The other day as I was going around speaking to caregivers who have loved ones affected by Alzheimer’s disease I posed a question … Do your neighbours know what your loved one is suffering from?, the church congregation, all family members? and the answer to all the questions was NO. So I asked why not… the response I got was that it is difficult to explain what our loved ones are suffering from and also we already have been labelled as a family that has someone who does not have a stable mind. In Kenya it is know that mental diseases are “most feared” and thus most families are hiding their loved ones either literally in their homes or by not giving information to people around them
Most of the caregivers have suffered from stigma and the only way the stigma can stop is by talking about what we are going through . For example when we take our loved ones to the hospitals do we inform the doctors or the nurses that our loved ones are suffering from Alzheimer’s? There is an advantage in letting people know what our loved ones are suffering from. We are able to get more people to rally behind our cause of educating the public and thus creating awareness about the disease. This will lead to a communities that are dementia friendly and people will be all around us ready to assist. we therefore must come out of our comfort zones and start speaking. The more we talk, the more people will be aware and the more will offer resources, time and the help that we require.
The other diseases that are given a priority in Kenya are having the media coverage and sponsors because someone dared to speak. Yes in the beginning you may be demonised by family and friends but it will be worth it. As one day we will look back and we will be glad that we spoke .
Alzheimer’s caregivers it is time we stood up to be counted.