Episode 18: A Conversation With Feyi Raimi-Abraham, Founder and CEO of the Black Dementia Company and Caregiver.
Listen to this week’s episode of the 2020 Dementia Series, for an intimate discussion between Dr Bahijja Raimi-Abraham and her mother, Ms. Feyi Raimi-Abraham and her experiences as a caregiver for a parent living with dementia, as well as her new initiative, The Black Dementia Company.
Monday Science is running a fundraiser for DAI during September 2020 in support of Dementia Awareness Month, aiming to raise £500. Please donate via our Just Giving Page.
Please note (for clarity) that Dr. Bahijja’s grandmother is frequently referred to as “mom” within this interview.
Dr. Bahijja: Firstly, thank you so much for agreeing to come on and speak to me today! I’m very grateful for you coming on today and taking the opportunity to give some very personal insight [on dementia care]. To start off, tell us a bit about yourself.
Feyi: Right, [to introduce myself], my name is Feyi Raimi-Abraham. I wear many different hats, but I have done a quite a bit in the creative industry. I also am a qualified employee relations specialist and mediations expert. I’m very interested specifically in the relationships within the creation industry and mediation [within that field], amongst other things.
More relevant to today, I’ve also recently founded a company called The Black Dementia Company. Really, the company focuses on trying to contribute to the space of dementia care, specifically for those with African and/or Caribbean backgrounds — to make sure there are services available for them, and [their support networks].
Dr. Bahijja: I am super excited and proud of what you have put together with the Black Dementia Company over the past few years. Its nice to see you sharing the [information you have learn’t] to support other people.
Dr. Bahijja: To get straight into the interview— when did you start to notice a difference in your mom’s (Dr. Bahijja’s grandmother) behaviour?
Feyi: In hindsight, I realise I started to notice a change many years ago. Around 12 years ago, I remembered asking my mother to do my hair for me, asking her to retouch it, and she just put a little bit of the relaxer on the tips of my hair and said: “that was fine”. I thought at first that she just didn’t feel like doing my hair that day — [she had done it frequently in the past, whether it be hot combing, relaxing, etc.]. Around 10 years ago, there were also certain behaviours, or other relatives commenting on her behaviour or things she said. I couldn’t quite put my finger on it, I just thought “this is quite odd”.
I noticed as well that she was becoming very forgetful, but at the time it appeared to be minor things, like where her keys or her glasses were. Many years later, looking back, I now realise, based on my experience and the experiences of others, that those were perhaps the early stages of dementia. […]
I remember hearing about the experience of the founder of an Alzheimer’s foundation in Africa, and she was saying that [one of the early signs] was the way her father would talk about others. He would frequently say things that weren’t true. I also recognised and related to a certain extent with that experience.
Dr. Bahijja: How did you feel at the time, and how do you feel now, looking back?
Feyi: At the time, I was confused, angry sometimes. I would wonder why she was doing or saying certain things. I would go through certain periods of sadness.
The feelings of sadness and frustration still appear now, but now its more of a feeling of understanding and trying to live with what we’ve got.
Dr. Bahijja: So, mom’s official diagnosis was last year, but you had understood there was an issue many years ago. When did you realise that it was dementia and how did you cope with that?
Feyi: I would say about 2 years ago, I realised there was something clinically “wrong”, or just something deeper than a person just getting old or forgetful. I started researching and reading up about the symptoms and key signs. I wasn’t completely sure, I wondered “could it be or could it not be”. […]
Dr. Bahijja: How long did it take to get that official diagnosis, and do you think it took too long to get?
Feyi: From my reading and personal experience, everyone is different. Every person with dementia is different and [has a different experience]. You can read that there are broadly seven stages — but some people whizz through them, some people it takes longer, some people will stay in one stage — really I don’t think it’s fair to say its a matter of “it was right or wrong”.
Really, the minute we said that we needed a proper test, everything was kicked into motion. For us, that happened fairly swiftly. It’s difficult to say when things should happen, its more important to recognise [signs], even instinctively, and reaching out, accepting and moving forward. […]
Follow your instincts, if something seems not quite right, [it probably is]. — Feyi Raimi-Abraham
Dr. Bahijja: I really admire how you’ve accepted [everything] and been so solution-focused, and focused on coping and ensuring mom has a good quality of life. This COVID experience for me, has also really helped with my personal acceptance, as well as doing this podcast series.
Dr. Bahijja: Now, let’s talk about the systems you’ve put in place to support mom. I remember you finding different [gadets or tools] online, like clocks, etc. What sort of gadgets, tools or systems have you put in place?
Feyi: The first gadget I purchased was a clock — it was a basic alarm clock. I thought, if that can help her get out of bed and [establish a routine], but eventually I realised it wasn’t really helpful. I did some more research and found this particular clock on Amazon, that has the date, time, periods of the day (sunset, sunrise, afternoon, etc.) — it was helpful for especially medication or for establishing the time of day during seasons like winter.
