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'.

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CAREGIVERS, KNOW THAT YOU ARE NOT ALONE

Last weekend I attended the National Caregivers Seminar organized by the Alzheimer's Disease Foundation of Malaysia (ADFM). It was time well spent as I learned much and met with caregivers from Johor, Malacca, Penang and Ipoh. As any caregiver will tell you, knowing there are others who are facing the same challenges gives you the vital support to get through each day of care-giving.

For the record, here is a list of the doctors who spoke and their presentations:

• Dr Lee Fatt Soon (General Hospital, KL) - "Managing Medical Conditions in Dementia"
• Dr Donald Yeo Hong Huang (General Hospital, Singapore) - "Person-Centred Dementia Care - The Singapore Experience"
• Dr Ho Bee Kiau (Health Clinic, Klang) - "Mentally Stimulating Activities Can Delay Dementia"
• Dr Gemma KC Law Wong (Hongkong University, HK) - "Caring for Someone with Dementia in Home Environment"
• Dr Lu-Ann Chong (UMMC, PJ) - "Prevention of Alzheimer's Disease - Healthy Brain Initiatives"
• Dr Bharathi Vengadasalam (UPM, Serdang) - "Ain't Misbehaving: Understanding and Managing Difficult Behaviours"
• Dr Tan Maw Pin (Universiti Malaya) - "Fall Risk Assessment on people with Dementia and Effective Preventive Measures"
• Dr Esther Ebenezer (Royal College of Medicine, Ipoh) - "Caring for Someone with AD"
• Mr Thillainathan Krishnan (Hospital Selayang, KL) - "Assisted Daily Living for Person with Dementia"

From left: Dr Gemma, Dr Lee and Dr Esther

Day 1 began on Friday evening with an interactive caregivers' dialogue with Dr Gemma and Dr Esther. Caregivers shared their experiences looking after their elderly loved ones, and nurse managers of care centres also shared creative ideas on how to handle difficult situations with AD clients.

Everyone who spoke had the same advice to share with caregivers:

• Look after yourself. A stressed out caregiver is of little help to the person with AD
• Take a break when you feel overwhelmed, and don't feel guilty about it.
• Adopt a positive attitude and learn to accept little acts of 'misbehaviour'. 
• Know you are not alone. Join an AD caregivers support group.

Strong support from caregivers, members of the medical and nursing fraternity as well as the public.

Some of the caregivers brought along their elderly parents. It was touching to see the loving care and patience shown by these caregivers. These acts of filial piety auger well for the future. Our children learn from us. They follow by example. How we treat our parents is an indication of how our children will treat us in our old age. 

Herbert Chong (right) shares the role of caregiver with his brother Chee Wah. Their father, Chong Kim Swee (left), 85, stays two weeks in rotation with each son. Shared responsibility helps to reduce the stress of care-giving.

Tan Suat Eng (right) with her mother Ng Siew Poh, 83. Mdm Ng lives with her youngest son on the first floor of a condo. Suat Eng is on the third floor so she gets to spend time with her mom daily. A very practical arrangement!

Caring for a parent with AD requires the cooperation  and support of the whole family. Care-giving is not only a drain on your financial resources but also on your energy. So when the whole family shares in looking after mom or dad, everyone benefits.

Here is a selection of slides that might be of interest to our viewers.

Scary figures. Knowledge precedes action. Governments need to intervene and be prepared for the dementia tsunami as the population ages. (Above slides from Dr  Lu-Ann Chong's presentation)

People with dementia have the same wish list as any of us. Why should we treat them differently? (Above slide from Dr Donald Yeo's presentation.)

Dr Bharathi's slides below highlight some of symptoms we should look out for, and offer practical advice on how to care for those with dementia.

All of us experience forgetfulness on a daily basis. Is this part of the ageing process? No, it isn't. It is only when forgetfulness affects our activities of daily living (ADL) that we should be concerned.

Occupational therapist Mr Thillainathan Krishnan explains ADL. Are our elderly parents able to perform all these activities independently?

Dr Tan points out that falls increase dependency on the caregiver, especially in using the stairs, toilets and showers.

