Living with Alzheimer’s

Warning signs of dementia

Every September on Sept 21, people from all over the world raise awareness of and combat the stigma that surrounds dementia – Alzheimer’s disease in particular.

Numerous Alzheimer’s and dementia organisations hold memory walks, fundraisers, awareness-raising events, and campaigns to draw attention to persons in their community who are impacted by Alzheimer’s or other types of dementia in the weeks leading up to and on the day of the event.

The theme for World Alzheimer’s Month 2022 is ‘Know Dementia, Know Alzheimer’s. 
The theme is the same as in 2021. However, this year it pays attention to post-diagnosis support.

According to Alzheimer’s News Today, it is estimated that there are about 44 million people worldwide living with Alzheimer’s or a related form of dementia. 

In the US, an estimated 5.5 million people of all ages have Alzheimer’s. Of these, around 5.3 million are 65 and older and 200,000 are younger and have early-onset of Alzheimer’s disease.

About two-thirds of Americans with Alzheimer’s are women. This equals 3.3 million women, aged 65 and older having Alzheimer’s in the US and two million men.

Alzheimer’s disease and dementia are most common in Western Europe (with North America close behind) and least common in Sub-Saharan Africa. African-Americans are about twice as likely to have Alzheimer’s or other forms of dementia as whites. Hispanics are about 1.5 times as likely to have Alzheimer’s or other forms of dementia as whites.

Meanwhile, reports from the National Institute on Aging indicate that the prevalence of Alzheimer’s doubles every five years beyond the age of 65. As the population ages, the disease impacts a greater percentage of people. At present, someone in the US develops Alzheimer’s every 66 seconds. It is thought that by the middle of the century, someone in the US will develop the disease every 33 seconds and the total number of people with Alzheimer’s in the US could rise to as high as 16 million people by 2050.

COVID-19 and Alzheimer’s

Studies found that COVID-19 in seniors is linked to increasing Alzheimer’s risk. 

“A study using the electronic health records of more than six million Americans over age 65 found those who had COVID-19 ran a greater risk of receiving a new diagnosis of Alzheimer’s disease within a year,” according to a news report in Washington Post.

The study, led by researchers at Case Western Reserve University School of Medicine and published in the Journal of Alzheimer’s Disease, does not show that COVID-19 causes Alzheimer’s, but adds to a growing body of work suggesting links between the two.

The results suggest researchers should be tracking older patients who recover from COVID to see if they go on to show signs of memory loss, declining brain function or Alzheimer’s. 

The study found that for every 1,000 seniors with COVID-19, seven will be diagnosed with Alzheimer’s within a year, slightly above the five-in-a-thousand diagnosis rate for seniors who did not have covid.

What local experts say

Head of the Geriatric Unit in the Sarawak Heart Centre in Kota Samarahan, Dr Gary Tiong said that Alzheimer’s is the most common aetiology of COVID-19 infection that increases the risk of dementia or worsens pre-existing dementia. 

“Dementia in Sarawak is a concern even before the COVID-19 pandemic. 

“The COVID-19 pandemic just made it worse directly or indirectly for persons living with dementia and their caregivers,” he said. 

He added that awareness and services are there but are never enough to diagnose, manage and support the people living with dementia and their caregivers. 

“I hope the dementia action plan can be accepted and rolled out accordingly; improving the care for people with dementia needs collaboration from all stakeholders,” said Dr Tiong. 

Alzheimer’s disease: what is it?

According to Alzheimer’s Disease International, the most typical cause of dementia is Alzheimer’s. Memory loss, issues with thinking, difficulty solving problems, and language difficulties are among the signs of dementia, which is a group of symptoms. When certain disorders, such as Alzheimer’s disease, harm the brain, certain symptoms appear. 

A medical condition that affects the brain, Alzheimer’s is named after the physician (Alois Alzheimer) who first characterised it. 

Proteins accumulate in the brain during the disease to form plaques and tangles, two types of formations. As a result, connections between nerve cells are lost, which eventually results in nerve cell death and brain tissue loss.

Additionally, the brains of those who have Alzheimer’s lack certain critical molecules. These chemical messengers aid in the signalling process within the brain. Signal transmission is less efficient when there is a dearth of them. 

Chemical messenger levels in the brain can be increased with current Alzheimer’s disease treatments, which may help with some symptoms. The disease of Alzheimer’s advances as time passes. This indicates that more areas of the brain increasingly suffer damage over time. As a result, the symptoms get worse. Additionally, they get more serious.

Common symptoms of Alzheimer

While there are some common signs of Alzheimer’s disease, it’s crucial to keep in mind that each person is different. Unusually, two Alzheimer’s patients will have the same experience. 

Memory lapses are typically the first sign of Alzheimer’s disease. They can particularly struggle to remember recent events and pick up new knowledge. 

These symptoms manifest because the hippocampus – a region of the brain crucial to daily recall – is typically damaged early on in Alzheimer’s. In the early stages of the disease, memory of recent life experiences is frequently untouched.

Memory loss due to Alzheimer’s increasingly interferes with daily life as the condition progresses. The person may lose items (for example, keys, glasses) around the house; struggle to find the right word in a conversation or forget someone’s name; forget about recent conversations or events; get lost in a familiar place or on a familiar journey, or forget appointments or anniversaries.

Although memory difficulties are usually the earliest symptoms of Alzheimer’s, someone with the disease will also have – or go on to develop – problems with other aspects of thinking, reasoning, perception or communication. 

