Dementia: Dispeling the myths, embracing the realities

Dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour. [iStockphoto]

Do you ever wonder why some people associate forgetfulness with age as if it's a natural part of getting older? Is grumpiness the norm as one ages? These are widespread misconceptions that may cause individuals to miss the warning signs of dementia, a disorder that affects millions of people worldwide.

Dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person's ability to maintain their activities of daily living.

The World Health Organization (WHO) reports that dementia is currently the seventh leading cause of death, with over 55 million people affected globally, and approximately 10 million new cases arising every year.

The Centers for Disease Control and Prevention (CDC) reports that the number of adults diagnosed with dementia is projected to be nearly 14 million by 2060.

Dr Tasneem Yamani-Nurani, a Geriatric General Practitioner highlights the need for improved preparation to deal with the expanding problem of dementia. In light of the growing older population worldwide.

"And we are included as Kenya. We are included in that, in the next 20, 30 years, there will be more older people than younger people," she says.

Dr Christine Musyimi, African Mental Health and Research Facility (AMHRF) researcher shares that currently, national prevalence data for dementia in Kenya is lacking. She mentioned that this data would be published in the coming months.

"The first thing to do is consider the statistics in Kenya, we lack data on the national prevalence, but there is a study we did in one of the counties, Makueni County, and estimate of among older people, not the general population because we looked at people that are 60 years and above," Dr Musyimi says, "We found that 18 per cent had probable dementia, some aspects of dementia, cognitive decline or cognitive impairment."

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According to WHO, dementia is caused by many different diseases or injuries that directly and indirectly damage the brain.

WHO lists Alzheimer's disease as the most common form that may contribute to 60-70 per cent of cases. Other forms include vascular dementia, dementia with Lewy bodies (abnormal deposits of protein inside nerve cells), and a group of diseases that contribute to frontotemporal dementia (degeneration of the frontal lobe of the brain).

"Dementia may also develop after a stroke or in the context of certain infections such as HIV, as a result of harmful use of alcohol, repetitive physical injuries to the brain (known as chronic traumatic encephalopathy) or nutritional deficiencies," the report further details.

Dr Musyimi explains that one early feature of Alzheimer's disease is forgetfulness or memory loss or interruptions. "But it doesn't mean that anyone who has forgetfulness or who has issues with forgetting or usual forgetting has dementia because you also need to look at other factors, for example, if the person can perform daily functions," he says.

Dr Yamani emphasises that dementia is not synonymous with Alzheimer's disease; rather, Alzheimer's is just one type of dementia.

"Understand that different types of dementia present in different ways," says Dr Yamani. "There is still a cognitive decline, but to identify which dementia it is becomes important."

One common misconception is that individuals with dementia have entirely unreliable memories. In reality, they may remember certain things but mix up details or recall events incorrectly.

Dr Yamani points out: "A lot of times they will remember you today, remember exactly who you are, mix up things about you, about your family, about space, and suddenly they can forget you. You assume it's accurate, but when you dwell on it, you'll realise it's not as accurate as you thought it was."

Inability to care for oneself

"When they have a problem with memory, they can forget the gas, they can forget that they have done something dangerous when it comes to medication they can forget they took medicine and double dose themselves," Dr Yamani elaborates.

She goes on: "They can go into a financial crisis because they keep misusing financial resources because they don't remember what they did, and usually that's one of the things people notice most or rather, that's when they realise that something is wrong."

Contrary to the misconception that dementia only affects the elderly, Dr Yamani highlights that it can occur at any age, albeit more rarely in younger individuals.

"It's very rare in young people, but it does occur, we call it Early Onset Dementia, it can happen to people as young as 40-45," she adds. "It tends to double after every five years beyond 65 years, so that makes age a risk factor rather than saying older people can get dementia because it can occur at any age including middle-aged, it can occur for children, but this is mostly when it is inherited," Dr Musyimi says.

