Alzheimer’s and other forms of dementia come with many damaging misconceptions.
Here are a few myths to be aware of when you or someone you love is diagnosed with dementia.
Dementia: An overview
Dementia is a common condition which becomes more prevalent as we age. It is characterised by cognitive impairment and memory loss, and is a chronic, degenerative condition. That means that it tends to get worse over time.
At least 55 million people worldwide are suffering from dementia, and an ageing global population means that that number is only going to rise. Around 10 per cent of over-60s in Singapore have a form of dementia, and that proportion rises with age.
Alzheimer’s is the most common form of dementia worldwide, but vascular dementia follows a close second in Singapore. Dementia in Singapore seems to affect people from different ethnic backgrounds equally.
Although common, dementia is often misunderstood and sometimes quite a taboo subject.
Significant cognitive impairment makes communication difficult at times, so some people may naturally feel awkward or uncomfortable around people with dementia.
This also means that there are many myths and misconceptions around dementia, and we at Homage are here to bust some of those myths.
Myth 1: Dementia is a normal part of the ageing process
People of any age can experience the occasional lapse in memory; we’ve all mislaid our keys or had moments of forgetfulness.
These do tend to become more common as we age, and some medications used to treat those conditions.
Having the serious memory problems, cognitive impairment, and changes in mood and personality that come with dementia, however, are not a normal part of the aging process, and dementia is a specific medical condition which should be treated as such.
Ignoring symptoms of dementia and assuming they’re a normal part of the aging process are one of the reasons people might have a delayed or missed diagnosis, and getting support early is very helpful for people with dementia and their loved ones.
Myth 2: Dementia only affects the elderly
The World Health Organization (WHO) estimates that around nine per cent of people with dementia began to experience symptoms before the age of 65, which is known as early onset dementia.
It can happen to people in their 30s, although the incidence of dementia does increase sharply after the age of 65, and continues to affect more and more people with increasing age.
When we talk about a condition affecting someone, we should also consider the people who are affected by a loved one having a diagnosis of dementia.
Caregiver fatigue is a very serious and common occurrence for people who care for someone with dementia, and it’s important to know that there’s help at hand, and asking for support is a responsible, sensible thing to do.
Myth 3: Dementia only affects the mind
Dementia is a neurological disease, but as it progresses to later stages it can affect almost every part of the body. People who have dementia often develop problems with caring for themselves, in the middle stages.
Their mobility can suffer, and they become more at risk of falls. Having memory problems makes it more difficult to remember whether or not you’ve taken any regular medications you might be on, so dementia can indirectly affect a person’s ability to manage any other conditions they have.
In the middle stages of dementia it can become more difficult for a person to do essential tasks like shopping, cleaning, and preparing food so their health and quality of life can suffer.
People with dementia are often less able to get out and about, and suffer the effects of isolation, depression, and reduced exercise.
As dementia progresses into the later stages, it affects more and more of a person’s ability to take care of themselves, and people with advanced dementia are likely to need personal care, whether that’s from a family member or friend, or a formal care package.
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People with late stage dementia may begin to have problems with movement, continence, constipation, nutrition, hydration, and immobility-related conditions like muscle wastage and damage from moisture or pressure.
Swallowing difficulties are common towards the end stages of dementia, and people with swallowing problems are at risk of aspiration pneumonia.
This is a condition where some food or fluid accidentally enters the windpipe and lungs instead of being swallowed effectively and entering the stomach. Dementia-related pneumonia is the most common cause of death in people with dementia.
A diagnosis of dementia is a diagnosis of a disease that will lead to the end of your life, unless another condition causes you to deteriorate sooner. It may not be the condition a person dies of, but a person with a dementia diagnosis is likely to have a shorter life expectancy than someone without dementia.
Myth 4: Dementia is curable
There are some treatments to help manage or slow the progress of some forms of dementia, but there is no "cure" for dementia. Dementia progresses at a different rate in different people, but it is progressive and inevitably degenerative.
However, research into treatment for dementia is ongoing, and new treatments are being developed all the time.
The earlier dementia is diagnosed, the more effective some of the treatments are at slowing progression of the disease so it’s important to see a doctor and get the proper assessments, investigations, diagnosis and treatment.
Some symptoms that can point to dementia may also indicate other conditions so getting medical advice as soon as possible is essential.
