MY MOM HAS ALZHEIMER'S - WILL I GET IT TOO?

My mother first showed signs of Alzheimer's Disease probably as early as 2008. She was 82 then. She couldn't remember dates, places and names of family members. She couldn't tell one day from another, and forgot what she just had for dinner or where she had left her purse.

That was 11 years ago. I had not heard of Alzheimer's Disease (AD) then. Like most people with elderly parents at home, I took these signs as part of the normal ageing process. It was commonly accepted that people turned senile (nyanyok) in their old age, so I wasn't too concerned about it. It was only later that I discovered having AD is NOT part of ageing. It does not happen to every elderly person.

My mom would repeatedly ask the same questions even though I had just given the answers. It was almost impossible to hold a simple conversation with her. Her attention would drift off to some distant places in her memory. It was as if a mist had clouded the clarity of the moment. She was there with me but yet not there. I didn't know then how to handle such a situation.

It took a fall at home and subsequent hip surgery for my mom in March 2011 before I learned about Alzheimer's. During the ten days my mom was in hospital, her doctor noticed signs of the disease in her behaviour. He suggested I take her to see a geriatrician for a proper examination. A visit to see Dr Philip Poi at UMMC Specialist Hospital and some tests later confirmed my mom had AD.

Learning more about dementia at Hogeweyk, Amsterdam, and pursuing an MSc degree in Applied Gerontology so I could better understand the ageing process.

Thus began my interest in reading up as much as I could about AD. In December 2013, I signed up for an online course on Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies offered by Johns Hopkins University. In 2015, my passion to learn more about AD took me to Hogeweyk, the world's first dementia village in Amsterdam. In 2017, I enrolled for MSc in Applied Gerontology at NTU, Singapore. At 70, I was the oldest graduand in the pioneer batch. I attended numerous conferences to learn about the latest developments in AD research and treatment. As my mom's primary caregiver, I wanted to know how to provide better care for her. At the same time I could learn how to avoid ending up with AD myself. And as a blogger and founder of a seniors' community, I could share what I have learned with others.

The statistics for Alzheimer's are alarming. According to the World Health Organisation Report (WHO) 2019, there are currently 50 million persons with dementia (PWDs). This number is expected to increase to over 150 million in 2050. The World Health Organisation (WHO) 2014 report put the number of people in Malaysia with dementia in 2015 at 123,000. This number was projected to be 261,000 by 2030 and would continue to increase to 590,000 people in 2050. Alarming statistics!

What's the difference between dementia and Alzheimer's Disease?

I have frequently been asked this question. Put simply, dementia is an umbrella term for a host of diseases that affect the normal functioning of the brain. Depending on which part of the brain is affected, diseases associated with dementia include Alzheimer's Disease, vascular dementia, Lewy bodies (DLB) and frontotemporal dementia. The most common of these is Alzheimer's Disease which affects mostly the elderly. However, early onset dementia affecting adults in their 40s and 50s is on the rise.

Is Alzheimer's Disease hereditary?

This is the golden question for me. Aside from my mom, my great grandmother probably had it too. When I was growing up in the 1950s I recall seeing her playing with a baby doll, and treating it as if it were her own child. Another time I saw her packing a few personal belongings in a sarong, and telling the family she was going to take a trishaw 'home', meaning China. These incidents are etched in my memory. I have at least four members in my extended family who were diagnosed with dementia (AD) in their final years. 

Like my mom, one of my aunts also showed signs of behavioural changes in her old age. She would accuse everyone of conspiracy, of hiding her passport and stealing her money. All not true, of course. But when she told me so-and-so had stolen her valuables, I believed her. It was only later when she was diagnosed with AD that everything she said and did began to make sense.

Does that put me at risk? Yes, but at risk does not mean 100% or even 30% certainty. I may or may not develop AD. There are preventive measures I can take to reduce the risks, such as exercises and activities that promote brain health and cognitive functioning.

Read about the APOE gene that determines whether you may be at risk of developing AD.

I am very forgetful. Is this a sign of early Alzheimer's Disease?

All of us are forgetful, some more than others. How often have we forgotten where we parked our car, the name of someone we have just been introduced to, or the lyrics of songs we used to sing? We refer to these lapses of memory as 'senior moments'. Red flags of AD include repeatedly forgetting recent events and confusion in retrieving them. This Mild Cognitive Impairment (MCI) or lapses in short-term memory may signal early Alzheimer's. Over time as the disease progresses, these memory lapses can potentially have serious consequences. My mom would forget to turn off the gas completely after cooking, forget to lock the front door when she left the house, or forget whether she had taken her medication. The latter could have resulted in a drug overdose. My mom also had mood swings, an obsession with collecting tissue paper and was prone to wandering around the house at wee hours of the morning.

My mom enjoyed browsing through newspapers and magazines. I bought this book for her in the hope the images would trigger recall from the deep recesses of her memory.

