World Alzheimer’s Day empowers families and caregivers

Sep 28, 2022

Every year, World Alzheimer’s Day serves to raise awareness around and encourage support of dementia. Themed “Know Dementia, Know Alzheimer’s Disease”, the 2022 event on Wednesday, 21 September emphasized the need for post-diagnosis support.

Ikamva Labantu commemorated this momentous day at the Ikamva Labantu Enkululekweni Wellness Centre, which facilitates a Seniors Programme in Khayelitsha and surrounding township areas.

The occasion provided participants with an opportunity to talk about living with Alzheimer’s/dementia, and to share how the disease impacts their daily lives. It aimed to empower families and caregivers of seniors living with dementia to make informed decisions and be instructed on the appropriate care of loved ones. This equipped both practitioners and caregivers with the expertise to identify the symptoms of the early stages, what to do following a diagnosis, as well as appropriate family support.

Mncedisi Khatshwa, Deputy Chairperson of Ilizwe Labadala (“Voice of the Elders”) community forum commented, “The event just opened my mind. I’ve had experience of dementia with a lady from one of our seniors’ clubs. I appreciated the point the speaker made about having a place that educates everybody. This is very important.”

The gathering also aimed to reduce discrimination and negate the stigma surrounding seniors with dementia by giving NGOs working with older persons pertinent facts, in an attempt to demystify the myths about the disease.

Ntombizanele Jozana, an Ikamva Labantu Senior’s Club Member said, “Some of us needed this event. We don’t know where to go to and what important information we need to know about dementia. If it wasn’t for Ikamva Labantu’s Seniors Clubs, we would be locked up at home and not have access to these kinds of events or information. I knew about dementia before the event, but I didn’t know how tough it is for those living with it.”

Retired Associate Professor from The Alan J Fisher Centre for Public Mental Health at the University of Cape Town, Marguerite Schneider, was one of the guest speakers. The centre’s recently completed Stride Project inspired the team to share their results with those directly affected by dementia. They expanded on their quest to strengthen responses in developing countries. The project’s research focuses on the stigma surrounding the disease, what it takes to care for someone, and the costs involved.

“The kind of work that Ikamva Labantu is doing is so important, and it is really important that the research supports what the organisation is doing. These events help to bring the research and NGOs like Ikamva Labantu together and spread the word,” said Ms Schneider.

This is in light of research results, which show that “Approximately 12.5% of older people in South Africa are at risk of dementia, and these rates are higher than the global rate thought to be between 2% and 5%. People with dementia are four times more likely to experience abuse than someone who does not have the disease, proving just how challenging it is to care for someone with dementia. There is so much fear and shame associated with dementia, and this stops people from getting help,” she added.

Geraldine Phillips, a caregiver from Khayelitsha whose 85- year-old mother was diagnosed with dementia said: “I learnt a lot from the results of The Stride Project. I’ve learnt the importance of love, care and support for the elderly experiencing this disease. We should make others aware of how they treat people living with dementia. If they meet them in the street, they must not hit them, but try to find out where they live and take them home before he or she gets hurt. It’s important for caregivers to support one another and give each other advice and information on how best to care for our loved ones.”

In the face of this debilitating disease, Ikamva Labantu is proud to work together with the township community members to create awareness and agency; and to identify support systems in caring for seniors living with dementia and their families and caregivers.

Read a wonderful and thought-provoking article written by Journalist, Marion Edmunds, on the importance of hosting such an event: