June is dementia month. For those fortunate not to have interacted with this ailment, dementia is a general term used to describe various types of brain disease associated with mental capacity decline.
The most common of these diseases is Alzheimer’s, affecting about 70 per cent of dementia cases. Statistics indicate there are around 60 million people living with dementia globally but since many cases operate in the shadows, there could be more.
Our family has lived through this condition with our mum for the last ten or so years and while we consider it a blessing every day we have her around, it has been a depressing and confusing experience to see this great lady, who defined our lives, decline in capacity and awareness.
I share today’s insights to help those going through the grief of mourning the gradual loss of a person they love.
As I have interacted with different ones on this issue, two issues have concerned me.
The first is the stigma attached to this condition and other mental challenges. Many people suffering from dementia are kept hidden; their families are ashamed to produce them and their idiosyncrasies for public view.
I am also concerned by the lack of support structures through which those undergoing the trauma (and yes, it is trauma) of looking after persons with dementia can share ideas and obtain social support.
It is for these reasons that I want to share some ideas, starting with the general stages that persons suffering from dementia go through, hoping they will help somebody cope better.
A caution; however, what I submit are general stages and the details, or even the order thereof may play out differently in different people and in different dementia types. Generally, the earliest stage of dementia is hardly perceptible, except by those very close to the person. It also doesn’t last long; between initial symptoms and the middle stage takes about two years.
In this stage, the person is largely independent and able to function. They however have unusual memory problems, especially recalling recent events. They also struggle with thinking through complex things or planning.
This is one of the most traumatic stages for the person since they are aware of their condition and incapable of doing anything about it. Many families miss this stage or live in denial, believing their loved ones cannot surely be affected.
This is sad because, being in a stage when the person’s mental capacity is whole, it is the ideal stage to help a person plan their future including divesting that which needs to be divested.
Secondly, while there is no outright treatment for the disease, there are interventions that can be made at this stage that may slow the progression of the condition. It is therefore important that where dementia is suspected, it be established clinically.
The next stage of dementia tends to be long, averaging about 5-10 years.
In this stage, memory loss worsens, and many people start failing to recognise family and friends. This is traumatic, especially for family.
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Fortunately, it does not occur overnight and by the time it happens, one is mentally ready for it. I used to say I would die if my mum didn’t recognise me. Nowadays I have to be with her for an hour before she works out it is me.
While it is sad, I choose to focus on the blessing of her presence. Speech becomes problematic and many people start having delusions, including believing that people around them are trying to harm them, steal from or cheat on them.
Changes in moods are common at this stage and people become unexplainably upset, fearful or angry.
Interestingly some changes occur at predictable hours for many people; tending to be confused, aggressive or fearful towards the evening; what has been called sundowning.
It is also at this stage that people have difficulties with the use of the toilet or simple acts like washing and bathing. Always remember while you may be traumatised, the person’s trauma is worse.
Learn some practical ways to cope and express love, concern and care. Next week, I will share on the third stage and make suggestions on some must-dos and not-dos in all these stages. Blessed dementia month.
-The writer is an advocate of the High Court of Kenya