Here is a list of registered Dementia daycare and residential care centres in Malaysia:

Nurse managers: (left) Jade Wong who manages the ADFM daycare centre in PJ, and (right) Angela Lee who runs the Dementia Homecare Centre in Telok Panglima Garang, Klang. Both have degrees in Nursing.

Dementia Care Centres:

Rumah Alzheimer's

6, Lorong 11/8E, Petaling Jaya, Selangor

Tel: 603-7956 2008 / 7958 3008

KL Daycare Centre

9A, Lorong Bukit Raja,

Taman Seputeh, Kuala Lumpur

Tel: 603-2260 3158

Dementia Homecare Centre

PT 715, Jalan Pandan 26,

Telok Panglima Garang, Selangor

Tel: 603-3122 6908 

ACE Daycare Centre

115-1, Jalan Mayang 3

Taman Peringgit Jaya, Malacca

Tel: 606-284 7886

JOBADA Activity Centre

43, Jalan Petri, Kampung Tarom, Johor Bahru

Tel: 607 - 222 4016

Dementia Daycare Centre

15, Jalan Foo Choong Nyit, Ipoh

Tel: 605-241 1691 or 019-571 2738 (April Loh)

ADFM Head Office

6, Lorong 11/8E, Petaling Jaya, Selangor

Tel: 603-7956 2008 / 7958 3008

Fax: 603-7960 8482

Email: adfmsec@streamyx.com
Website: http://www.adfm.org.my/

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AM I JUST FORGETFUL OR DO I HAVE DEMENTIA?

Me, my mom, my elder daughter and my
mom's four great-grandkids at Dementia
Homecare Centre during a recent CNY visit,

When the doctor told me last March that my mother had dementia, the news wasn't exactly a shock. My mother had become increasingly forgetful over the past months, and acting peculiar. Initially I put it down as part of ageing. After all, she was 85 at the time. Moreover, she could answer all three questions I asked her. This was a tip from my neighbour, a retired registered nurse. If my mom could give her age, full name and the names of all her children, she was okay.

My mom passed this simple test, and so I let the matter rest. Everything changed after she fell and broke her hip on 6 March 2011. During her 10-day stay at the hospital after the hip surgery, the doctors and nurses noticed signs of dementia in my mother. One of her doctors recommended that she see a geriatrician. To cut the story short, Dr Philip Poi of UMSC confirmed my mom had dementia.

My mother was subjected to several tests. One of them was the clock test. It's simple and can be done at home. If you suspect your elderly parent might have AD, ask him to draw a clock and fill in all the numbers. You may be surprised at the result.

If you have noticed certain signs of absent-mindedness, but you are not quite sure of these are early signs of Alzheimer's, you can take this test below. A ‘yes’ is given a score of one or two and a ‘no’ always scores zero, giving a maximum possible score of 27.

A score of less than five suggests there is no cause for concern, five to 14 suggests mild cognitive impairment or early stages of Alzheimer's, and a score higher than 14 could denote the person may already have AD.

21-question test for Alzheimer's. Click on Daily Mail for a bigger and clearer image.

By the way, what's the difference between dementia and Alzheimer's Disease? Dementia refers to symptoms of forgetfulness that may impact a person's daily functioning (see table above). AD is a specific type of dementia. It is the most common and affects mainly people aged 65 and above.

In my mom's case, she was constantly checking the calendar and the clock, wandering around the house even in the middle of the night and repeating stories umpteen times to the extent I had to rescue whoever she happened to be chatting with. She couldn't remember if she had taken her pills, showered or washed her hair. She forgot where she kept her things and often blamed the maid for stealing them. Fortunately the maid took her accusations as a symptom of dementia. These were some of the changes I noticed in my mom as her dementia progressed.

AD is incurable. But there are ways to slow down the advance. Do a Google or Youtube search, and you will be inundated by the number of links and videos that show up. The challenge is finding the most reliable recommendation. I can only share what the doctors have recommended for my mother.

You can check out the daycare centre where my mom spent three months last year at the link below. Lots of pictures of the place. If you have a loved one who has dementia, I highly recommend this centre in PJ. It is in Section 11, across the road from Universiti Hospital. Email me at seniorsaloud@gmail.com if you want to know more about the facilities and the caregiving services there.

The centre is holding a talk by a caregiver this Saturday at its premises. It is a good opportunity to learn more about dementia and AD, and also check out the place.

