Dementia in Africa:
By Elizabeth Mutunga
There are many things that caught us off guard as have we dealt with matters dementia both in our home and through the Alzheimer’s and Dementia Organisation Kenya. It is a hard journey for many because there isn’t enough information about it so a lot of knowledge falls through the cracks. The biggest thing that hits us is stigma. The stigma is born of our beliefs as a people and our ways of life. Allow me to share a few things about our African experience.
1. Taboo: there are things we do not talk about either because they do not exist, or they are just not talked about…this is one of them.
2. You are cursed or bewitched: many people see the loss of the mind as a curse for something you have or have not done. This leads to being side lined in the community and losing support structures
3. Shame: when your family member who was previously successful and outgoing then they become unkempt and confused, many are ashamed of the situation and tend to hide the person away from the eyes of society
4. It is normal: it is assumed that as one get older they get forgetful and combative about the things of the youth leading to a culture of leaving the aging to their own devises when they should be seeking further help and support.
5. The person is mad: we all know that every community has a mad man and we do not want to be the family with the mad man yet many times that is how dementia presents itself.
6. Putting things order: many times, when we as people if they have wills, the common response is ‘Are you trying to kill me?’ Many people believe that writing a will is inviting death, so they don’t do anything and when they get too confused to do much their property is swiped from under their feet. Many times, women and children find themselves on the receiving end of this when they are evicted from their homes when their partner and father dies.
It was hard to watch our loved ones deteriorate and battle the additional challenges of life in Africa. However, one thing to remember is, our relationships affect how we deal with each other. If a person is always mean to others, even when they get sick, it will be hard for people to step in and take care of them and the reverse is also true.
If you are dealing with dementia or have lost someone to it, we recommend a few things:
· Join a support group: there are groups of people who are in or have been in your situation. Find them and you find support because you are all on a similar journey.
· Invest in a caregiver: you need time to reconnect with yourself and build the resilience to keep supporting your patient so find a way to get help even if it is just a few times a week so you get go and sit in the sun or attend a meeting or event that will strengthen you. Care givers are either professional or can be family members too.
· Choose your circle wisely: you need positive people around you as much as possible. People who believe in life and not that you are bewitched. People who will provide emotional, spiritual, social and even financial help when needed. Build a tribe that helps you get through it.
Remember, others have been, are and will be on this journey so let us all do our part to build a community of support.