Tuesday, 19 January 2016


In her articles, Angela Lunde of Mayo Clinic remarked that, for a long time I have said to caregivers "Blame the disease, not the person. It's a way to help caregivers separate the person with Alzheimer's disease from some undesirable behaviour, and to appreciate that the person with dementia is not intentionally acting bad or trying to upset, frustrate or annoy caregivers. I still maintain this notion, and certainly we should not blame the person for their disease. Yet, I want to be cautious that we do not simply dismiss or blame the behaviours on the dementia. To do so can have tremendous consequences on the overall well-being of the person with dementia, as well as to you, the caregiver."

It makes sense that behaviours such as agitation, yelling, hitting or  uncooperativeness are part of a brain dysfunction linked to dementia, but here's what we want to make clearer — dementia itself does not create these behaviours. The environment, physical discomfort (pain for example), our approach and communication style are just a few things that can have a person with dementia behaving in a particular way.

Dementia has been described as a type of disability where one's experience of the world is shifting over time, and that the distress or behaviours exhibited by a person with dementia are purely an expression of need. Most of us probably believe that much of human behaviour is motivated by specific needs that have to be met. Abraham Maslow, a psychologist, talks about basic human needs — food, warmth, sleep, safety and security, as well as higher order needs such as the need for affection, belonging, love and self-esteem.

A person with dementia has both basic and higher order needs, including those for social contact, physical touch, praise, and a sense of belonging, purpose and control. Yet for people with dementia, their ability to satisfy these needs on their own diminishes over time and can go unrecognized. And as persons with dementia lose their ability to communicate their needs effectively through words and language, overt behaviours fill the void. In other words, behaviour is communication.

Caregivers as well as doctors and other professionals tend to label behaviours with words such as difficult, disruptive or, worse yet will label a person with dementia as combative, resistive or challenging. Yet behaviours are simply communication tools when language and other means of coping are no longer available. I believe one of the best things we can do for a person with dementia is to shift our way of thinking and view behaviours as neither good nor bad, but as a bold sign that there is an unmet need that requires attention.

If you accept that, then we as caregivers (family, friends) can play an enormous role in easing (and preventing) distress for the person with dementia and ultimately ourselves. Teepa Snow, an extraordinary dementia education and care specialist said recently, "If we can help care partners see the 'behaviours' as the tip of the iceberg and as something to be curious about, to investigate and to explore, rather than to judge, then we can change the entire paradigm."

As a family or professional caregiver how do you begin to investigate, explore and figure out the unmet need? Family caregivers may have an upper hand here because they understand better than anyone the personality traits, life history and personal preferences of the person with dementia. This understanding offers important clues. Yet family members can also struggle the most because this shift requires letting go of the person as they once were, altering expectations and changing well established patterns of communication.

There are more insights as well as specific techniques and strategies for uncovering the message (unmet need) behind the behaviour.

It is important to see challenging behaviours as symptoms instead of problems. Think about this analogy: You have an infection and develop fever. The fever is a symptom of the infection. If we simply see your fever as the problem, we will only treat the fever. While this might reduce some of your discomfort for a time, the fever will eventually return and you will get worse because nothing was done for the real problem — the infection. Similarly, to better manage behaviour symptoms in a person with dementia, we need to uncover and address the real source of the problem.

As a caregiver this can seem like one more role to take on — that of a detective assigned to uncover the real problem. Yet the goal here is not to add more burden or pressure to the caregivers. If caregivers can identify triggers, learn some techniques and skills, and are willing to employ them, the result will be fewer unmet needs and consequently less behaviour that challenge and wear down caregivers. In this regard, the quality of life for the caregiver can improve.

Just what potentially are these unmet needs, the real problems? Unmet needs generally fall into one of three broad areas:

·           Personal health
·           Physical environment
·           Social environment

In other words, behaviours can be an expression of a health need or an outcome of the interaction between the person with dementia and their physical or social environment.

