The great thinkers have taught us that silence is golden and that it is better to remain silent and be thought a fool than to open one’s mouth and remove all doubt, but there are times when this same much-revered virtue becomes our enemy. There are times when some things are better not left unsaid.
This is true in the case of domestic and intimate partner violence. In a departure from the past, when abuse was a secret between the abuser and the abused, those being abused are now being continually exhorted to break the silence about what is usually an embarrassing and traumatic event whenever and wherever it happens. Abused persons now know that they can receive help if they let someone know what is happening. In addition, there have been a few instances where abusers were shamed into stopping after their actions were brought into the public domain.
Another example: Some years ago, there was a tremendous stigma attached to cancer. It was whispered about and referred to as ‘the big C’. Persons afflicted hid it from friends, and relatives were only briefed on a need-to-know basis. That has changed so much over the past few decades. There is now an annual massive walk for breast cancer and other or similar events for different forms of the disease, mostly to raise funds for research. Cancer sufferers are even using blogs and other new media to share their experiences with the disease and with chemotherapy and other treatments in order to inform, inspire and encourage others.
But it is in the midst of the trauma of mental confusion that is Alzheimer’s disease that silence is the worst enemy. Today, upwards of 36 million people in the world are afflicted with Alzheimer’s disease and other types of dementia and this number is multiplying annually as the world‘s population ages, but remains physically healthy.
Alzheimer’s is now classified as a global epidemic. Yet in many parts of the world there is tremendous ignorance about this illness. Because of lack of knowledge, misconceptions develop and many people hide the fact that they are facing Alzheimer’s or dementia in their families. They are afraid that their elderly mothers, fathers, aunts and uncles might be called insane and that they too might face the stigma which is attached to mental illness.
But the fact is that Alzheimer’s is much like any other illness – the only difference is that except in cases where it is diagnosed early, sufferers are unable to talk about it; to let others know exactly how they are feeling and adapting. Alzheimer’s affects memory, thinking, and behaviour and it is one form of dementia that gradually gets worse over time. Because it impairs cognitive skills, sufferers experience depression and sometimes agitation.
The tendency, particularly in developing countries at present, is to chalk it all up to old age or senility, which does a tremendous disservice to sufferers, who need special care. According to Alzheimer’s Disease International (ADI), research shows that most people currently living with dementia have not received a formal diagnosis.
ADI notes that Alzheimer’s disease is among the most significant social, health and economic crises of the 21st century, recommends early diagnosis and intervention and that every country should have a national strategy, which includes awareness raising, training of the health and social care workforce, and health system strengthening. In developing countries where the resources might not be readily available to do all of this, it is important to at least promote conversations on this illness to counteract the ignorance which leads to stigmatization. Persons with severe Alzheimer’s whose memory loss is so complete that they can no longer speak for themselves, still need to be understood.
September 21 is World Alzheimer’s Day and this year, for the first time, the entire month is being recognized as Alzheimer’s month under the theme ‘Dementia: Living Together’. The World Alzheimer Report 2012 will be launched during this month, and will be on the topic of stigma.