Related articles:

A DAYCARE CENTRE THAT'S LIKE A SECOND HOME

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HOPE FOR DEMENTIA PATIENTS?

I once asked my mom's cardiologist which diseases doctors feared most for themselves. His immediate answer: stroke and dementia. I had expected him to say cancer.

Dementia is incurable, irreversible and terminal. At least that is what doctors and medical researchers claim. The disease doesn't concern us much until it strikes our elderly parents and they start showing signs of deteriorating mental health.

After my mom was diagnosed with dementia in March last year, I read anything I could lay my hands on about the disease. I now having a better understanding of what it can do to the patient, and can empathize with caregivers of dementia patients.

Prescription drugs only help to slow down the ravages of the disease. Do a search on Google and Youtube and you will be amazed at the myriad of miracle cures for dementia. The video below is one example.



Researchers say the ketones found in coconut oil have slowed the progression of Alzheimer's disease in some people and may actually prevent it. Do you know of anyone who has tried this cure with encouraging results?

A word of caution. This video is posted here for educational purposes only. What works for some people may not work for others. Consult a doctor before experimenting with any alleged remedies.

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ALZHEIMER'S - TAKING IT ONE DAY AT A TIME

Last Thursday, my mother had her first appointment at the 'Memory Clinic' - an euphemism for the Psychiatric Clinic. If you have never spent hours waiting in a crowded government hospital, count yourself lucky. It's not an experience you want to subject yourself to, if you can help it. It's very depressing, more so in a clinic filled with elderly people in various stages of mental decline.

As I sat there, looking at the expressionless faces of the old people around me, I wondered what was going on in their mind. What were they thinking about? Was there now one huge void where memories once held sway?

I turned to my mother as she sat in the wheelchair staring blankly at the clock on the wall. "What are you thinking about?" I asked. "Nothing," came her reply. I must have repeated the question a dozen times during the four hours we were at the hospital. Her answer was always the same -"Nothing".

Footnote: The KL-PJ Caregivers Support Group will be holding its monthly gathering and talk on Saturday 19 Nov, 2.00pm, at ADFM PJ Daycare Centre, 6 Lorong 11/8E, Section 11, 46200 Petaling Jaya:

TOPIC: “Can Alzheimer’s Disease Be Prevented?”
Speaker : Dr Rajbans, Consultant, Pantai Hospital Bangsar, Kuala Lumpur,

Kindly confirm your attendance early.

Email to jenny@adfm.org.my / Tel: 03-7956 2008/7958 3008 / SMS 016- 608 2513 / Fax 03-7960 8482 or contact Christine at 03-2260 3158

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A DAYCARE CENTRE THAT'S LIKE A SECOND HOME

Sharing tips on how to use creativity to enhance memory at ADFM.

Sometime back in May, a small announcement in the papers caught my attention. It was a free talk on "How to manage your memory with creativity". What drew my attention wasn't so much the topic as the venue of the talk - Alzheimer's Disease Foundation of Malaysia (ADFM), PJ.

For the past few months I've been checking out daycare centres for my mom. I must have visited more than a dozen. None of them had what I was looking for - a daily schedule of activities to keep the elderly mentally, physically and socially occupied. At every home that I visited, the residents were left on their own most of the time. They would either be staring blankly at the TV screen, or lying in bed waiting listlessly for the next meal. The carers were always too busy to give individual attention.

ADFM has a strong support group of volunteers that organizes free monthly talks for the public. Last Saturday caregivers shared their personal challenges in caring for their elderly parents or spouse with AD. Moral support helps reduce the stress that primary caregivers often face. 

On my first visit to ADFM in Petaling Jaya, I knew my search was finally over. This was the perfect daycare centre for my mother. However, admission was not that straightforward. I had to get a geriatrician to diagnose that mom has AD. I also needed a referral letter from him.

I immediately made an appointment for mom to see Dr Philip Poi of University of Malaya Specialist Centre (UMSC) on 30 May. He spent 45 minutes chatting with mom and putting her through some simple tests. Based on her answers and his observations, he confirmed that mom displayed early signs of AD. He wrote me a referral for ADFM. That was sufficient to get mom accepted as a client there. (That's the term used at ADFM.)