Let's start with physical health. Persons with dementia are often limited in their ability to identify, understand or articulate when they are in pain, feel uncomfortable, are sad or are disorientated due to physical limitations. The following represent some common health issues that are often overlooked in people with dementia as potential problems leading to behaviour symptoms:

·       Fatigue due to poor sleep.
·       Presence of a medical condition such as an infection (for example, urinary tract infection).
·       Clinical depression.
·       Vision loss or lack of proper eyeglasses.
·       Hearing loss or lack of working hearing aid (check batteries).
·       Constipation.
·       Dehydration.
·       Need to urinate.
·       Hunger.

It is important to always consider these and other health conditions that may be contributors to the behaviour symptoms. It would make sense that if a person is fatigued, hungry or in pain, and is unable to articulate or take care of the need independently, that they would express anger, agitation or even aggression.

Behaviour symptoms also can be related to the physical environment. We now understand how powerful environmental factors are in triggering behavioural symptoms. Individuals with dementia experience increasing vulnerability and a lower tolerance to stress in their environments. We may like to think of the environmental contributors to stress in persons with dementia in three areas: physical space, daily routine and structure, and sensory stimulation.

ü Physical space
The good news is that we, as caregivers, can use the environment to our advantage because we can control and modify the environment. This means that we can play a significant role in reducing environment-related stress. We can often prevent problems, and therefore behaviours, by creating a supportive environment. In addition, we can sometimes manage behaviour (unmet need) by altering the environment in some way.

As we think about how someone with dementia interprets and perceives their environment, we can make some basic modifications to help that person feel less confused and more in control.

Strategies such as placing a clock and calendar in plain sight, reducing clutter, and keeping household objects and furniture in the same places will reduce confusion and maintain a feeling of control. Displaying familiar objects and photographs will offer a sense of security. Labelling spaces with signs, pictures or colour arrows will help people with dementia find their way around the house.

ü Sensory stimulation
Ambiance, sound and light can all play a role in whether a person with dementia experiences a sense of calm or stress. Well lit spaces without confusing glares or shadows, low noise levels and generally quiet surroundings can reduce confusion and stress for a person with dementia.

Some levels of activity can be over-stimulating for person with dementia and a potential trigger for irritability. On the other hand, a person with dementia may be irritable because they are bored or lonely, and lack sensory stimulation. An environment that appropriately stimulates the senses, including sight, sound, taste and smell, offers a unique opportunity to ensure the overall well-being of the person with dementia (thus decrease behaviour symptoms).

The use of aromatherapy is a growing field of complementary therapy. Essential oils used in aromatherapy have been found to be safe and have shown some positive results for promoting a sense of calm and even reducing agitation.

Music has a way of having a positive impact on people with dementia. Certain types of music calm and relieve tension and anxiety, while other types of music can be uplifting and improve mood.

ü Daily routine and structure
People with dementia will benefit from routine and consistency. Keeping regular times for activities, such as waking up, mealtimes, bathing, dressing, exercising and bedtime, can help orientate the person and offer a sense of security. Similarly, offering cues to distinguish the different times of day can be done by opening the curtains in the morning to let the light in. An evening ritual like playing meditative music or the use of aromatic oils may help to signal the end of the day.

Sometimes, we simply cannot prevent behaviour but we can accommodate it instead. For example, wandering or pacing is common in persons with dementia and can be a symptom with many causes. Caregivers can accommodate this by creating a safe physical space where the loved one can pace or wander with minimal risk.

Dementia is clearly a condition where a person's ability to maintain his or her own well-being is compromised. This results in expressions of distress.

(Source:  Angela Lunde of Mayo Clinic)

Monday, 18 January 2016


Researchers find conditions such as high blood pressure, smoking may contribute to risk.

Psychosis, including delusions and hallucinations, affects about half of Alzheimer's disease patients and researchers have set out to clarify the link between these two conditions.

