Alzheimer’s Care in South Africa: It’s a Spectrum

My time in South Africa is coming to a close and I board a flight tomorrow back to Istanbul. In my three months here, I have visited over two dozen elder care facilities or projects, met some of the most inspiring and hospitable people, and faced several challenges. I could easily spend more time in South Africa doing research and part of me is bummed to be leaving so soon.

When I speak to strangers and fellow travelers about my project I usually get two questions: why did you choose to come to South Africa? And, what have you learned? At the end of my three months here, I have added another question for myself: What Alzheimer’s experience has influenced me the most? These are questions that I am constantly working through and revising.

Why did I come to South Africa?
I have spent a lot of time over the last (almost) six months thinking about my values and in my “top ten” list, I have determined that I really value personal growth and challenge. Over a year ago, when I began developing this project, I determined South Africa would be a challenge for me: it would be my first time on the continent, apartheid era imbalances are still very prevalent, South Africa had the highest reported rates of HIV and AIDS internationally, poverty and unemployment are high, and South Africa is the rape capital of the world. I figured because it would be a challenge it would also be an opportunity for growth.

In terms of Alzheimer’s and dementia care, I wanted to come to South Africa to look at the effect of apartheid era imbalances on elder care, the different approaches to care based on the variety of cultures within the country, and the effects of the HIV/AIDS on grandparents and grandchildren. Alzheimer’s South Africa was also very receptive to my coming so, that helped.

Lastly, I heard rumors of South Africa’s beauty and I wanted to see it for myself. The landscape ain’t bad.

Afternoon Hostel View

Waterfall Hike

Waterfall Hike

What have I found?
As the title of this blog posts suggests, I have found that there is a spectrum of Alzheimer’s care in South Africa. In general, if you have financial favor on your side you can access some quality Alzheimer’s and dementia care. For example, there is an Alzheimer’s Home outside of Port Elizabeth called “Country Home.” Most of it’s residents are from the upper class of South Africa, all are white, and residents are made to feel at home. The carers spend time getting to know the residents, showing them respect, and encouraging them to be engaged in the numerous activities. Food is cooked in house. And, the owner is dedicated to treating the residents and their family members how she wished her own mother was treated when she suffered from the disease. It is a quality place but a place that is only available for a few.

On the other end of the spectrum, you get witchcraft. I can still remember exactly where I was standing when I learned about the issue of witchcraft and aging throughout Africa. My mouth fell open, my heart sunk, and a bit of shock entered into the equation. In many communities throughout Africa, traditional medicine is the rule of the land. I am not unfamiliar with traditional medicine and, in general, have an enormous amount of respect for traditional medicine and local knowledge. Alzheimer’s disease and dementia being seen as witchcraft, however, challenges that respect.

In some rural communities, people suffering from Alzheimer’s or dementia will be taken to see the village sangoma, or traditional healer. The sangoma may take the fact that the person has been wandering at night (a symptom of the disease), has lost the ability to speak coherently(another symptom), and/or forgotten their activities as a sign that the person is either a witch or has been affected by witchcraft. In some cases, the person is either killed on site, abused and neglected, or kicked out of the community(which is often a death sentence).

Given an understanding that Alzheimer’s disease and dementia are both recognized medical conditions, the murders and abuse of some Inflicted by the conditions are being called to question and some progress is being made. I spent a week with the Alzheimer’s South Africa regional director of kwazulu natal. Kwazula Natal is a region in South Africa with many tribal communities, a strong presence of sangomas, and a growing belief in witchcraft (among some sectors of the population). The Kwazula Natal Alzheimer’s group is making some progress in spreading awareness about the disease in rural tribal communities. For example, in one tribal community, they have an office that does income generation for local women through the makings of beaded forgetmenots. This same office also does home visits for people suffering from the disease, creates awareness signs in the local language, and also works to try to get the tribal leader and traditional healer on board with their mission.

Road Blocks

Road Blocks

Forget-Me-Nots

Forget-Me-Nots

Tribal Community Outreach Office

Tribal Community Outreach Office

The examples of the country home and witchcraft, I hope, demonstrate how diverse care for Alzheimer’s disease and dementia is within South Africa. These sorts of painful disparities aren’t uncommon in South Africa but as with most things, there is some middle ground. There are Alzheimer’s care options that don’t quite fit near either end of the spectrum or that fit closer with one than the other. In general, most of the homes that I visited fit in the middle of the spectrum.

Sunnyside Park Home is an example of a middle of the spectrum kind of home. The home catered to the lower income elderly and did not offer a ton of amenities. It did offer an Alzheimer’s ward for about thirteen women of all races. The Alzheimer’s ward lacked a sufficient common area, there was little room for full on engagement with all of the residents, and the patients had little privacy. Yet, Sunnyside was one of my favorite homes. The carers really impressed me…they led dance and singalong times, touched the patients with compassion, and always looked into the residents eyes. They treated the patients with respect and love and the patients responded positively (surprise attack!). Of all the carers I have seen so far, the carers of Sunnyside were the most impressive.

