Saturday, November 30, 2019

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.

Thursday, October 31, 2019

HOW AGE-FRIENDLY IS OUR CITY?


Sometimes one can't help but wonder whether our city fathers and policy-makers consider the special needs of older people when they make decisions on improving the city's infrastructure and public facilities. Do they study the demographics when they brainstorm at meetings?

Admittedly there have been some improvement over the past few years, but there is still much more that City Hall can do to make Kuala Lumpur an age-friendly city. Taiping has just been picked for the first stage of the Age-Friendly Pilot Project financed with a grant of RM1.1million from UNDP. The project will be based on World Health Organisation (WHO) guidelines. Perhaps KL can take a cue from the project.

Here are some suggestions on how City Hall as well as the private sector (and also city dwellers in general) can make it easier for older people to move around in the city, and enjoy a day out on their own or with friends.

PUBLIC TRANSPORT

I gave up driving about 20 years ago, and have been relying mostly on public transport to get around. So my grouses here are mostly about the state of our public transport system. Thank goodness the days of the pink mini-buses and their wannabe F1 drivers are gone.

SeniorsAloud used to run a weekly facebook post on Fridays to highlight shoddy public works, poor maintenance culture and lack of age-friendly facilities. We took hundreds of photos and posted many of them as evidence. Glad that there has been much improvement since then. 
It took years but public transport has improved tremendously with the introduction of air-conditioned buses and trains that run on schedule most of the time. There are now free shuttle buses serving Kuala Lumpur city centre and Petaling Jaya township. Senior citizens aged 60 and above enjoy 50% off all fares. Kudos to the Ministry of Transport for these improvements. When we make enough noise, they listen. (Click here to read some of our previous complaints).

All kinds of notices and advertisements, but no information on bus routes
However, information about bus routes is not easily available. Many senior commuters have no clue what buses to take to reach their destinations. They are not internet-savvy, so we can't expect them to go online to check for information. The design of buses leave much to be desired for the elderly who find the steps too high for them to board easily. Only a handful of buses offer wheelchair access. No wonder we hardly see any OKU out on their own in the city.

Facilities at LRT/MRT and monorail stations have improved, but stairs like the above can be challenging for the elderly. Not all stations have escalators and lifts, and not all are always in working condition.
Just looking at the stairs is exhausting to an elderly. But how
else to cross the busy road to Ampang LRT station if not by this overhead bridge?

PEDESTRIAN CROSSINGS AND KERBS


A challenge for the elderly to cross busy Jalan Ampang at KLCC. KL drivers and motorcyclists are not known for their patience.
The timing device at pedestrian crossings covering more than three lanes should be calibrated to give enough time for the elderly to make it safely across. An example is the Jalan Ampang crossing at KLCC/AvenueK. Is a 23-second time gap sufficient for the elderly and parents with young children to reach the opposite side safely? The elderly will have to cross busy roads at their own risk.

Evidence of poor planning and poor maintenance. The narrow sidewalk does not allow strollers or wheelchair access.

PUBLIC RESTROOMS 


Only squat toilets at this premier department store, and no grab bars. A challenge for older women with knee problems to use these restrooms. 
Incontinence is a common problem for most senior citizens. Is it any wonder that they prefer to stay at home than go out to crowded places where the public toilets are either in short supply or in a filthy state? There is also the problem of long lines at the ladies restrooms. There is no priority queuing for elderly ladies. And while on the subject of public loos, how is it possible that one of the biggest departmental stores in the country does NOT have seated toilets in their restrooms? Don't they know that the elderly can't squat because of knee problems?

SHOPPING MALLS


No benches to rest tired feet for the elderly while waiting for their e-hailing cabs or while waiting for their family members to finish their shopping.
Seniors enjoy walking around in shopping malls. The sights and sounds are a source of wonder and amazement to them, especially if they are visiting from the smaller towns. Unfortunately, the lack of facilities for wheelchair access, long lines at washrooms, and few rest areas make an outing to the mall an ordeal for the less abled elderly.

Educating the public about respecting the elderly is also important. How many young people will give up their seats on the train for a senior citizen, an OKU or a pregnant woman? Would older people be given priority in boarding buses?

The rush to board the bus. Gets worse during peak evening hours. The elderly get crushed by eager young men who push their way through. 

Credit must be given to govt buildings and banks that have special lanes or counters to serve the warga emas. We are also seeing more outdoor gyms for senior citizens and safer walkways and lanes for pedestrians. Let's hope for more improvements to follow.

The award for the worst design for bus stops goes to KLCC! No bus information boards, and these 'seats' are meant for perching on or leaning against, not for sitting and waiting for the bus. Most age-unfriendly!

For those interested in knowing what constitutes an age-friendly city, here is WHO's checklist of what an age-friendly city should be and should have. How does Kuala Lumpur fare?