Myth 5: People with dementia should always be reminded of the "real world"
Every person and every experience of dementia is different, and how much a person should be reoriented depends on the individual and the circumstance.
It might be appropriate to reorientate someone with dementia to their surroundings, especially in the earlier stages when they may have a reasonably good ability to retain and process information.
On the other hand, there are situations where it may be upsetting and harmful to continually remind people of their dementia and their waning mental capacity.
If a person with dementia, for example, repeatedly asks for a family member who has passed away, the way one might deal with this really depends on their ability to retain short-term information.
We’re conditioned to want to tell people the truth, but repeatedly reminding someone that their loved one has died can actually be cruel; if they forget it moments later, you can end up traumatising them again and again.
Remember that every time they hear a piece of bad news, it is exactly the same to them as if it is the first time they’ve heard it.
Myth 6: People with dementia should never be reminded of the "real world"
Again, it’s an individual call, and it depends on the person and situation.
Some people may find it comforting to be reminded that they’ve been having some bother with their memory or not really feeling themselves recently, especially if they’re able to process that information and it helps them understand why they’re feeling the way they are.
If someone can be easily reoriented to the real world that can be helpful for their understanding and awareness of the situation they’re in.
Myth 7: Dementia affects men and women equally
Women are overall more likely to develop dementia than men.
It’s not completely clear why this is, but is partly due to the fact that women live longer and dementia becomes more common with advancing years; in other words, women are more likely to survive to develop dementia, whereas men may die earlier from other conditions.
Men and women are more or less equally affected by dementia in earlier years, and the gender gap in incidence of dementia increases with increasing age.
Women are also more likely to be affected indirectly by dementia, as the burden of caring for people with dementia still tends to fall to female family members.
A large proportion of formal care workers are also women, so women are more likely to be involved in dementia care both in a professional and a personal capacity.
Myth 8: A family history of dementia means I will get dementia
Most forms of dementia are not predictable and even with a strong family history, you are not at a significantly increased risk of developing dementia.
There are some forms of dementia which do have a genetic element to them, but most forms of dementia are more influenced by other factors and other conditions than by genetics.
Some of the factors that can make a person more likely to develop some kinds of dementia can even be prevented or managed, such as some risk of vascular disease.
In short, it is absolutely not a foregone conclusion that you will get dementia if you have a close family member with the condition.
Myth 9: People with dementia get violent
Dementia can be incredibly frustrating and frightening to the sufferer; and also to their loved ones and carers. Sometimes, dementia causes changes in a person’s personality, which may be permanent or may come and go.
Some people with dementia do have physical expressions of their frustration or personality and mood changes and "lash out" at those close to them. This can be very upsetting for everyone involved. Personality changes in dementia can take other upsetting forms too, like becoming inappropriate or disinhibited.
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Having unpleasant or violent tendencies are by no means a given in people with dementia, and in fat are uncommon. Frustration and depression in dementia can understandably express themselves through behaviour, but most people are not violent or inappropriate.
Where people with dementia do present with challenging behaviour, however, it can be very difficult to manage, and very upsetting particularly for close friends and family members.
Getting professional help in the form of medical support, formal carers to help manage any burden, and peer support and counselling service can be invaluable at difficult times.
Myth 10: Memory loss always means dementia
There are lots of reasons why people may be experiencing some memory problems, and they don’t necessarily mean dementia. Some other conditions are closely associated with "brain fog", and some medications can also make people feel a little fuzzy-headed.
Whatever the reason, it’s important to see a doctor if you’re worried about memory loss or cognitive impairment. It could be something that can be managed easily, or it could be something that can be improved by treatment.
If it is dementia, early treatment can help to slow the progression of the disease so it’s always worth getting medical support. Getting an early diagnosis also means being able to plan for the future and make your wishes known in advance of the possibility that your ability to communicate may decline.
Dementia: Debunking the myths, breaking the taboo
Understanding the medical conditions that you or your loved ones are affected by is a good step in learning to manage and live with these conditions.
When myth and misinformation cloud our feelings about a condition, it’s easy to feel frightened or overwhelmed by the situation.
Having a diagnosis of dementia or a loved one who is suffering from a form of dementia can be worrying and difficult enough without hearing negative stereotypes and harmful myths about it.
With a diagnosis of dementia, it’s important to take each day as it comes and get all the support and help you can.
This article was first published in Homage.