‘Social interaction plays key role in exercising and extending brain life’
What informed your decision to set up a foundation for Dementia?
IN 2015, I founded Affiong Etuk foundation for inclusive health and it was necessary because my mum, being a nurse, practiced in the 60s/70s/80s and then I took after her. It became apparent in my mum that she valued service to humanity and I really adored it, which also gave me the push to keep going.
My mum, after retiring, moved to the US to live with my sibling and sadly had multiple strokes and then had dementia. So, in 2012, I was able to arrange and my mum came back home and I recall that the first time I arrived to see my mum, she told me that whatever condition she has, I should use it to bless people. So, children, my siblings and myself decided to set up a foundation in her name and sadly she passed on July 2020.
What has been aim of the foundation?
We are raising awareness about Dementia and sigmatisation; I have had a personal experience of speaking to people especially elderly relatives who have Demenstia. Sadly, if you don’t keep an eye, they will be literarily ostracised. So, the work of the charity is to advice people to reclaim the love that we have for ourselves.
Since 2015 when we launched the project, I have trained at least 7, 500 people; I run town halls, gather people in a stadium and just tell them about Dementia and its symptoms. I am also teaching people to utilise the residual memory of patients for public good. I still recall coming to Nigeria during Ebola to do a social anaylsis of how Nigeria got out of Ebola and I was trying to support the work the West African Organisation was doing and what lessons we could learn from Nigeria for other West African countries like Liberia at the time. I remember putting a call out to my mum – then she was very alert and she could remember that as a nurse, she used to fight tropical infectious diseases. I remember her telling me some of the barriers and precautions they took at the time, which for me, they used for Ebola. So, I am using that, because my mum had lost her memory, because to this condition and her memory was residing in the time that she was actively practicing as a nurse, she was always telling me of how we can prevent Ebola from spreading through her prior experiences.
I am saying this because in the UK where I live in particular, we are actually reaping a lot from people living with Dementia; in my university, if you are in any health programme and designing a new curriculum, we will be asking you to get someone from that profession who is living with Dementia because when they tell you about nursing of the past, you know that’s the nursing we need now. I keep saying that those people practiced at the time when nursing was a calling.
So, when they tell you what you need to put in your curriculum, then it is the fore and essence of nursing.
So, we have people living with Dementia as working groups and we invite them to tell us about our curriculum so we can reap a lot. Rather than ostracising people living with dementia, we should be harvesting their knowledge and experiences.
What has been the acceptance of your programme?
Our programme has been widely accepted; I have a team of people working with me – volunteers. I have three levels of programmes: For the general public, health professionals and policy makers and advocates. The idea is that we get to a point every human being in our society understand that when somebody is living with Dementia, they are not wasteful and if we grow and support them, they can be of benefit to us.
In 2018, we launched a school’s project, so we take Dementia to the schools in AkwaIbom State and the idea is that, if we can create a generation that are elderly alert and understand, it is a condition that just get to people. One in six people over 80 live with Dementia; the situation is more interesting in a place like Nigeria, because analysis shows that increment in our lifespan is so overwhelming that we are more likely and prone to living with Dementia. So, I spend time telling people that it is not a curse; the day I got the diagnosis that my mum was living with Dementia, I knew she would because this woman did not sleep. She worked in the hospital; she would come back to the communities delivering babies, even when she retired she was still running pharmacies and helping people all free of charge. Now, if you have such an active brain, it gets to a point when as a coping mechanism it slows down biologically and then leads to Dementia. Hence, the idea of training school children is to make them aware that their parents or grandparents could be living with Dementia and should be directed properly and well harnessed.
What age lives with Dementia?
Usually, those from their late 60s down wards, however some people in their 40s and 50s have been diagnosed of Dementia. It has also been researched although not completely proven that people who actively use their brains especially if there’s a constant knocking of the brain, there is evidence to show that footballers are living with Dementia a lot younger, because they are heading the ball and running into each other all the time. There is a current project where retired footballers are doing a lot of campaigns to help each other.
Is Dementia gender specific?
More women suffer Dementia and you can tell why; they get all the stresses in the world. They are the breadwinners, takes care of the kids, they get beaten up because of tradition and those who become widows feel the brunt. So stress is a major predisposing factor.
As part of your campaign, is there something you are doing to prevent Dementia?
Yes, I do. I talk about the pillars of health because people mix up normal aging with Dementia. I have an 84-year-old colleague who is the best DNA researcher in the world, so there are people who can keep living and then age. So, things like good diet, good sleep for six to eight hours a day, social interactions will help.
I am telling parents now that, if the only way they stimulate their children is through computer games and being on the internet, then its time to change, because social interaction plays a key role to exercising and extending brain life.
In terms of reversing Dementia, there has been quite a debate and I believe that the reversal isn’t complete, but you can extend how long someone lives with it; some live over a decade longer and so it is more of what can be done to keep the person going.
Most of your campaigns are in your home state, why is that so?
I am a believer of starting small, and so one of the things I have done is testing it out in AkwaIbom State and knowing that this works anywhere. I have done some work in Ghana as well, because their practice is not so different; when older people start living with Dementia, they take them to a ‘witch camp’, here we take them to churches or lock them in.
You speak a lot about your mum, could you share with us your relationship with her?
It was the best thing that happened to me; my mum was a real friend; I still remember how she hand-twisted me to go into nursing. In those days, we were lied to that going to nursing you didn’t need to be a graduate and my mum said mine has to be different. I went into nursing a little underage and my mum has been there all through. She will always call me ‘mini me,’ and then transitioned to ‘special me,’ because she didn’t want me to stop at clinical nursing but go further. She has been a friend; she would visit me and stay as long as five years; my children adored her. When I left to the UK to study, for the first five years, my children lived with my mum.
You have attained a commendable height, what is your advice to other women who want to sit at the same table as you are right now?
I always tell people to know what they want in life and this should not be defined by what everybody else sees. All that glitters is not gold. Even the bible talks about the things that are since are temporal, so to every young woman out there, there is something about going for what you want.
I remember as a child, I say I really wanted to be someone who impacts life and I decided I will go for that, even though it came with a lot of resilience, hard work. You just know that you are not going to be like everybody else and so you don’t sit there and start comparing yourself with people because you know you are unique and the best you can ever be.
Another is, I say to people, you must have a way of examining yourself on a regular basis; so you must have a personal audit of your beliefs at different times in your life will help you realign as you go further brings out the best in you. You must also have a way a replenishing your resources; so one way I replenish is reading, I do a lot of social media, I also build my spiritual strength and these help me go on. Lastly, don’t allow anybody to tell you, you cannot.
You must always work around knowing that it is doable and you can do it, and because you can do it, it is very difficult for people to shift that belief. Be focused, determined and no one will be able to convince you otherwise.
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