We often read in the papers of a missing elderly who later turned out to have forgotten how to get home. There are no statistics on the number of such cases in Malaysia. The Japan Times (June 2019) reported that a record 16,927 dementia patients in Japan went missing in 2018. Alarming indeed. Do not leave an elderly unaccompanied especially in an unfamiliar place e.g. a busy hospital or a noisy mall. My mom had on several occasions stopped midway to our neighbourhood supermarket, unsure whether she was heading in the right direction despite having walked there countless times before. Confusion with directions is common in PWDs.

Can Alzheimer's be prevented?

Thanks to Google and the efforts of the Alzheimer's Disease Foundation of Malaysia (ADFM) over the years to educate the public, we now know more about AD. Not everyone develops the disease in their old age. There are people in their 80s and 90s whose minds continue to remain sharp. 

At present there is no cure for AD despite what we read in the media, from coconut oil to ayuvedic treatment. Prescribed medicines for AD can only slow down the progress of the disease at best. Most of the drugs, e.g. memantine, have side effects. AD is a degenerative disease that can span many years, ultimately ending in death. I have watched my mom slowly change from a lively chatty woman to a shadow of her former self. After suffering a mini-stroke in February 2019, she lost her ability to speak, and her memory completely left her. She did not know who I was nor did she even ask. She would sit in total silence, in a world of her own where visitors were barred from entering.

When my mom was discharged from hospital after her second surgery, she was prescribed expensive drugs by one doctor after another. After several years of seeing little improvement in my mom, and on the advice of a doctor friend, I decided to stop all the medication. My mom remained mostly drug-free till the last couple of years after her stroke when she had to take prescription drugs as and when needed. In general she maintained a hearty appetite and slept well  That was good enough for me.

Here's what I would like to share from what I have learned and practised. Preventive steps for dementia do not cost much money. Follow a regular exercise regime and adopt a healthy diet. Monitor your sugar level, blood pressure and weight. Keep your brain actively engaged with mental stimulation such as learning a new language or a new skill. Travelling broadens the mind, so go on trips whenever you can. Finally, build a network of close friends and avoid social isolation.

What preventive measures do I take?

As I am at higher risk than others of getting Alzheimer's, I make sure I stay active physically and mentally. I have always been active, interested in and curious about a lot of things. I read a lot, especially on ageing-related issues. I write a lot too. Curating for news and events to share on Facebook keeps me mentally busy daily. These activities stimulate the brain. That is why I enrolled for my second masters degree at a late age. I also took up singing, line dancing and learned to play the ukulele. Memorizing lyrics, dance steps and ukulele chords helps to stimulate my brain cells. I have been attending courses offered by the University of the Third Age (U3A) since 2011. Lifelong learning keeps the brain well-oiled and the social connections I make will hopefully keep AD at bay. 'Never too old to learn new things' has become my mantra for living life with a positive mindset.

The Mini Mental State Exam (MMSE) is widely used to test for cognitive function. My mom refused to draw the clock when the doctor told her to. She probably could not remember the order of the numbers.

If you are curious to know whether you or a family member has early AD, you could try taking the Mini-Mental State Examnation (MMSE). It is a popular test for cognitive functioning, and includes tests on memory recall, language and focus. There is even a Malay version. The scores will provide an indication of whether the person has any cognitive impairment. As it is only a simple diagnostic test, it should be followed up with a visit to the geriatrician for a full examination. 

When the pandemic SOP allows it, drop by at ADFM community corner at Wisma Atria, PJ, to find out more about AD. There are weekly group activities there for PWDs (persons with dementia) and their caregivers.

(The above article was first posted in Nov 2019. It has been updated after my mom passed away in February 2021. Her journey with Alzheimer's lasted eleven years from her diagnosis. I am glad most of those years were relatively happy ones for her.)

MY MOM HAS ALZHEIMER'S - AM I AT RISK?

My mother first showed signs of Alzheimer's Disease probably as early as 2008. She was 82 then. She couldn't remember dates, places and names of family members. She didn't know one day from another, and forgot what she just had for dinner or where she had left her purse.

That was 11 years ago. I had not heard of Alzheimer's Disease (AD) then. Like most people with elderly parents at home, I took these signs as part of the normal ageing process. It was commonly accepted that people turned senile (nyanyok) in their old age, so I wasn't too concerned about it.

My mom would repeatedly ask the same questions even though I had just given the answers. It was almost impossible to hold a simple conversation with her. Her attention would drift off to some distant places in her memory. It was as if a mist had clouded the clarity of the moment. She was there with me but yet not there. I didn't know then how to handle such a situation.

It took a fall at home and hip surgery for my mom before I learned about Alzheimer's. During the ten days my mom was in hospital, her doctor noticed signs of the disease in her behaviour. He suggested I take her to see a geriatrician for a proper examination. A visit to see a geriatrician at UMMC Specialist Hospital and some tests later confirmed my mom had AD.