They might have difficulties with language; struggle to follow a conversation or repeat themselves with visuospatial skills; problems judging distance or seeing objects in three dimensions; navigating stairs or parking the car become much harder concentrating, planning or organising; difficulties making decisions, solving problems or carrying out a sequence of tasks (such as cooking a meal) orientation; and becoming confused or losing track of the day or date. 

A person in the earlier stages of Alzheimer’s will often have changes in their mood. They may become anxious, irritable or depressed. Many people become withdrawn and lose interest in activities and hobbies.

Later stages

As Alzheimer’s progresses, problems with memory loss, communication, reasoning and orientation become more severe. The person will need more day-to-day support from those who care for them. Some people start to believe untrue things (delusions) or – less often – see or hear things which are not there (hallucinations).

Many people with Alzheimer’s also develop behaviours that seem unusual or out of character. These include agitation (for example, restlessness or pacing), calling out, repeating the same question, disturbed sleep patterns or reacting aggressively. Such behaviours can be distressing or challenging for the person and their carer. They may require separate treatment and management of memory problems.

In the later stages of Alzheimer’s, someone may become much less aware of what is happening around them. They may have difficulties eating or walking without help, and become increasingly frail. Eventually, the person will need help with all their daily activities.

How quickly Alzheimer’s progresses and the life expectancy of the afflicted vary greatly. On average, people with Alzheimer’s disease live for eight to 10 years after the first symptoms. However, this varies a lot, depending particularly on how old the person was when they first developed Alzheimer’s.

Atypical Alzheimer’s

In some people with Alzheimer’s the earliest symptoms are not memory loss. This is called atypical Alzheimer’s. The underlying damage (plaques and tangles) is the same, but the first part of the brain to be affected is not the hippocampus.

Atypical Alzheimer’s is uncommon in those diagnosed when they are over 65. It accounts for around five per cent of all Alzheimer’s in this age group. It is, however, more common in people diagnosed when they are under 65 (early-onset Alzheimer’s disease). In this age group, it represents up to one-third of cases.

The atypical forms of Alzheimer’s disease are as follows:

Posterior cortical atrophy (PCA) occurs when there is damage to areas at the back and upper rear of the brain. These are areas that process visual information and deal with spatial awareness. This means the early symptoms of PCA are often problems identifying objects or reading, even if the eyes are healthy. Someone may also struggle to judge distances when going downstairs, or seem uncoordinated (for example when dressing).
Logopenic aphasia involves damage to the areas on the left side of the brain that produce language. The person’s speech becomes laboured with long pauses.

The frontal variant of Alzheimer’s involves damage to the lobes at the front of the brain. The symptoms are problems with planning and decision-making. The person may also behave in socially inappropriate ways or seem not to care about the feelings of others.

Who can get Alzheimer’s?

Most people who develop Alzheimer’s do so after the age of 65, but people under this age can also develop it. This is called early-onset Alzheimer’s, a type of young-onset dementia. In Malaysia, there are over 123,000 with dementia.

Developing Alzheimer’s is linked to a combination of factors, explained in more detail below. Some of these risk factors (such as lifestyle) can be controlled, but others (such as age and genes) cannot.

Age is the greatest risk factor for Alzheimer’s. The disease mainly affects people over 65. Above this age, a person’s risk of developing Alzheimer’s doubles approximately every five years. One in six people over 80 has dementia.

There are about twice as many women as men over 65 with Alzheimer’s disease. This difference is not fully explained by the fact that women on average live longer than men. It may be that Alzheimer’s in women is linked to a lack of the hormone oestrogen after menopause.

Many people fear that the disease may be passed down to them from a parent or grandparent. Scientists are investigating the genetic background of Alzheimer’s. There are a few families with a very clear inheritance of Alzheimer’s from one generation to the next. In such families, dementia tends to develop well before age 65. 

However, Alzheimer’s which is so strongly inherited is extremely rare. In the vast majority of people, the influence of genetics on the risk of Alzheimer’s disease is much more subtle.

Several genes are known to increase or reduce a person’s chances of developing Alzheimer’s. For someone with a close relative (parent or sibling) who was diagnosed with Alzheimer’s when over 65, their own risk of developing the disease is increased. However, this does not mean that Alzheimer’s is inevitable, and everyone can reduce their risk by living a healthy lifestyle.

People with Down’s syndrome are at particular risk of developing Alzheimer’s disease, because of a difference in their genetic makeup. For more information see Learning disabilities and dementia.

Treatments

There are drug treatment and non-drug treatments for Alzheimer’s. 

Besides that, it is beneficial for a person with Alzheimer’s to keep up with activities that they enjoy. Many people benefit from exercising their minds with reading or puzzles. There is evidence that attending sessions to keep mentally active is helpful (cognitive stimulation). s 

Life story work, in which someone shares their life experiences and makes a personal record, may help with memory, mood and well-being. As dementia worsens, many people enjoy more general reminiscence activities.

Over time, changes in a person’s behaviour, such as agitation or aggression, become more likely. These behaviours are often a sign that the person is in distress. These could be from a medical condition such as pain; because they misunderstood something or someone; or perhaps because they are frustrated or under-stimulated. 

Individualised approaches should look for, and try to address, the underlying cause. General non-drug approaches are also often helpful. 

These include social interaction, music, reminiscence, exercise or other activities that are meaningful for the person. 

They are generally tried before additional drugs are considered, particularly antipsychotics.

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