For those who have not interacted with this debilitating condition, dementia is a syndrome, largely affecting seniors, in which there is deterioration in memory, cognition, behaviour and the ability to perform everyday activities.
It is the untold story of many silent tears, some of which I shed as I pen this piece.
Dementia affects about 55 million people globally, with 10 million new cases every year. It is expected that 120 million will be suffering from this condition by the year 2050 in the wake of increased population aging.
To give perspective on the numbers, there are 36 million people infected by AIDs globally and there are roughly 42 million people diagnosed with cancer. With these numbers, and with most of the affected people living in the developing countries, it is an issue that countries like Kenya must take seriously.
Away from the statistics, let me describe the raw reality of dementia. A fairly energetic and vibrant senior, starts to struggle with memory. They are generally forgetful and confuse days and events. Everyone wrongly assumes it’s part of the natural ageing process.
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Soon, the person is unable to rationalise normal events, and repeats themselves ceaselessly. For persons in contact with the affected, this just causes mild embarrassment but is not yet a crisis. But for the patient, the season of anguish has started.
They know they are losing control and feel alone and isolated as their former social contacts ignore, avoid or shush them. Before too long, the person struggles with basic issues of self-care. Personal hygiene issues become a challenge. Interspersed with these changes are intense mood swings -- the person, as they become more aware of their incapacity to manage themselves, get depressed and unusually agitated.
They get lost within the vicinity of their normal surroundings. Some become delusional and make all manner of accusations against loved ones. In the villages, people say they’ve gone mad and shun and shame them.
Sooner or later, the final stage kicks in. The person is no longer aware of their surroundings. They cannot recognise their children or spouse. They are unable to take even the basic care of themselves even though they are still physically healthy. Their eyes have an empty look. Its torture for their loved ones.
The people who suffer most are the caregivers. Woe unto the family if the affected party is the woman of the home. When it’s a man, a woman’s natural nurturing side kicks in. The family remains looked after, there is food and the home is managed. If it’s the woman with the condition, in a culture where the home is traditionally the woman’s domain, the burden on the partner is tougher.
Suddenly there will be hunger. Unfortunately, one of the things that most dementia sufferers fight the most is external helpers, probably out of a fear of totally loosing control. The challenge then becomes how to balance between enabling the person some measure of dignity and control against the multitude of risks that come with being alone. There are no easy answers.
I write this piece to encourage many whose parents and other loved ones are going through this unfortunate condition that they are not alone. Unfortunately, there is no cure for dementia yet, despite investment of millions of dollars in research. So, for those on this road, the first thing is to come to terms with the reality and to accept that it will not get better.
While there are some treatments that can manage mood swings, the deterioration in cognition will increase till death finally visits. What the sufferer needs is unceasing care, tenderness and support to make this tough transition a little easier.
With few institutions giving professional care for such situations, this will happen within family, with the responsibility hopefully shared. For those whose parents are still energetic and fully alert, please pay them a visit this weekend. Soon they may not know who you are.
- The writer is an advocate of the High Court of Kenya.