Thus began my interest in reading up as much as I could about AD. In December 2013, I signed up for an online course on Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies offered by Johns Hopkins University. In 2015, my passion to learn more about AD took me to Hogeweyk, the world's first dementia village in Amsterdam. In 2017, I enrolled for MSc in Applied Gerontology at NTU, Singapore. At 69, I was the oldest in the pioneer class. I attended numerous conferences to learn about the latest developments in AD research and treatment. As my mom's primary caregiver, I wanted to know how to better care for her. At the same time I could learn how to avoid ending up with AD. As a blogger and founder of a seniors' community, I could share what I have learned with others.

The statistics for Alzheimer's are alarming. According to the World Health Organisation Report (WHO) 2019, there are currently 50 million persons with dementia (PWDs). This number is expected to increase to over 150 million in 2050. The World Health Organisation (WHO) 2014 report put the number of people in Malaysia with dementia in 2015 at 123,000. This number was projected to be 261,000 by 2030 and would continue to increase to 590,000 people in 2050.

What's the difference between dementia and Alzheimer's Disease?

I have frequently been asked this question. Put simply, dementia is an umbrella term for a host of diseases that affect the normal functioning of the brain. Depending on which part of the brain is affected, diseases associated with dementia include Alzheimer's Disease, vascular dementia, Lewy bodies (DLB) and frontotemporal dementia. The most common of these is Alzheimer's Disease which affects mostly the elderly. However, early onset dementia affecting adults in their 40s and 50s is on the rise.

Is Alzheimer's Disease hereditary?

This is the golden question for me. My mom has AD. I believe my great grandmother had it too. When I was growing up in the 1950s I recall seeing her playing with a baby doll, and treating it as if it were her own child. Another time I saw her packing a few personal belongings in a sarong, and telling the family she was going to take a trishaw 'home', meaning China. These incidents are etched in my memory. I have at least four members in my extended family who were diagnosed with dementia (AD) in their final years.

Like my mom, one of my aunts also showed signs of behavioural changes in her old age. She would accuse everyone of conspiracy, of hiding her passport and stealing her money. All not true, of course. But when she told me so-and-so had stolen her valuables, I believed her. It was only later when she was diagnosed with AD that everything she said and did began to make sense.

Does that put me at risk? Yes, but at risk does not mean 100% or even 30% certainty. I may or may not develop AD. There are preventive measures I can take to reduce the risks, such as exercises and activities that promote brain health and cognitive functioning.

I am very forgetful. Is this a sign of early Alzheimer's Disease?

All of us are forgetful, some more than others. How often have we forgotten where we parked our car, the name of someone we have just been introduced to, or the lyrics of songs we used to sing? We refer to these lapses of memory as 'senior moments'. Red flags of AD include repeatedly forgetting recent events and confusion in retrieving them. This Mild Cognitive Impairment (MCI) or lapses in short-term memory may signal early Alzheimer's. Over time as the disease progresses, these memory lapses can potentially have serious consequences. My mom would forget to turn off the gas completely after cooking, forget to lock the front door when she left the house, or forget whether she had taken her medication. The latter could have resulted in a drug overdose. My mom also had mood swings, an obsession with collecting tissue paper and was prone to wandering around the house at wee hours of the morning.

My mom still enjoys browsing through newspapers and magazines. I bought this book for her in the hope the images would stir up fond memories.

We often read in the papers of a missing elderly who later turned out to have forgotten how to get home. There are no statistics on the number of such cases in Malaysia. The Japan Times (June 2019) reported that a record 16,927 dementia patients in Japan went missing in 2018. Alarming indeed. Do not leave an elderly unaccompanied especially in an unfamiliar place e.g. a busy hospital or a noisy mall. My mom had on several occasions stopped midway to our neighbourhood supermarket, unsure whether she was heading in the right direction despite having walked there countless times before. Confusion with directions is common in PWDs.

Can Alzheimer's be prevented?

Thanks to Google and the efforts of the Alzheimer's Disease Foundation of Malaysia (ADFM) over the years to educate the public, we now know more about AD. Not everyone develops the disease in their old age. There are people in their 80s and 90s whose minds continue to remain sharp. 

At present there is no cure for AD. Prescribed medicines for AD can only slow down the progress of the disease. Most of the drugs, e.g. memantine, have side effects. AD is a degenerative disease that can span many years, ultimately ending in death. I have watched my mom slowly change from a lively chatty woman to a shadow of her former self. After suffering a mini-stroke in February 2019, she has lost her ability to speak, and her memory has almost completely left her. She does not know who I am nor does she even ask. She sits in total silence, in a world of her own where no one can enter.

When my mom was discharged from hospital after her second surgery, she was prescribed expensive drugs by one doctor after another. After several years of seeing little improvement in my mom, and on the advice of a doctor friend, I decided to stop all the medication. My mom has been mostly drug-free since. She turned 93 in October 2019, still has a hearty appetite and sleeps well. That is good enough for me.