Canadian researchers said they found that cerebrovascular disease, a group of conditions that restrict the circulation of blood to the brain, appears to play a significant role in psychosis for those with Alzheimer's disease.

About 19 percent of people with Alzheimer's disease living in the community (rather than in a nursing home) have delusions. Another 14 percent have hallucinations, the researchers said.

Psychotic symptoms among people with Alzheimer's disease can cause added burdens on loved ones and caregivers. These symptoms can also speed up the progression of Alzheimer's disease, the study authors explained.

For the study, the researchers analyzed autopsy data from more than 1,000 people who had been treated at 29 Alzheimer's centers in the United States between 2005 and 2012. An Alzheimer's disease diagnosis can only be confirmed after death by autopsy.

The research team led by Dr. Corinne Fischer from St. Michael's Hospital in Toronto said that 890 of the study patients had been clinically diagnosed with Alzheimer's disease while still alive. Of those, nearly 730 had Alzheimer's disease that was confirmed by an autopsy, according to the report published on 5 January 2016 in the Journal of Alzheimer's Disease.

The autopsies revealed that those with confirmed Alzheimer's disease who had been diagnosed with psychosis didn't have more physical evidence of Alzheimer's disease in their brains (such as protein deposits).

Instead, the researchers were surprised to learn that risk factors linked to blood vessel problems such as, high blood pressure, diabetes and smoking history, appeared to be strongly related to psychosis.

Because researchers haven't known the underlying reason for psychosis in Alzheimer's disease patients, they've been limited in how well they can treat the issue, the study authors explained in a hospital news release.

(Source: Health Day -  St. Michael's Hospital, News Release, 5 January 2016)

Friday, 25 December 2015

SAT/16JAN16 ADFM Talk on "Dealing with The Elderly in Their Twilight Years" by Putri Juneita Johari

Dear All,

ADFM National Caregivers Support Network will be having a talk and sharing session on:
Dealing with The Elderly in Their Twilight Years” by Putri Juneita Johari, who is a caregiver and Columnist for “I, Caregiver” under the Sunday Life & Times Column of New Straits Times.


Day / Date:  Saturday, 16 January 2016
Venue:  ADFM PJ Day-Care Centre, No. 6 Lorong 11/8E, Seksyen 11, 46200 Petaling Jaya.

1.30pm    Registration
2.30pm    Talk “Dealing with the Elderly in Their Twilight Years” by Putri Juneita Johari
3.30pm     Q&A & Sharing Session
4.30pm     Light refreshment/End

Putri Juneita Johari will share with us, based on her background and vast experience, as a caregiver for her physically and mentally disabled son, elderly parents, a demented aunty and a columnist who has written more than 300 articles on topics pertaining to caregiving in all its various aspects that covered so many facets of caregiving.

For logistics arrangement, prior registration is required. 

To register, forward the completed Registration Form to jenny@adfm.org.my

Any questions, kindly call Jenny at Tel:  03 7931 5850 / 016 608 2513.

Thursday, 10 December 2015


Aphasia (ah-FA-ze-ah) is a language disorder that affects a person’s ability to communicate. "Aphasia" is a general term used to refer to deficits in language functions, such as speaking, understanding what others are saying, and naming common objects. It is caused by damage to the portions of the brain that are responsible for language.

Aphasia is not a disease, but a symptom of brain damage. The type and severity of language dysfunction in Alzheimer's disease is somewhat random, as it depends on the precise location and extent of the damaged brain tissue.

