Paola Barbarino, CEO, explains why stigma presents a major challenge for addressing dementia in sub-Saharan Africa – and how taking an elevator can lead to greater support.
During my recent trip to attend the 4th Sub-Saharan African Regional Conference of ADI in Nairobi, organised in partnership with Alzheimer’s Kenya, I stayed at a local hotel with several African members of ADI. During the conference we had heard and shared experiences about serious issues of stigma and denial surrounding dementia in the region and how difficult it was to persuade the governments to do anything. That said, the Kenyan government committed during the conference to promoting an action plan on dementia by mid-2018, thereby proving that if people get together they can act as a catalyst for good.
The team had just returned to the hotel after a very intense session. On the television in the hotel lobby, the BBC were breaking news of a new study which suggests there is a link between the loss of the sense of smell and possible development of Alzheimer’s disease. We all cheered as any step forward, no matter how small, really makes a difference in our community, forever hopeful for a solution.
In the lift, after everyone left for their floors, I remained alone with a young member of the hotel management. He asked, timidly, “Are you here for a conference on dementia?” I responded affirmatively. He said “Is it true that it is caused by evil spirits?”. I said, “No, it is most certainly not true, it’s an illness like any other” and then I added “In your family?” He said very quickly– “yes, my grandfather, and now my father, we are very tired, we don’t know what to do, people say it’s the evil spirit, what can we do?”.
The lift stopped at my floor. I quickly gave him the contacts of Alzheimer Kenya’s support group, told him he should seek help, that we are here to help. He really lit up when he heard of a support group and told me he and his family where really depressed and did not feel they could talk about it with anyone, and felt cut out by their community. The door closed as we parted.
There was a whole tragedy unfolding in that elevator. A tragedy of denial, hopelessness, ostracism, depression. Yet there was also hope. This man felt comfortable enough to ask me, a total stranger, for help, and I felt a wave of gratitude to Alzheimer’s Kenya – wholly staffed by volunteers – for providing a ray of hope in this stark landscape. There was someone I could refer this man to whilst we all wait for the Kenyan government to work towards a plan which clearly can’t come too soon.
Our other sub Saharan African members have real troubles getting their government to even acknowledge that dementia exists in their country. But coming together, two weeks ago, has already made a difference. Associations in Zimbabwe and Lesotho, inspired by Kenya have been emboldened to ask for a meeting with their Ministries of Health to get things moving. Our Kenyan member has started doing outreach work in villages where perception of evil spirits presents the greatest challenge to understanding dementia, inspired by our Namibian member. We are all now looking at how to weave the discourse on dementia within the narrative for Non-Communicable diseases, where we may get better traction. Everybody is scaling up their press activity and fundraising activity wherever possible.
In short, civil society continues to do what we do best, rolling our sleeves up, providing help and support where there is none, raising awareness in the face of silence, providing solid information and suggesting to governments viable solutions to challenges. But the time has come for all of Africa to start raising its voice; the man in the lift had to wait until we were alone to ask. The stigma surrounding dementia is still too great. It is time to share these stories and together we can make change happen.
CEO, Alzheimer’s Disease International