Preventive steps for dementia do not cost much money. Follow a regular exercise regime and adopt a healthy diet. Monitor your sugar level, blood pressure and weight. Keep your brain actively engaged with mental stimulation such as learning a new language or a new skill. Travelling broadens the mind, so go on trips whenever you can. Finally, build a network of close friends and avoid social isolation.

What preventive measures do I take?

As I am at higher risk than others of getting Alzheimer's, I make sure I stay active physically and mentally. I have always been active, interested in and curious about a lot of things. I read a lot, especially on ageing-related issues. I write a lot too. Curating for news and events to share on Facebook keeps me mentally busy daily. These activities stimulate the brain. That is why I enrolled for my second masters degree. I also took up singing, line dancing and learned to play the ukulele. Memorizing lyrics, dance steps and ukulele chords helps to stimulate my brain cells. I have been attending courses offered by the University of the Third Age (U3A) since 2011. Lifelong learning keeps the brain well-oiled and the social connections I make will hopefully keep AD at bay. 'Never too old to learn new things' has become my mantra for living life with a positive mindset.

KLSings' VoxPop choir performing at ADFM's 'Let's Talk About Alzheimer's' in conjunction with World Alzheimer's Day in September 2019.

If you are curious to know whether you or a family member has early AD, you could try taking the Mini-Mental State Examnation (MMSE). It is a popular test for cognitive functioning, and includes tests on memory recall, language and focus. There is even a Malay version. The scores will provide an indication of whether the person has any cognitive impairment. As it is only a simple diagnostic test, it should be followed up with a visit to the geriatrician for a full examination. 

Drop by at ADFM community corner at Wisma Atria, PJ, to find out more about AD. There are weekly group activities there for PWDs (persons with dementia) and their caregivers.

SHARING AWARENESS ABOUT ALZHEIMER'S

September is World Alzheimer's month. We will be featuring articles that will help promote awareness of Alzheimer's and also share stories by carers on how they cope with looking after a loved one with Alzheimer's - the most common form of dementia.

Here's one story published in Alzheimer's Association blog that will resonate with those of us caring for an elderly parent with Alzheimer's. It provides some answers to questions such as:

• How do we cope? 
• Is Alzheimer's hereditary? 
• How should we prepare for our future if tests show that we carry the Alzheimer's gene?

Be the Change You Wish to See in the World
by Daisy Duate

Five years ago, after being diagnosed with Alzheimer’s, my mom Sonia moved from Chicago to Missouri. She lived with my brother for a month and then with my sister for about a week. It was soon obvious that I had to take over the responsibility of being her primary caregiver. We were always inseparable, but now we are more inseparable than ever.

Due to a very long history of Alzheimer’s in my family, I was asked if I wanted to take part in a clinical study, which included a test to see if I carry the gene for early-onset familial Alzheimer’s.* I didn’t think twice. My brother and sister chose not to take it, but the minute it was brought to my attention, I wanted to do it. It was in my head from the beginning – what if I have Alzheimer’s and it is exposed at age 42 or 43? I am almost 40. Who is going to take care of my mother? Who is going to take care of me? I had to prepare myself.

I worked on getting all of my ducks in a row, taking all the proper measures and precautions.  I got life insurance right away so that someone would be able to take care of my mom and not have to put her in a nursing home. In addition to taking care of mom, I had to be willing to accept whether or not I will have the disease. Three-quarters of my family has passed away with Alzheimer’s. I am the only one of my siblings that wanted to be tested. I would like to think that I inspired my cousins – who are now interested in finding out if they carry the gene – as their mother was recently diagnosed as well.

As for me? The test came back positive. One day, I will have Alzheimer’s.

I don’t think of it; I simply shrug it off. I just see what my mom is going through and know I need to take care of her. In my younger years, I was a bit of a party animal – I owned a sports bar – and now my mom is my main focus in life. How can I be a caregiver to someone I love so much and not stand up for her and her needs as someone with the disease? She is what matters the most.

My typical day is very different from what it used to be. I wake up, make coffee and then wake up Mom. I often have to strip the bed and then take her to bathroom and get her into the shower. Then I brush her teeth, dress her and do her hair and makeup. I take her to work with me at my sister’s restaurant, and she is with me all day until I get off work. We often go on a walk to get some ice cream and go to the park. I end the day by taking her home and making her dinner. After she goes to bed, I go to sleep, and I do everything again the next day. It’s a whole new life.

The Alzheimer’s Association has been there for me every step of the way. I had already been on team Sonia’s Angels in the Walk to End Alzheimer’s for the past few years in support of my grandma and my mom. When I was diagnosed by my genetic counselor, I received information about grieving, counseling and caregiving from the Association. In my previous life, I had never been an activist; I was the quiet one. Now I advocate for my mom. If you wish to see a change in the world, you have to step up.

