What quality of life is there when she only gets a wheelchair/bed to sleep on, a roof over her head and three meals that she hardly can eat?

In three years I exhausted almost all avenues of help that I can ever think of in WA, a state that has no law against elder abuse. Where there is no law there is no prosecution for offenses and no protection.

My pleas for better quality of care and protection against abuse fell on deaf ears. Despite all the evidences available, no one was interested to know. The State Administrative Tribunal and the Supreme Court both concluded that my mother is happy and wishes to stay at this home; that her guardians and doctor have always looked after her best interest.

WHO defines Elder Abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”.

In the hands of people my mother loves and trusts, these are the tragic experiences she silently suffers ……. “a scandal beyond belief” indeed.

Ho Ting Feo © 2019

Footnote: Many public self advocates are regularly accused of not having dementia, or are chastised for ‘grossly misrepresenting’ dementia. Most are, however, well aware of what is ahead of  them, which could be the same as it is for Ting Fei’s mother.