Overcoming the challenges of Alzheimer’s in Oman

T-Mag Thursday 26/September/2019 11:44 AM
By: Times News Service
Overcoming the challenges of Alzheimer’s in Oman

“Never judge a book by its cover. It’s what’s on the inside that really matters.”
Few phrases ring as true or as strong as the one above, and with good reason. We live in a world where we are increasingly judged on the basis of how good we look, and not the good that we do.
After all, if a package is decorated wonderfully, it is quite easy to distract someone from what’s on the inside. Perhaps the same is true in the world of medicine as well. Physical ailments, after all, are far easier to diagnose and treat because they are easy to identify.
But it is difficult to map the boundaries of one’s mind, because it is constantly expanding, and it is equally tough to know how one explores the human mind. How do you therefore explore something that you cannot see? That is among the main challenges facing mental health experts, who have called for more tolerance and understanding to be shown to suffer with mental challenges and disabilities.
On the occasion of World Alzheimer Month, which runs throughout September 2019, T Weekly spoke to mental health professionals in Oman about what it is actually like to live with Alzheimer’s, the care opportunities afforded in Oman to those who have the disease, and the challenges and attitudes posed to them by society.
Dr Hamed Al Sinawi is the chairman of the Oman Alzheimer’s Association and is also a senior consultant in old age health and a psychiatrist at Sultan Qaboos University Hospital. A Fellow of the Royal College of Psychiatrists from the UK, Dr Sinawi has been treating Alzheimer’s patients in Oman for decades.
“Alzheimer’s is a type of memory disorder that belongs to a group of conditions known as dementia. Alzheimer’s disease was named after the German neurologist, who was the first to study a patient who exhibited forgetfulness, mood changes and confusion, he explained.
“Alzheimer’s is a caused by damage to the brain, which affects people’s memory, speech and ability to make decisions.
“Early symptoms include forgetfulness which manifest in the form of misplacing your keys, forgetting an important appointment, or being unable to remember the name of an old colleague or a distant relative,” he added. “It also includes forgetting which words to use during a conversation and getting lost in familiar places. Such symptoms have significant impact on people’s lives.”
Another organisation that is helping with spreading awareness over Alzheimer’s are the ‘Psychology of Youth’ volunteering team, a group of young mental health professionals that aim to provide care, assistance and advice to those who need help dealing with and/or understanding mental health issues.
The team, along with the Oman Alzheimer’s Association, recently held a symposium which looked into the challenges faced by caregivers and the mental and physical stress they went through — an important subject of discussion that is sometimes overlooked in all the focus that is rightly and necessarily afforded to those who have Alzheimer’s disease.
However, it is also important to address the concerns and the stresses that are faced by those who are there alongside them, so that they receive round-the-clock care, as well as immediate attention whenever necessary.
“This symposium shed light on caregivers’ points of view and their mental health, in addition to looking at the public view and opinion of what Alzheimer’s is,” said Abeer Abdullah Al Mujaini, the co-founder of the team.
“We also addressed what we, as the youth, try to envision what care looks like in terms of what is available to those who have Alzheimer’s, in the next 10 years. We will ask the youth to set up initiatives that can help in this regard. The speakers there were mostly doctors and from our team.
“We had caregivers there as well – two caregivers talked about their experiences of taking care of those with Alzheimer’s, and we played a video that showcased public opinions of this condition,” she added.
“Some of the caregivers we wanted to invite are too shy to speak in public, so we asked them to send voice messages through WhatsApp, and we put all of this into a video.”
While Dr Al Sinawi shed plenty of light on what it is actually like to live with Alzheimer’s, Abeer described just what it was like to care for a person who suffered from the condition. Although they described this in great detail, it still only goes a small way towards understanding what it is truly like to both suffer from Alzheimer’s, as well as provide support to those who do.
It is difficult to understand another person’s problems until we have suffered them ourselves, and the same holds true for both Alzheimer sufferers and Alzheimer caregivers.
Events like this symposium and other activities that help spread awareness go a long way in bridging the gap between misconceptions and understanding of conditions such as Alzheimer’s.
“Specialist in the field of Alzheimer’s have developed early warning signs that can alert people towards indicators over something being wrong and it is advisable to seek help so that a diagnosis can be made,” said Hamed Al Sinawi.
“We recommend early diagnosis as it has many advantages. Firstly, it gives people answers to what they see as disturbing behaviour from their loved ones, especially when that person becomes confused and easily irritated or when he/she asks the same questions over and over again.”
“This can be frustrating to the family members, as well as persons with Alzheimer’s,” he added.
“When diagnosis is made, the family will get information on how to deal with the person with Alzheimer’s in a respectful and acceptable manner. The second advantage is that when diagnosis is made early, the patient is more likely to benefit from medications that can slow down the progression of the illness, or protect them from further harm. They sometimes for become unable to differentiate between different banknotes, or are more prone to causing accidents since one of the main symptoms of Alzheimer’s is confusion and forgetfulness,” he said.