My involvement in the Dominantly Inherited Alzheimer Network (DIAN) study means that I take a variety of medications and skills tests. Although the whole group is supportive and loving, the medication is physically very painful for me. All the same, if my participation helps find a cure for someone in the future – whether it’s me or my nieces and nephews – I will take all of the pain. I try to stay positive. Everything happens for a reason, and life is too short to just mope around.

I help spread awareness because there is a stigma surrounding age and Alzheimer’s. People always tell me that I look 21 years old and can’t imagine that I could develop this disease at any time. The truth right now is that Mom has the disease; I have the gene, but I don’t have the disease yet. That is why I try not to dwell on it.

There is simply not enough money or exposure for Alzheimer’s. We have to get the word out in order to save the future for others. The more awareness we can raise, the better it is for the disease. We need to find – and fund – a cure. Alzheimer’s is currently the 6th leading cause of death; we must make strides to end it now.

*Younger/Early-onset Alzheimer’s caused by a genetic mutation is rare and the vast majority of early-onset and late-onset cases cannot be determined by a genetic test. Health professionals do not currently recommend routine genetic testing for Alzheimer’s disease, although testing for APOE-e4 is sometimes included as a part of research studies. For more information on Genetic testing, click here.

About the Author: Daisy Duarte, 39, is a caregiver for her mother Sonia, 59. Daisy speaks to colleges and other groups to raise awareness in the fight to end Alzheimer’s. Daisy and Sonia live in Missouri.

Your local Alzheimer's Organization:

Malaysia
Alzheimer's Disease Foundation Malaysia (ADFM)
14, Lorong Utara A, 46200, Petaling Jaya, Selangor, 46200
Phone:03-7958 1522

Alzheimer's Caregivers Network Malaysia

Singapore
Alzheimer's Disease Association Singapore
New Horizon Centre - Toa Payoh
Blk 157, Toa Payoh Lorong 1
#01-1195, Singapore 310157
Tel: 6353 8734

Dementia Helpline (Singapore): 6377 0700 (Mon to Fri, 9.00am - 6.00pm)

BEYOND DENTISTRY AND STOPPING DEMENTIA

August seems to be a popular month for seminars. I attended three, and had to skip two as they clashed with other commitments. Some of the information I picked up from each of these seminars is of relevance to seniors. I am sharing these slides and images below in the hope that our blog readers will benefit from the information given by the distinguished speakers.

Sat 15 August - Seminar on "Beyond Dentistry: More Than Teeth" presented by Channel News Asia and Specialist Dental Group of Singapore

Who would want to pay S$10 and spend Saturday afternoon listening to a group of dental and medical specialists talk about tooth decay, gum disease, etcetera? The answer: 500 people! Dental talks can be most boring, but the six specialists certainly knew how to inform, impress and entertain the audience with their lively presentation of the latest advances in dental care. 

A packed ballroom at the dental seminar. (Image from Specialist Dental Group blog)

While every one of the six speakers had good advice to offer on how to maintain dental health and ensure our teeth last a lifetime, the talk that resonated most with me as a senior citizen was 'Better Teeth, Better Years' delivered by prosthodontist Dr Neo Tee Khin. 

Remember how we dreaded going to the dentist during our childhood days in the 1950s and 60s? Qualified dentists were a rare breed then, especially in the small towns. Those we had were men in white who had learned their trade from other men in white before them through a period of apprenticeship. The fastest remedy for a persistent toothache in those days was an immediate extraction. That's how many ended up losing good teeth and having them replaced with ill-fitting dentures.

Thank goodness dentistry today has gone far beyond those dark days of terror in the dentist's chair. Dentists, like doctors, are sworn to save our teeth. Extraction is always the last resort. If you have a choice and if you can afford it, go for implants rather than dentures. They fit better, function and look like natural teeth, and last a lifetime if you practise dental hygiene diligently.

The speakers. Very impressive qualifications and credentials.  Click here for their biodata. 

Poor dental hygiene can lead to health problems like diabetes, hypertension, heart disease/stroke, lung infections, stomach ulcers, cancer and even erectile dysfunction. To maintain strong teeth and healthy gums, visit your dentist every six months, brush your teeth twice a day (also after meals if you can), and FLOSS, FLOSS, FLOSS!

For more about each of the talks and the speakers, click here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thurs 13 August - Symposium on "Ageing in Malaysia: From Molecules to Community" organized jointly by Universiti Kebangsaan Malaysia (UKM), Universiti Teknologi Mara (UiTM) and Universiti Putra Malaysia (UPM)

Sat 22 August - Seminar on "The Rising Tide - Dementia - Can we stop it?" organized by the Gerontological Society, Singapore

Both seminars focused on dementia and shared similar findings from the research studies done although the racial demographics differed. Some images of slides taken from the talks:

Both Malaysia and Singapore will have an ageing population by 2050. This will see a rise in the number of people with dementia. 

As the population ages, we are seeing a dramatic rise in cases of dementia among the elderly. What are the signs of dementia? Is it preventable? Curable? Inheritable? How can caregivers deal with the stress of looking after a dementia patient 24/7? What are the costs involved in dementia care? These were some of the questions that the three speakers addressed.