Monkeys: The Alzheimer's Thieves

Monkeys: The Alzheimer’s Thieves

There are a number of other examples and experiences I could recount here but my guess is I’ve lost most of you already. If you want to know more, let’s skype. I could talk for days about the spectrum of care (and everything else) in South Africa. For. Now though, I’ll move on to two very influential Alzheimer’s experiences.

Influential Moments in the Alzheimer’s world:

In my last post, I shared my experiences at and my disappointment with the St. Joseph’s Home with you. The home closed a couple of months ago and many of the residents moved to a sister home, the Nazareth House. I spoke to a family member of a newly relocated Alzheimer’s patient and she seemed to be happy enough with the arrangement. The Alzheimer’s and dementia patients were living of together in little cottages with carers. Then, I received word a couple of weeks ago that all of the St. Joseph’s Home residents needed to leave the Nazareth House. The reason was not fully disclosed and family members were only told: “it’s financial.”

When I received the last e-mail, I immediately started to tear up. Is it not enough that these family members and Alzheimer’s patients are going through the disease? What happened within the management of these homes to influence them to turn out some of the patients who need the most care and abandon the family members that often need the most support? The answer that it was “financial” doesn’t really cut it for me. I am still working through this and trying to find some more answers. I am left with a lot of questions and many concerns. I know that the late St. Joseph’s Home and the resulting expulsion of the Alzheimer’s patients will forever influence me and that the family members and patients I grew close to will be on my mind for a long time to come.

Influential Moments in the Land of Snakes:
In December, I was fortunate enough to spend about two weeks in Mpumalanga, a very rural area of South Africa near to the Kruger Park and full of fatally poisonous snakes. For a few days, I worked in the Tonga Hospital. Tonga Hospital is a government hospital that serves the local community but often lacks adequate resources, competent staff, and any safety standards. It is also the place where I met my first snakebite victim (and then went home to a house with a loose black mamba!!!!). It is a hospital that advocates for medical male circumcision to a) increase a mans manliness and b) reduce the spread of stds and aids. It was a hospital of challenges.

It was particularly challenging when staff members repeatedly asked me why I was working withAlzheimer’s and dementia when there were clearly bigger fish to fry. I was told on several occasions that they don’t work with Alzheimer’s patients because what is the point? And, wouldn’t resources be better allocated somewhere else? Families sometimes abandon Alzheimer’s victims at the hospital and the hospital in turn places the victim back in the community without much regard to the victims well being.

Then, on my last day at the hospital a woman came in with her mother. The woman seemed to be suffering from Alzheimer’s or dementia. And, they wanted me to talk to the family to explain the disease. I was happy to talk with the family, through the assistance of a less than excited translator, and I attempted to explain the disease, symptoms, and helpful hints. At the end of the day though, I can’t help but feel like that families trip to the hospital was a waste. In large part, their need and pain was dismissed by the hospital, I could offer nothing tangible, and no support networks or options really exists for their family. All I could do is look into their eyes and try to wordlessly communicate how genuinely sorry I was that I couldn’t do more and that they were having to go through this experience.

I left that experience with a lot of unanswered questions. I still have a lot of unanswered questions. Thankfully, I’ve got a lot of time on my hands to think about things.

Looking Forward:
I leave South Africa tomorrow but I have a sneaking suspicion that I am not done looking at elderly care here-and, that looking at geriatrics throughout the continent could be on the horizon. I have a genuine and deep passion for global health and for the treatment of the elderly internationally. With that in mind, I know that any return trips to Africa for now will be just that: research trips.

Throughout all of my traveling, my appreciation for “home” has grown. As has my dedication to working to improve my own communities. So, folks, no need to worry about me applying for another international fellowship or position soon. I am gearing up to work in our communities. And, I am excited to see what lies ahead (as long as it is not chronic unemployment).

For the moment though, I am trying my luck out in Turkey once more before heading to another yet to be determined country. Somewhere in Latin America sounds appealing. I’ll keep ya posted but I expect I will be home in mid to late March.

About tomakingitcount12

I'm a recent college graduate studying cultures of Alzheimer's care giving throughout the international community thanks to a generous fellowship from Hendrix College. My fellowship with enable me to meet with leading Alzheimer's disease, dementia, and aging professionals, attend a number of conferences, and to learn from caregivers in Ireland, Western Europe, and South Africa. My fellowship was inspired by my Auntie Mare and Grandma Louis, both of whom passed away in May of 2011 after suffering from the disease for several years.
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2 Responses to Alzheimer’s Care in South Africa: It’s a Spectrum

  1. Susie McCoole says:

    Jen love hearing about your adventures. Can’t wait to talk to you when you get back. Safe travels!

  2. Looking forward to seeing you when I return stateside! Maybe we can convince my mom to come in and go to a Cardinal’s game again! Hope all is well!

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