Explaining the burden placed on caregivers, a concern that is often not provided as much attention or awareness, Abeer Al Mujaini said, “It takes a lot to deal with a person with Alzheimer’s. The burden of responsibility normally falls on the elder child, but the tasks need to be delegated to others as well. There is also a lot of guilt that caregivers and family members sometimes face, because they wonder if they are doing enough, and as the disease advances, the people who have Alzheimer’s unfortunately become more and more dependent on these caregivers. They therefore become more house-bound is there is a lot of stress and anxiety on the part of the caregivers to take care of them properly.”
She added, “It takes quite a toll because it is the caregiver’s responsibility to ease their lives. They need to provide some form of cognitive stimulation and that takes up a lot of energy. They must also be alert and surveil the house for any dangers that a person with Alzheimer’s might face. It is only normal to be extremely saddened, especially if their mothers or fathers are the ones suffering from Alzheimer’s because no child will want to see their parents forget their name or forget who they are. To see that takes up a lot of mental strength and requires plenty of psychological strength to witness that. Their parents essentially become like their children because they are so dependent on them, and this is never easy to take in.”
With mental conditions and ailments, there are unfortunately social stigmas that are formed due to a lack of awareness and understanding about the causes of these diseases and how they manifest themselves. Physical complaints are far easier to spot and diagnose – a stomach ache, for example, will always present itself a certain way, a fever will always have similar symptoms – and because these ailments are fairly common, and because we’ve all had them at one point or another, it is easy for us to understand the relatively simple discomfort of a stomach upset.
However, a combination of a lack of awareness, a comparatively less widespread presence of mental illnesses, which leads to less available documentation, and an effort made by families to sometimes shield those members who have such mental illnesses, either in an attempt to protect them from social ridicule, which unfortunately happens to these poor souls, or to avoid embarrassment to the family themselves, which is a more selfish reason for doing so, or to protect the person who suffers from mental illness from inadvertently causing harm to himself and others, there is less understanding of the problems caused by mental illness.
Should you, for example – and we’ve all been here – meet a child or adult with a mental illness, on the basis of the manner in which they interact with this person, people can be classified into three broad categories.
The first group of people will largely ignore the person, treating him or her as they would anyone else.
The second will make it a point to be more inclusive, and ensure that this person is also involved in as many things as is possible.
The third, however, will act like he carries some sort of highly contagious disease, and will make it a point to avoid him, going so far as to keep away from him. It is this third group of people that by far display the most ignorance, through whatever design that may be, and it is these people who need to be made aware.
“Unfortunately a lot of people consider forgetfulness and all of that to be a normal part of ageing, but this is actually an abnormal part of ageing,” said Abeer Al Mujaini of the Psychology of Youth volunteering team.
“Not everyone who is facing forgetfulness has Alzheimer’s. Ageing is a basic human process, but a lot of people feel that Alzheimer’s is a regular part of ageing. It is not. This is why people will not take their parents to the doctor for a diagnostic session because they believe that what is manifesting itself as forgetfulness is just part of ageing when it could be something much worse.
Dr Al Sinawi added, “A lack of awareness over mental health problems and Alzheimer’s is a global phenomenon. This could be because people with such conditions behave in such a way that is embarrassing to the person and her family. Often, a person with mental illness such as depression can suffer in silence without telling anyone, whereas people with physical conditions are easily noticeable.
In some societies, there are common misconceptions about Alzheimer’s and other mental illness, because some people believe this is caused by black magic and they forget this is a normal part of ageing.
“Dealing with a person who has Alzheimer’s can be stressful and frustrating,” he said.
“Therefore, it’s important to read about how to go about it properly. Ask the doctors, read more to make yourself more aware, and talk to other caregivers. It’s important for you to look after your own health and mental wellbeing. Ask other family members to help you as this will prevent you from getting burnout. Remember that your loved ones with Alzheimer’s disease have an illness and they are not being difficult on purpose. Learn how to communicate properly and give them some tasks to do at home to keep their brain active.”
To counter this, Alzheimer’s organisations in Oman have embarked on a number of awareness courses to help dispel the myths and stereotypes about this condition, in an attempt to break the prejudices one might have against it. In addition, more facilities are being set up to admit those who have Alzheimer’s, so that they can come in for a checkup and diagnose the disease early.
“As doctors, we are based at the memory clinic at Sultan Qaboos University Hospital and we accept patients from all over the country,” explained Dr Al Sinawi. “We offer diagnosis and treatment along with support and health education to patients and caregivers.
“We also have support groups for the caregivers to help them exchange ideas about how to care for a person with Alzheimer’s through the different stages, and how to handle their feelings of frustration as they see the person getting worse gradually with time.”
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Understanding Alzheimer's
Alzheimer’s disease is the most common occurrence of dementia, a mental condition that includes a broader spectrum of ailments, all of which have to do with memory loss and deteriorating mental functions and abilities.
The symptoms of dementia are also the symptoms found in Alzheimer’s, and the World Health Organization has subdivided them into three categories – early, middle and late stage symptoms.