A/Prof Dr Rathi Mahendran reported on the Jurong Ageing Study (JAS), conducted to find out how interventions of mindfulness, art, tai chi and music reminiscence can help the elderly with mental health problems. Click here to view a video of Prof Kua Ee Heok taking about the study.

Pay heed to the risk factors. 

Immediate Past President of the Gerontological Society of Singapore, A/Prof Goh Lee Gan shared on the Dementia Prevention Program. He called for volunteers to be trained to assist with conducting the program. Click here to view related video of Prof Kua Ee Heok explaining the program.

A briefing session for volunteers on the components of the program. Interested? Please contact Ms Chan Hui Yu at chan_hui_yu@nuhs.edu.sg

The Health component of the program in detail

The same advice for both Malaysians and Singaporeans on how to reduce the risks of getting dementia

With Prof Kua Ee Heok. We hail from the same hometown of Batu Pahat, and share a common interest in dementia. An Oxford-Harvard graduate in psychiatry, Prof Kua has written many books on the subject and is a much sought after speaker on ageing and mental health issues. 

A NEW HOME FOR MOM

Who among us would not want to live a long and happy life? We all want to enjoy our golden years in good health, and that means being able to take care of ourselves and remaining physically active and mentally sound. 

But life does not always give us what we want. What happens when old age brings with it a host of health problems? What do we do if our elderly parents are in this situation and we are unable to look after them for one reason or another? Or for that matter, where do we go when we ourselves reach old age, and we too need to be looked after?

This is where daycare centres for the elderly, residential homecare centres and nursing homes come in. They play a vital role in providing care for the elderly who require assistance with activities of daily living.

Mom (photo taken on 26/11/14)

Unfortunately, the number of care centres and homes for the elderly in the country has not risen in tandem with the rapid rise in the ageing population. According to the Department of Statistics, Malaysia, life expectancy has increased from 63.1 to 71.9 years for male, and 66 to 76.6 for female, from 1966 to 2010. It is projected to increase further in 2040 when men can expect to live to 78 years and women to 83.

Between 2010 and 2040, the number of Malaysians aged 65 years and above are projected to triple. Based on these figures, Malaysia will become an ageing country as early as 2021 when the population aged 65 years and over reach 7.1 per cent.

These figures are a cause for concern. Will the number of aged care facilities be able to cope with the surge in the elderly population?

Socio-economic changes have resulted in smaller family size. While in the past there was always someone at home to look after the elderly parents, today they are often left alone at home to fend for themselves when their adult children are at work. What if they fall and hurt themselves? What if they suffer a stroke or a heart attack? Who is there to send them to the hospital or call for an ambulance?

That was exactly what happened one Sunday evening in March 2011. I came home to find my mother sprawled on the floor unable to move. I had left her on her own to attend a workshop in another state. I dread to think of what would have happened if I had returned a day later. It was a traumatic experience for me.

At the hospital x-rays confirmed that my mom had sustained a hip fracture and would require surgery. During her 10-day post-surgery recovery in the hospital, the doctor informed me that my mom was showing signs of Alzheimer’s Disease (AD). He advised me to get her examined by a geriatrician at Universiti Malaya Medical Centre (UMMC). All along I had assumed that her memory lapses and occasional odd behavior were due to old age. My mom was 85 at the time.

The six months of post-surgery rehabilitation was a most trying period for both of us. It was my first experience of being the sole caregiver and it left me physically exhausted and emotionally drained. My mom’s failing memory plus her limited mobility meant that she needed constant supervision which I was unable to provide for the long term.

Mom at the ADFM Day Care Center in Section 11, PJ

I was fortunate to discover the ADFM daycare centre in PJ, near UMMC. I had read an announcement in the papers of a talk to be held at the centre. I visited the centre and liked what I saw. The facility was clean and elder-friendly. There were daily activities to engage the clients physically and mentally. The staff were trained and qualified. My mom would be in the company of people her age group, and she wouldn’t have only me for company.

The centre could do with a name change, but the facilities and care provided are excellent.

My mom was at the PJ daycare centre for three months. When the Dementia Homecare Centre at Telok Panglima Garang started accepting admissions in September 2011, my mom moved in there. She has since settled in comfortably and enjoys the peace and quiet of the place.

It has been three years now and my mom regards the centre as her home. She is well taken care of by the staff. I visit her regularly to make sure she has everything she needs. We enjoy chatting and sharing stories. I am also aware that one day she may no longer recognize me. As her condition advances, she will require more nursing care. I am confident ADFM will be able to provide the care and attention she needs. I know I can’t.

The proposed ADFM training and care centre to be built in PJ Old Town. (Photo: The Star)

The traditional family unit has changed with the times. These changes necessitate a change in our mindset too. Does placing an elderly parent in a home reflect a lack of filial piety? I have thought long and deep about this. And the answer is No. Not if they need professional nursing care and we are unable to provide that at home. Not if they have dementia and must be supervised 24/7. Not if it is no longer safe for them to be left alone.