However, ageing typically comes with natural changes, such as vision and hearing problems, slightly slower movements, and difficulty lifting heavy objects. These are considered normal aspects of ageing, and individuals should not be assumed to have dementia solely based on these changes.

Dr Yamani says, "Old people are just normal, functional humans. By the time they are not doing something correctly, something is amiss and it is good to identify that as it might be a problem, not old age."

Personality and behavioural changes are another critical aspect to consider. Changes like increased irritability or anger are not a natural part of ageing but could be indicative of dementia or depression.

Dr Yamani says "When someone is making irrational decisions or is angry all the time, you know the whole 'Grumpy old man' saying, that's not a normal thing. A grumpy old man is probably a sick old man, old people are not meant to be grumpy, they're actually meant to be very happy people."

"If you see behavioural changes, personality changes, lack of enthusiasm or interest in things or aspects of impulsive behaviour where someone says things without thinking about it, that would be frontotemporal type of dementia." Dr Musyimi says.

Education and understanding of dementia are crucial. Caregivers need to know what to expect and how the condition will progress over time.

Dr Yamani talks about the psychological anguish that carers go through when a loved one with dementia rejects them by declaring, "You're not my child." It might be upsetting to be rejected. She asserts that it's crucial to realise that this rejection isn't intended to be personal, though.

"But if you understand that this is not personal, that they will learn to love you again, maybe they'd never recognise you as their child but they will learn to love you because they will understand that you're there to care for them not to hurt them, they will become familiar with you. So you learn how to love each other in a new way," Dr Yamani explains.

Do not treat them like children

While they may exhibit childlike behaviours, striking this balance can be challenging but is essential for their well-being. "You have to allow them to be independent with assistance but not be in argument or correction mode with them because they don't usually know what they are doing," Dr Yamani says.

Societal Interaction

Societal interaction plays a significant role in the lives of those with dementia. Encouraging them to engage with the community and providing flexible and understanding support during interactions can improve their quality of life.

"Watching TV is not very interactive, you may think you're entertaining them but you're doing more damage than helping them because you need brain activity to slow down the progress." Dr Yamani says. "A lot of common things we ask people to do is involve themselves in art therapy, music therapy, these are the alternate activities because those are things that keep their brain engaged."

Normal socialising might look different for individuals with dementia, and caregivers should be prepared for this.

"You may not be able to do that so you have to learn to accept that socialising may mean just sitting there and holding their hand and telling them about your day with no response. For them that's a social activity, you may think you're not doing a lot but for them, you are." Dr Yamani says.

Home Safety

It's important to provide a secure atmosphere at home, which includes locking doors, properly storing sharp objects, and enabling people with dementia to roam around without restriction. Dr Yamani emphasises the importance of routine assessments that involve social, environmental, and psychological elements of treatment and the need to prevent restricting patients to a room or bed.

As other underlying problems can be missed while focusing only on dementia, carers must also pay attention to the physical health, medication administration, mood, hygiene, and nutrition of the person they are caring for.

"Most people forget that dementia has other conditions. In taking care of dementia, you forget this person is diabetic for example, so the physical condition is not taken care of. Dementia will never kill you, it's always the complications that will kill you," Dr Yamani says.

"In terms of pharmacological treatment, we have antipsychotics that can help the person to improve their memory and reduce any symptoms that the person is experiencing." Dr Musyimi says, "Also, making sure that the caregiver can access some form of support from the hospital to at least improve their mental health outcomes."

Dr Yamani acknowledges the emotional struggle of losing a loved one to dementia while being physically present. She advises changing one's perspective and finding a new way to connect and enjoy moments together.

"In five days, maybe you'll have one good day. Wait for that one good day instead of focusing on how difficult the past five days have been and making the most of that, that. That's what gives quality of life both to the patient and the caregiver," she says.

Dr Musyimi supports raising awareness and urging decision-makers to view dementia as a treatable disorder. "Just like HIV and malaria, although there's no cure for dementia. It's essential to provide treatment to improve the quality of life and mental well-being of those affected," she says.