Early stage: the early stage of dementia is often overlooked, because the onset is gradual. Common symptoms include:
• Forgetfulness
• Losing track of the time
• Becoming lost in familiar places

Middle stage: as dementia progresses to the middle stage, the signs and symptoms become clearer and more restricting. These include:
• Becoming forgetful of recent events and people’s names
• Becoming lost at home
• Having increasing difficulty with communication
• Needing help with personal care
• Experiencing behaviour changes, including wandering and repeated questioning

Late stage: the late stage of dementia is one of near total dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious. Symptoms include:
• Becoming unaware of the time and place
• Having difficulty recognising relatives and friends
• Having an increasing need for assisted self-care
• Having difficulty walking
• Experiencing behaviour changes that may escalate and include aggression

There are many different forms of dementia. Alzheimer’s disease is the most common form and may contribute to 60–70 per cent of cases. Other major forms include vascular dementia, dementia with Lewy bodies (abnormal aggregates of protein that develop inside nerve cells), and a group of diseases that contribute to frontotemporal dementia (degeneration of the frontal lobe of the brain). The boundaries between different forms of dementia are indistinct and mixed forms often co-exist.
Worldwide, around 50 million people have dementia, with nearly 60 per cent living in low and mid-income countries. Every year, there are nearly 10 million new cases. The estimated proportion of the general population aged 60 and over with dementia at a given time is between five and eight per cent.
The total number of people with dementia is projected to reach 82 million in 2030 and 152 in 2050. Much of this increase is attributable to the rising numbers of people with dementia living in low and mid-income countries.

Treatment and care
There is no treatment currently available to cure dementia or to alter its progressive course. Numerous new treatments are being investigated in various stages of clinical trials. However, much can be offered to support and improve the lives of people with dementia and their carers and families. The principal goals for dementia care are:
• Early diagnosis in order to promote early and optimal management
• Optimising physical health, cognition, activity and well-being
• Identifying and treating accompanying physical illness
• Detecting and treating challenging behavioural and psychological symptoms
• Providing information and long-term support to carers.

Risk factors and prevention
Although age is the strongest known risk factor for dementia, it is not an inevitable consequence of ageing. Further, dementia does not exclusively affect older people – young onset dementia (defined as the onset of symptoms before the age of 65 years) accounts for up to nine percent of cases.
Studies show that people can reduce their risk of dementia by getting regular exercise, not smoking, controlling their weight, eating a healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels, Additional risk factors include depression, low educational attainment, social isolation, and cognitive inactivity.