There are so many things to worry about when an elderly parent with dementia is left alone at home. Did mom remember to take her medication? What if she took more than prescribed and overdosed? What if she fell and lost consciousness? What if she forgot to turn off the gas stove, or lock the front door? What if she wandered off and couldn’t remember her way back?

It is our responsibility to make sure that we choose the right home where our parents get the best possible care. I am happy to say ADFM’s Dementia Homecare is the home sweet home for my mom. She is happy there and no longer remembers where her own home is.

Find out more about Alzheimer's and ADFM at http://www.adfm.org.my/Home/foundation 

Ultimately, it is an individual decision. Each family has to decide what to do when the time comes for mom and dad to be looked after 24/7. But just remember the dire consequences should anything disastrous happen to an elderly parent who lives alone.

One day it will be our adult children to worry about us. What will their decision be then? How will we react to their decision? Only time will tell.

The above article (text only) first appeared in ADFM's special limited edition of "Sharing" magazine that was published in conjunction with the "Forget-Me-Not" concert held on 5 Dec 2014 in honour of the Sultan of Selangor's 69th birthday, and also to raise funds for the building of ADFM's new training and care centre in PJ.

Updated on 6 Dec 2020: 

Less than a year after the above concert at KLCC on 5 Dec 2014, the residential Dementia Care Home at Teluk Panglima Garang closed on 31 August 2015. Most unfortunate as my mom loved the place and was really happy there. In my opinion, it remains the best dementia care home I have visited. 

I have blogged about my mom's first and second falls and the rehabilitation and care that followed, as well as the costs incurred. The articles can be assessed on SeniorsAloud blog archives for March 2011, and for July 2015.

A VILLAGE FOR THOSE WITH DEMENTIA

Hogewey is a gated model village specially designed for dementia patients

After watching Dr Sanjay Gupta's documentary "Dementia Village" last Saturday night on CNN, my first thought was - if only there was such a village in Malaysia or Singapore!

In a speech at the 3rd Singapore International Neurocognitive Symposium, 5 April 2013, Singapore's Minister for Health, Mr Gan Kim Yong, said that the country currently has about 28,000 elderly aged 60 years and above with dementia, and this is expected to more than double to 80,000 by 2030.

Figures for England and Wales

Singapore isn't alone in this. With global ageing, countries are seeing a huge rise in the number of people with dementia. The World Health Organization reports that worldwide, nearly 35.6 million people live with dementia. This number is expected to rise to 65.7 million by 2030, and more than triple to 115.4 million by 2050.

While most countries are still focusing on awareness, prevention and care-giving, the Netherlands has moved far ahead with new concepts on housing and lifestyles for those with dementia. In 2010 I had the pleasure of attending a talk by Dr Hans Becker, who heads the Humanitas Foundation. That was the first time I heard about his 'Apartments for Life'. Housing developers, including those in Singapore and Malaysia, are incorporating some of the features in their new projects.

Now there is Hogewey, a gated village of 23 houses, with each reflecting a certain lifestyle that the residents are accustomed to or wish to enjoy. Opened in December 2009, Hogewey has drawn worldwide attention for its innovative approach to providing dementia patients with a sense of 'living in the real world'. The village has its own shops, restaurants, theatres - just like in any village. The only difference is that no money exchanges hands. And of course, all the residents have dementia, with many in the advanced stage.

Dr Sanjay shares the five things he learned from his visit to Hogewey. Click here to read. And do watch the video to find out more about this Dementia Village.



In Malaysia, although we do have a residential care centre specifically for dementia patients, it is no way close to what Hogewey offers. Still, I am happy to have discovered Dementia Homecare Centre in Teluk Panglima Garang for my mother. She is happy with the place. It is clean and well-maintained. The staff have nursing experience and qualifications. Best of all, there is a daily schedule of activities, incorporating exercises, singing, and games. My only complaint is the name. Surely the directors can come up with something more inspiring.

You can read more about this homecare centre at the link below.

A Home Sweet Home for My Mom

THE LONG ROAD TO THE FINAL GOODBYE

Alzheimer's purple ribbon 

It's been a week now since the National Caregivers' Seminar up in Genting (see previous post). I continue to receive email enquiries about the seminar and also about the daycare centres that were recommended. Some of you have written to me about the daily challenges you face as a caregiver. I thank you all for writing and for sharing. I am glad many of you have found the post informative and helpful.

Here are two videos I would like to share. The first video was screened during Dr Donald Yeo's presentation at the seminar. It features well-known psychologist Dr Richard Taylor who has dementia. He has made it his mission to change public perception of people who have dementia.