Alzheimer's Disease (AD) & Aphasia
Alzheimer's disease symptoms fall into two categories:

ü   Cognitive (Intellectual) Symptoms
ü   Psychiatric Symptoms

The Cognitive Symptoms include "The 4 Cognitive 'A's of Alzheimer's Disease". These are:

·                Aphasia
·                Apraxia
·                Agnosia
·                Amnesia

4 Types of Aphasia:
Generally, aphasia can be divided into four broad categories:

1.   Expressive Aphasia involves difficulty in conveying thoughts through speech or writing. The persons know what they want to say, but cannot find the words they need. Expressive aphasia may be non-fluent, in which case a person has trouble:

Ø   Finding the right words
Ø   Saying more than one word or phrase at a time
Ø   Speaking overall 

Another kind of expressive aphasia is fluent aphasia. Persons who have fluent aphasia may be able to put many words together. But what they say may not make sense. They are often unaware that they are not making sense.

2.   Receptive Aphasia involves difficulty understanding spoken or written language. The person hears the voice or sees the print but cannot make sense of the words.

3.   Anomic or Amnesia Aphasia is the least severe form of aphasia. In this type of aphasia, the person has difficulty in using the correct names for particular objects, people, places, or events.

4.   Global Aphasia results from severe and extensive damage to the language areas of the brain.  The person loses almost all language function, both comprehension and expression. They cannot speak or understand speech, nor can read or write.

Language Therapy can help and should be tailored to the individual needs of the person. Rehabilitation with a speech pathologist involves extensive exercises in which the persons read, write, follow directions, and repeat what they hear. Computer-aided therapy may supplement standard language therapy.

Care Tips:
There are simple ways to keep distractions and noise down, such as:

ü   Turn off background music, news or TV.
ü   Move to a quieter room.

Always assume that the person with aphasia is listening and understanding. Talk in adult language, never make them feel like children. 

If they cannot understand you, do not shout. Unless the person also has a hearing problem, shouting will not help. Make eye contact when talking to them.

When asking questions:

·                Ask yes/no questions.
·                Give clear choices for possible answers. Do not offer too many choices.
·                Visual cues help.

When giving instructions:

Ø   Break them down into small, simple steps.
Ø   Allow time for the person to understand. Sometimes this can be a lot longer than you expect.
Ø   If frustrated, consider switching activities.

Encourage a person with aphasia to communicate in other ways, such as:

v   Pictures
v   Pointing
v    Hand gestures

It may help everyone to have a book of pictures or words about common topics or people. This can make communication a lot easier.

Generally, it is a good idea to keep them involved in conversations. Check to make sure they understand, without pushing too hard or causing more frustration.

Do not correct when they remember a thing incorrectly.

When leaving anyone with speech problems by themselves, make sure they have ID with:

ü   Contact information of family members or caregivers.
ü   An explanation of their speech problem and basics on communicating.

Questions for your Doctor or Nurse:

Take a few minutes to write your own questions for the next time you see your healthcare provider:

ü   How long will I need therapy?
ü   Will my aphasia go away?
ü   How can I find a stroke or aphasia support group?

Care Tips:
How can family, friends and caregivers help?

A person with aphasia and family members will need the help and support of a doctor, counsellor and speech pathologist. It's a good idea for family and friends to:

Ø   Be open about the problem so people can understand.
Ø   Set up a daily routine for the person with aphasia that includes rest and time to practice skills.
Ø   Use sentences that are short and to the point.
Ø   Stand where the person with aphasia can see you.
Ø   Treat the person as an adult, keeping him or her involved in all possible routines. No one likes to be ignored. Include the person in your conversation.
Ø   Help the person with aphasia cope with feelings of frustration and depression.
Ø   Be patient with the person with aphasia. Give them the time they need to try to speak and get their point across to you. This respects their dignity.
Ø   Talk to your doctor, nurse or other healthcare professionals.

(Source:  Alzheimer’s and Dementia Weekly, 8 December 2015)

Saturday, 31 October 2015

7NOV15 and 21NOV15 - Two Days Dementia Care Training Workshop "Living with Dementia"

Alzheimer's Disease Foundation Malaysia (ADFM) will be conducting a Two-Day Dementia Care Training Workshop, comprising of 4-Modules, as follows:

Saturday, 7 November 15 - Module One & Module Two
Saturday, 21 November 15 - Module Three & Module Four 

Duration of Workshop:   8.30am to 6.00pm (8 hours each over two full days)

Venue:  ADFM PJ Day-Care Centre, No. 6,  Lorong 11/8E, Seksyen 11, 46200 PJ.

