Chinese courier takes elderly Alzheimer's mother on rounds with him because she cannot be left alone

A courier in southwest China has been taking his elderly mother along with him on his rounds for the past seven years to ensure she is looked after at all times.

Cai Yujun, 52, has modified his electric bike to ensure that his 92-year-old mother Yang Suxiu has a more comfortable seat on the back.  

He also uses a couple of ropes to secure her to the frame as he makes deliveries to computer shops in Chengdu, the capital of Sichuan province.

Yang was diagnosed with Alzheimer’s seven years ago and can longer take care of herself, according to the news website report.

“Mother has laboured her whole life for our family. So, no matter how hard life is, I cannot shirk my responsibility for taking care of her,” Cai told the website.

The pair have traveled to every corner of the city together, and the report said Cai always holds his mother’s hand when delivering products to prevent her from getting lost.

Cai’s colleagues and friends have also helped out by keeping an eye on her when she cannot follow her son into some of the buildings he visits.

“Many friends like to chat and joke with her,” Cai added.

(Source:  South China Morning Post, 18 April 2018)

AGING IN AGONY

YOU REALLY SHOULD KNOW WHAT IT FEELS LIKE TO GROW OLD  

TREAT OLDER PEOPLE WITH EMPATHY AND KINDNESS

Sharing with you the following extracts from the articles, Titled Aging in Agony on Elder Abuse and What does it feel like to grow old?, by S Indramalar in Star2 on 11 March 2016.

With his shoulders slumped, head hanging low and chin resting on his chest, Bernard Matthews is a shell of the man he used to be.

Up until a few years ago, the 82-year-old retired teacher used to read and write. A strapping man – he used to play hockey in his youth – Bernard would walk to the neighbourhood coffee shop to discuss current affairs and exchange “war stories” with his friends.

These days, he doesn’t say much. He shuffles and mumbles, and prefers to stay in his room.

He was recently diagnosed with depression and dementia, but his well-being deteriorated rapidly because he has been mistreated at home.

The verbal and emotional abuse started four years ago.

After Bernard lost his wife, his son and family moved in with him. Bernard thought their company would be good in his golden years.

He didn’t expect to be bullied.

It was his house but Bernard was made to feel like he was invading “their” space. He was yelled at for every little thing: forgetting to turn the TV off, not folding his towel or even watching “too much” television. He was accused of being a “burden” even though most of his pension went towards household expenses, called a “nuisance” and was constantly belittled.

All this began to eat away at Bernard. Bit by bit, he became withdrawn and depressed. He stopped going for his walks.

A concerned neighbour alerted the police and two officers came to check on him in his house in Labu, Johor. After assessing the situation, one of them discreetly advised Bernard to file a report of abuse.

For the first time, Bernard felt he could do something about his situation. He called his daughter who lived in Kuala Lumpur and they went to the police station where Bernard shared about the abuse he’d been suffering.

The police said they’d help him get a protection order from the courts. But at the last minute, Bernard backed down.

“He is my son. I don’t know why he is like this but he’s my son,” Bernard told his daughter. He also refused to move in with her because he didn’t want to leave his own house.

Elder abuse is a growing problem in Malaysia’s fast-ageing society but it is a crime that is grossly under-reported. Just like domestic violence, most view it as a “family matter” that is best dealt within the family.

Elder abuse, as defined by the World Health Organisation, is a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person.

The country also needs to re-examine its laws to ensure the elderly are not vulnerable to abuse.

Thus far, the assumption is that the elderly will be well cared for in their golden years because filial piety is a trait most Malaysians are brought up with.

It is, however, not a value everyone subscribes to. The hard reality is that government health and social services must play their roles in protecting the elderly from abuse or mistreatment. Presently, there are no specific laws to ensure elderly care, what more protect the elderly from abuse. The welfare of elders comes under the purview of the Penal code and the Domestic Violence Act.

Doctors, social workers and other frontline responders now do not have clear guidelines on handling elder abuse.

“We found that most primary care doctors and nurses have had no training on handling elder abuse cases and rely on the guidelines that we have on child protection. Without any clear guidelines when it comes to elder abuse, most said they were just guessing and didn’t know what they should do,” says Universiti Malaya’s Department of Social and Preventive Medicine lecturer Assoc. Prof. Dr Noran Naqiah Hairi. She is leading an ongoing study – called the Prevent Elder Abuse and Neglect Initiative (Peace) – with her colleague Dr Clare Choo.

Consultant Geriatrician, Dr Rajbans Singh concurs, pointing out instances when social workers wanted to remove the elderly from an abusive environment but had nowhere to place them.

“So, what do doctors do? Do we call the police? We are not clear on the protocol related to elder abuse. When it comes to children, the SOPs are clear as we have the Child Act, but not so with elderly patients."

“At present, what we do is talk to the family members and try to counsel the caregivers and discuss problems they may face,” he says.

He stresses that while we may want to believe that as an Asian society we will look after our elderly, we need to accept our changing society and prepare for the future.

One of the contributing factors to elder abuse cases, says consultant geriatrician Dr Rajbans Singh, is a lack of awareness, knowledge and understanding about elderly care and support.

“In my 20 years as a geriatrician, I have come across many cases. A lot of the times, the abuse occurs not because the carers or family want to intentionally hurt or harm the older person but because they do not know how to care for the elderly."

“It’s different with children, where you are in charge and you can set the rules. With the elderly, they can make up their own minds. We have to remember that these older people were once ‘somebodies’ – they were the head of households, they were professionals or had jobs and were depended on for many things. But, the roles have now changed and that’s not an easy thing to deal with,” explains Dr Rajbans.

"Things get more challenging if the older person is no longer alert because of Alzheimer’s or dementia, diseases that correspond largely to ageing."