Mom with some of the table top games apparatus. There's also bingo and singalong sessions, but mom's favorite group activity is mahjong. She always wins, hands down.

Mom has been at ADFM's daycare centre for two months now. She no longer feels so lonely and bored. She now has something to look forward to each weekday - a place to go to where she can share stories with her new friends and enjoy activities tailored to her needs. This is important as AD patients need mental stimulation and social interaction.

My mom participating in the daily morning exercise session at the pavilion led by centre manager, Ms Jade Wong, who is also a nursing tutor.

 One of the staff members helping my mom with the hand exercises. Looking after the elderly can drain one's patience, many times more so when they have AD, but the carers at the centre have been wonderful.

Here's a pictorial tour of the ADFM facilities and services. For more details, please contact the centre manager Jade Wong or Janet who runs the secretariat at No 6, Lorong 11/8E, Section 11, PJ, tel: 03-7956 2008, e-mail: adfmsec@streamyx.com 

First impression counts when visitors step into the centre.

Reflexology path for the clients, with hand bar all along the side to prevent falls.

Exercise corner for those who enjoy cycling.

Some of the drawings done by the clients.

A daily schedule designed to keep the clients mentally and physically active - very important for people with AD.

Dining area with the kitchen in the background. The place is kept spotlessly clean. That speaks well of the staff.

The cosy rest room for the women should they want to lie down or take a nap. Spacious, clean and comfortable as a dormitory should be.

The men's rest room -  no pink sheets here,  but just as comfy and clean. As is the case in all nursing homes and daycare centres, there are more women than men, a clear indication that women enjoy a longer life span.

 A clean, odour-free bathroom cum toilet reflects well on the maintenance of facilities at the centre.

ADFM's other daycare centre is located at Taman Seputeh in Kuala Lumpur. It also runs a residential homecare centre at Telok Panglima Garang, Kuala Langat, Selangor.

 ADFM's homecare centre at Telok Panglima Garang, about 45 minutes' drive from KL.

The spacious hall with the dining area on the left.

 A choice of 6-bed, 3-bed, 2-bed or single-bed rooms to suit individual preferences.

Bathroom and toilet equipped with seat and grab bars.

If you are interested in finding out more about ADFM's residential homecare centre, you can contact Angela Lee at 03-3122 6908. You can also check out ADFM's website at http://www.adfm.org.my and ADFM's blog at http://adfmmalaysia.blogspot.com/

  ADFM's newsletter and pamphlet.

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15-MINUTE TEST TO KNOW IF YOU ARE AT RISK OF DEVELOPING ALZHEIMER'S

New Sunday Times 15 May 2011. (Click on all images to enlarge for clearer text.)

If you are in the 50-70 age bracket, this is one online test you want to try. I came across it in The New Sunday Times yesterday, and couldn't resist taking the test to find out if I am at risk of developing Alzheimer's.

Click here to take the test.

The test is a follow-up to the landmark Oxford University study published last year which credited a simple vitamin pill, costing only 50 sen a day, for reducing brain shrinkage linked to Alzheimer's by as much as 500%. It is a free test created by an Oxford team to enable people to find out if they have mild cognitive impairment (slight memory lapses) which can be an early warning of Alzheimer's.

My test results show I'm at low risk of developing Alzheimer's.

Do take the test. All you need is 15 minutes of uninterrupted time. The test is best done on a full screen, minimum screen size of 1024 x 768 pixels. You will require Javascript and a mouse for easy clicking. Doing the 4-part simple test is fun and mentally stimulating. You get the results instantly at the end of the test.

Just bear in mind that the test is not a diagnosis, but it does detect whether you are showing early signs of Alzheimer's. It is recommended that you take the test the following year to monitor your cognitive function. If your score puts you at risk, refer to the 10 Alzheimer's preventive steps, and take the necessary action.

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BABY BOOMERS = THE ALZHEIMER GENERATION

What diseases do doctors fear most for themselves? I posed this question to my mom's cardiologist at his clinic last week. Without hesitation he said "Stroke and dementia."

I don't have direct experience taking care of a stroke patient. But caring for my mother who has dementia has given me a first-hand look at what the disease does to a person. I agree with the doctor. I too pray I won't suffer this debilitating disease in my old age. A family member went as far as to say (and I quote from his text message) "Wouldn't wannna stay in body if brain functions impaired".