Group Size:  Limited to 20 – 24 participants only

Objectives:  This informative and interactive Training Workshop comprising of following 4 Modules is designed to equip the caregivers with a deeper understanding of dementia on a person-centered approach to care, practical skills in responding to and handling the different challenges, and to make a difference to the life of a person with dementia.

Module One - Understanding of Dementia
Module Two - Behavioural Effects of Dementia
Module Three - Effective Communication Skills
Module Four - Activities for Living and Pleasure

Workshop Leaders: 

(1)  Ms Sharon Soon, Nurse Consultant for Aged Care and Psychogeriatric Care, accredited Educator in Palliative Care Nursing.

(2)  Dr Elizabeth Chong, Geriatrician

(3)  Dr Khor Hui Min, Geriatrician 

Target participants:  Family caregivers and individuals caring for people with dementia. 

Certificate of Attendance:  Will be issued on request.

§  RM100  per participant for family caregivers   
§  RM150 per participant for other individuals

Registration:  Email completed Registration form to jenny@adfm.org.my.

Payment:  Payment can be by cash or cheque, and bank in direct to ADFM Bank Account with CIMB at Account No. 800 229 3277.  Email copy of payment slip to jenny@adfm.org.my for confirmation of registration and accounting record.   

More information:  Contact Jenny at Tel: 03 7931 5850 / 016 608 2513 or email jenny@adfm.org.my.

We look forward to having you at the workshop. 

Kind regards.

Sunday, 9 August 2015

7.30AM – 12.00PM
Lebuhraya Bukit Jalil, Bukit Jalil, 57000 Kuala Lumpur

Alzheimer’s Disease Foundation Malaysia (ADFM) jointly with Rotary Club Sri Petaling and University Malaya’s MeLor, and supported by Eisai Malaysia, is having a MEMORY WALK to commemorate the fourth global World Alzheimer’s Month in September this year under the Theme ‘REMEMBER ME”, to raise greater awareness of this rapidly growing disease and reduce the stigma that surrounds dementia.     

Based on UN statistical projections for Malaysia, the number of people with dementia will grow to over 261 thousand by 2030 and 590 thousand by the year 2050.  Current estimate of those affected is 123 thousand.

The Theme “REMEMBER ME” is dedicated to Caregivers and their loved ones living with dementia, and remembering those who have passed away. 

JOIN THE MEMORY WALK to raise public awareness of this crippling disease and reduce the stigma attached to dementia.  Alzheimer’s Disease (AD) and Dementia can affect anyone of us or our loved ones.


Warming Up Exercise by Jumpstart Fitness First
Flag 0ff – 2km for AD Persons, and 5KM for Public (No worries!  If you can’t complete the 5km Fun Walk, your support and presence is more important J
Collect Food and Drink
Free Health Screening by UMMC Geriatric Team of Doctors & Nurses together with Nurses from MNA UMMC Branch 
Zumba Exercise
End (those who wish to leave early, they can do so)

Confirmation of Registration:  Email the RegistrationForm to jenny@adfm.org.my for confirmation, on first come first-served basis. 

Registration Fee:  RM20 per participant.  AD Persons FREE. (First 500 participants will get T-Shirt, Cap, Goody Bag, Drink & Food).    

Payment:  Refers to Registration Form

Enquiry:  Contact Jenny / Michael at Tel:  03 7931 5850 / 016 608 2513 or Email: jenny@adfm.org.my.

Kindly help to circulate to all your family members, friends, business associates, senior community clubs and social network for support. 


Hurry, Sign Up Early !!
 See you at Bukit Jalil Recreational Park on 20 September soon !!!

Best wishes,
Memory Walk Organizing Team