“Emotional and psychological abuse is very common especially if the patient (older person) has dementia. Many carers really don’t understand the nature of the disease and don’t know how to deal with someone with dementia,” says Dr Rajbans.

He shares his childhood experience of dealing with the elderly.

“My grandfather had dementia. At the time, I was quite young… I wasn’t a doctor yet. He would just walk out and talk about things that didn’t make sense to us. Sometimes, he would go to the road outside our house and take a leak. I remember my cousins would get very upset with him. They took his actions personally, as if the old man was out to make things difficult for them on purpose.

“What we didn’t understand at the time was that he was suffering from dementia. It was only years later when I became a doctor did I understand his behaviour at the time,” he shares.

"However, as important as it is for caregivers to empathise, it is also crucial for them to have a support system to lean on."

“Most families think about the welfare of the older person so much, they forget about the carer. In many families, the responsibility of caring for the older person falls on the shoulders of one child or one sibling."

“The others may contribute financially or occasionally, but the responsibility is largely on one person. It can take a heavy toll, especially if the elderly person is not well."

“The carer’s life now is centred around this older person. After some time, with no support or help, he or she may find it hard to cope and that is when the abuse starts – by taking out the stress on the elderly person,” says Dr Rajbans.

When it comes to caring for the elderly, families need to come together and support each other.

“If it gets too stressful, caregivers can hire private nursing help for a few hours every week just to allow them some time to do their own thing. Or, find suitable day-care facilities that are comfortable for the elder persons and allow them to meet and talk to their peers, while giving caregivers some time for themselves,” suggests Dr Rajbans

Presently, senior citizens (60 and above) make up 9% (2.77 million) of the country’s 30.49 million population. This figure is expected to shoot up to 15% by 2030.

The existing support services aren’t enough to cope with the current ageing population, let alone the surge in less than 15 years.

Something needs to be done, says Consultant Geriatrician, Dr Rajbans Singh.

“We currently have 20 geriatricians in the country. Singapore has a much smaller population and they have about 100. In many countries, geriatrics has become one of the largest (area of) specialisation as they know they are dealing with an aging population. We need to catch up,” he says.

“An ageing society is our reality. Everyone is busy with their careers or living abroad. We have to think of putting in place support services – community nursing homes and day-care centres, community nurses and so on. “It’s not too late, but we have to act quickly,” he says

.

(Full Text – star2@thestar.com.my, 11 March 2016)

HOW TO GET RELIEF FROM SUNDOWNERS SYNDROME

Dear Caregivers,

Useful tips from Alzheimer Support @SandyAlz.

When my Mom had Alzheimer’s, Sundowners Syndrome could make bedtime a nightmare.

Late evening was a dreaded time for my Mom. Some evenings she would fall asleep as soon as her head hit the pillow. But, more often than not she would begin to cry only hours before bedtime.

A gentle weeping at first would turn into a very sad, groan then escalate to a loud sobbing wail that filled the house.

It didn’t happen every night, but it happened often enough to ask the doctor if there was something wrong and what on earth could I do.

Some antidepressants cause anxiety and irritation and keep them awake rather than help them to sleep. Mom seldom took more than a mild antidepressant at night as we hoped for a sound and restful sleep.

Despite all our efforts, several nights a week, Sundowners Syndrome haunted Mom. Her wailing cry was unnerving. It almost sounded like someone in horrific emotional pain. If you’ve ever heard a mother weeps from the death of a child, that is exactly how my Mom sounded on many nights. She wouldn’t walk or flail, but sit on the side of the bed and weep into the darkness.

Mom took a light medication to help her sleep, but remained alert during the day. Most often, she had really good days.  It was only the evening hours that brought nightmares while she was wide awake.

A few things I did find to help during those Sundowners Syndrome Nights:

·                Keep the last meal of the day fairly early, usually before 5 pm.

·                Take an afternoon walk, so Mom would be ready to settle down.

·                No naps during the day, as that prevented sleep at night.

·                For an hour or so before bed time, Mom would wind down from her daily activity.

·                She’d be drowsy and perfectly happy to go to bed with a little warm milk.

Sometimes these small activities would do the trick and she’d sleep soundly.

Though no one really knows for sure what causes it, Sundowners is common among those with dementia.

Some behaviours during Sundowners include: shouting, wandering, expressing fear, sadness, crying and anxiety.

Since the cause of Sundowners is unknown, many think it might have something to do with the body’s natural cycle or Circadian Rhythms (natural sleep/wake cycle). The longer they’ve had dementia, the deeper is their confusion.  It seems to occur as they begin to sleep more and stay awake less.

A few other recommendations I’ve learned since my Mom passed away 7 years ago are:

·              Shadows seem to bring them a lot of fear, so try for a well-lit atmosphere as much as possible. 

·              Make sure they get lots of exercise during the day, so sleep-time comes more naturally. 

·              Keep caffeinated beverages or foods to a minimum as they too can keep them awake. 

·              Playing soft music also helps them to stay asleep and if they need to get up for bathroom time in the middle of the night, be certain the bathroom is well-lit. 

·              Touch-base with their doctor. Let them know about the issue and ask for suggestions, perhaps a light sedative or check on the medications they are already taking, could one of them been keeping them awake?

All the best to those caring for someone with Sundowners Syndrome. If you find something that helps or would like to share something you’ve learned. We’d love to hear from you.

(Source:  Alzheimer Support @SandyAlz) 

NEGATIVE BEHAVIOURS MAY SIGNAL UNMET NEEDS

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.

PERSONAL HEALTH

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.

PHYSICAL ENVIRONMENT

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)

WHAT IS APHASIA: WORD JUMBLES IN ALZHEIMER'S DISEASE

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.

Therapy:

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)