One of the most common forms of dementia is Alzheimer's Disease. It is a progressively degenerating disease that has no known cure at the moment. In Singapore, dementia is a time bomb that is waiting to explode. By 2020, an estimated 50,000 Singaporeans will have some form of dementia.

Several days ago I received an email from Diana Wright of Alzheimer's Association. Here's what she wrote:

"The good news is that death rates for many major diseases - HIV, stroke, heart disease, prostate cancer, and breast cancer - are declining. Sadly, we can't yet say the same about Alzheimer's. This year, the first of the Boomer Generation turns 65. To bring urgently-needed attention to the risk facing the Boomers, Alzheimer's Association recently released a groundbreaking study - Generation Alzheimer's: The Defining Disease of the Baby Boomers.

We'd love your help in getting the word out on SeniorsAloud about the important information in Generation Alzheimer's, so we can make sure the public understands what can be done to conquer this devastating disease."

While Alzheimer’s is not normal aging, age is the greatest risk factor for the disease. This report conveys the burden of Alzheimer's and dementia on individuals, families, government and the nation's healthcare system.

Do check out the related videos and links. Knowledge empowers, so please pass on the information to others. Let us help make a difference.

"Alzheimer’s Is Devastating, Deteriorating and Debilitating. Our vision is a world without Alzheimer's."

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PLANNING FOR RETIREMENT (Part 1)

Given that 9.5% of Malaysians will be above age 60 by 2020, the recent conference "Everyone Can Retire Well" couldn't have been more timely. Organized by the Financial Planning Association of Malaysia (FPAM), the event also included an exhibition and free talks for the public. 

A good turnout of participants from the government and corporate sectors, financial institutions, universities, real estate developers and the medical fraternity.

According to conference co-organising chairman and FPAM deputy president, Tan Beng Wah, there is currently no single umbrella body to coordinate the activities of all the different stakeholders in the retirement planning industry. The conference would provide a common platform for them to get together and discuss best policies to be implemented for the benefit of everyone.

A comprehensive list of topics from credit card management to investment in stockbroking. FPAM deserves a round of applause for taking the initiative to educate the public about retirement planning. (Click on all images to enlarge.)

The organizers also felt there was an urgent need to raise public awareness of the challenges that lie ahead not just for the country, but for the individual as well. To this end, a separate programme of free talks by established local and international experts was held in an adjoining hall. Although the talks were promoted in the print and e-media, the turn-out was small. A real pity as there was much to learn from the experts. Topics were wide-ranging, from investment opportunities to estate planning and retirement villages, to name a few.

One of several booths at the exhibition. This one offered free health checks.

The following screen shots are solely for educational purposes. Please visit the FPAM website for more infomation on the talks and the speakers.

Medical planning is an integral component of retirement planning. We tend to focus on financial planning, and forget that without good health, retirement can literally be much more than a pain in the neck.

Of what good is knowledge if we don't act upon it? If any of these health issues or medical ailments apply to you, seek expert advice.

The price to pay for ignorance or indifference.

The good doctor's recommendations.

Time for me to make an appointment. What about you?

Also speaking on the aspect of health concerns for retirement planning was Dato Dr Rajen, an authority in the field of alternative and traditional medicine. In his presentation he referred to osteoporosis as a thief as it steals the calcium from our bones, a racist as it favours Chinese and a bully as it picks on women who are smaller in frame than men.

His advice for strong bones - get at least 20 minutes of exposure to sunlight in the mornings or evenings. This is essential for our body's production of Vitamin D and calcium. If you are lactose-intolerant, take yoghurt or soy-based food products like tofu.

Next up was Dr Tanya Petrovich's talk on Alzheimer's Disease.

The statistics are alarming. There are brain exercises like Suduko, mahjong, crossword puzzles that can help keep the mind agile as we age. Like muscles, if we don't use our brain cells, we 'lose' them.

It's a relief to know that being forgetful is not necessarily a symptom of AD.

Alzheimer's Australia has come up with the Mind Your Mind booklet which you can click here to download for free. It gives tips on how to minimize the risk of getting dementia and AD.

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