The second video is a BBC interview with singer-songwriter Glen Campbell and his wife Kim after he was diagnosed with AD in June last year. At 76 and battling Alzheimer's, it is incredible that Campbell still remembers his lyrics and guitar chords. Truly an inspiration. Click here for a Youtube video of clips from Campbell's goodbye tour in February 2012. Do view especially if you are a Campbell fan.


In Singapore, it is estimated that about 28,000 seniors aged 60 and above suffer from dementia. This number is expected to increase to 80,000 by 2030. A study called WiSE (Well-being of the Singapore Elderly) is currently underway, led by the Institute of Mental Health, to better understand dementia in order to provide early intervention and reduce the burden on caregivers.

Alzheimer's Disease is the most common form of dementia. There is currently no cure for AD. For this reason, it is often referred to as 'The Long Goodbye'.

A HOME SWEET HOME FOR MY MOM

Take note of the address and contact number. Not many people know of this centre. It's about 45-60 minutes drive from  KL/PJ.

Ever since I wrote in an earlier post that my mother has dementia and is currently staying in a home-care centre specially catering for folks with dementia, I have received many requests for more information on the place.

I hope the pictures below as well as my comments will provide some answers to the frequently asked questions about the home. For more about dementia or Alzheimer's, just type either word in the search box in the side column. I have done a lot of research on the topic and am happy to share with those who are interested. Happy reading!

A view of the centre from the outside. Well-kept garden, fresh air, peace and quiet and the sound of running water from the fountain to the left (not in view). There is a pre-school in the same compound. I think it's great to have the bookend generations sharing space. The sight and sound of children helps to liven up the place.

Spacious, clean, bright and well-ventilated. Such conditions are almost non-existent in most care centres that I have visited.

Some of the residents having lunch. Through the windows, you can catch a glimpse of the dragon fruit orchard at the back of the centre. There is also a swiftlet farm in the same back compound. Most of the residents are able to feed themselves and move around on their own.

The dormitory with six beds and two attached bathrooms. Rooms with two beds and three beds are also available as well as single rooms. All rooms have attached bathrooms and toilets. I have seen centres where as many as 20 beds are crammed into a similar-sized room, with barely two feet of space separating the beds.

There are different activities on weekends which are also the days when family members usually visit. They are encouraged to make regular visits to the centre and spend time with their parent.

One reason why I chose this home-care centre for my mom is the structured programme of daily activities to stimulate the mind and keep the residents occupied. It's like going back to kindergarten for them. They learn the 3Rs all over again to help boost their memory. In most homes, the residents are left to themselves to do their own thing. Most end up either lying in bed all the time or starring blankly into space. How utterly depressing!

Jigsaw puzzles, card games and many more. Going through a second childhood for the residents.

An hour of singing the oldies and playing percussion before lunch. Not everyone is into singing, but everyone tries. The residents are encouraged to participate in all the activities. No one is forced to do anything against their will.

The daily menu. My mom has a very healthy appetite. She enjoys every meal at the centre.

Morning exercises to improve flexibility and balance. The staff are all trained nurses. Staff to resident ratio is 1:2.

Members of the Philharmonic Orchestra performing at the centre in May. Special events are organized for the residents. The Alzheimer's Disease Foundation of Malaysia (ADFM) is organizing an overnight trip to Genting Highlands for the residents and their carers from 12-13 October in conjunction with World Alzheimer's Day. (See poster below for more details).

My 86-year old mom with Angela Lee who manages the centre. Angela holds a degree in Nursing Science and was a lecturer at a nursing college before she took up her current post. She is pursuing her Masters on a part-time basis. I personally find Angela very knowledgeable, experienced, and caring - important attributes for anyone looking after the elderly.

Me and my mom. I try to visit as often as I can. I am glad I have found a place for my mom that she is happy with. I must have checked out a dozen or more homes before my search led me first to the Alzheimer's Daycare Centre in PJ . My mom was there for three months before she moved to the Dementia Homecare Centre in Telok Panglima Garang in September 2011. Both homes are run by the Alzheimer's Disease Foundation of Malaysia (ADFM). Please click on the links for more about the daycare centre in Section 11, PJ.

Admission to either centre is strict. You need a doctor's referral, preferably from a geriatrician who will have to verify that your parent does have dementia or Alzheimer's. This is done through a series of cognitive tests. My mother was seen by Dr Philip Poi of Universiti Malaya Medical Centre. She was examined and put through tests at the Memory Clinic and diagnosed as having signs of Alzheimer's Disease. 

If you wish to know more, please contact the centres directly or email me at seniorsaloud@gmail.com

Update: The Dementia Homecare Centre (DHC) closed its doors on 31 Aug 2015. Two months earlier my mom had a fall and broke her left femur. After she was discharged from hospital, there was no point for her to return to DHC. Instead she was admitted to a nursing home for post-surgery rehabilitation. She has remained there since. My mom was the happiest at DMC, often inviting her visitors to 'come and stay here. It's so quiet and peaceful.'

Related article:

Am I just forgetful or do I have dementia?