I’ve also bought cameras, just so I can still look and watch even if I’m not in the same physical place. I’ve also gotten timed medication dispensers. They’ve definitely made life easier. We also have many sensor lights, to make sure when [mom] enters a room she can see what she is doing or where she is doing. I’ve also gotten puzzles and games.
I’ve also made some gadgets myself, that the Black Dementia Company is also making — such as personalised signs. Things like “toilet”, “living room”, etc. already exist, but we are making more personalised ones like “don’t do this”, or personalised directions/notes. […]
Dr. Bahijja: There can sometimes be a disconnect between dementia caregivers and those living with dementia, and the clinicians and doctors. With things like signs, while there may not be studies or evidence behind it, [in some cases], it can be very helpful. Sometimes without the connection and feedback, it is hard for researchers to understand or learn more about these tools.
Dr. Bahijja: To move on, let’s talk about accepting your role as a caregiver.
Feyi: At first, I really didn’t use that word and didn’t really see it that way. When you first used that word, [I was taken aback]. I really helped when I eventually accepted that and my role as a caregiver — but its taken awhile.
Part of it, is because as a daughter I just accepted that as my role, especially coming from an African and Caribbean background. It’s really a given, in terms of our heritage. [That we will take care of our elders], who once took care of us. A lot of cultures and religions have a similar message [or theme]. More so, a lot of it has to do with acceptance. When I call myself a caregiver, I am accepting that my relative needs care, which means admitting they have become vulnerable. […]
Dr. Bahijja: That theme of acceptance is incredibly powerful.
Dr. Bahijja: To continue on, where does your role as a caregiver start or end, and where does your role as a daughter start or end?
Feyi: The role of being mother and daughter doesn’t start or end; it’s always there. Especially with my heritage, it’s kind of expected that as someone gets older, they might take life a little slower. Regardless of dementia, she is still my mother. It’s just on top of that, there is the layer of being a caregiver. I just have that particular extra interest in that level of care, or in her clinical care and safety, [because of our relationship]. […]
Dr. Bahijja: Could you expand a little bit on your heritage, as we have alluded to it a bit, in previous episodes?
Feyi: I like to refer to myself as bi-continental, my mother is from Trinidad, and my father was from Nigeria. I’ve lived in both places — I have a Nigerian accent now. I was brought up on Pilau, roasted chicken. I love both places dearly. […]
Dr. Bahijja: What has been the most challenging part of this experience, and what has been the most positive?
Feyi: A big challenge has been acceptance — under that umbrella, I think that there is so much to it. You are not just accepting that your loved one has this condition, but also accepting that they will not go back to this person that they once knew. It is very likely that things will get progressively more challenging for them. […]
The joys or rather, positives are knowing that others are going through the same things. There are others who are going through the same thing, and research is currently ongoing. The time I have with my mother is also a highlight, like the joy from the toys and games [I’ve bought], and our conversations. […]
Dr. Bahijja: How has COVID-19 impacted your caregiving for mom?
Feyi: I think, first of all, we’ve been isolated together. Before the lockdown got strict, and we had an idea that older people were more vulnerable, I packed my bags and moved in. Thankfully, we’ve been fine. In that sense, so, there hasn’t been an impact.
Sometimes with hand sanitisers, or people wearing facemasks, I just constantly have to remind her and be explaining why we have to do these things right now.
In the early days, with the shopping craziness, there were issues with the lines. At one particular shopping market I got there at 8 AM, and they said they were letting in only elderly people and NHS staff. I was just so frustrated and had to call the stuff — [there were no accommodations for caregivers]. I am doing shopping for an elderly person who needs assistance — it did not seem fair for the people who cannot come out to shop, but need help. Afterwards, slowly but surely, some of the supermarkets caught up, however. […]
Dr. Bahijja: Earlier you mentioned the Black Dementia company and your mission, is there anything else you’d like to add about what it means to you?
In terms of what it means to me, it really started as a project. I recently incorporated it as a company, but to me, it really is an expression of my own experience and its an invitation to anyone else who would like to join in with my journey. What all of these dementia organisations are doing is amazing, and basically, we are standing on their shoulders.
The thing is, however, while dementia doesn’t discriminate, when you think about the things that make life more enjoyable for those with dementia or the research that is available, there is really no information out there for those who are Black, or of African and/or Caribbean backgrounds. The Black Dementia Company exists to complement [the existing care], not to compete with it. I am really just trying to provide a service to those with similar backgrounds to me. […]
Feyi: [As we move towards the end of the interview], I was going to ask, what has your experience been and how have you felt about this journey from a granddaughters point of view?
Dr. Bahijja: There are really two points for me — mainly being how this has affected me as your daughter, and how this has affected me as mom’s granddaughter.
After sharing this with me, [your suspicions regarding her having dementia] one of my main focuses was making sure you didn’t forget yourself. I then also realised, after reading up about dementia and the role of caregivers, that one of the key points was really that the caregiver can lose themselves in the process and not take proper care of themselves. You are naturally very caring and altruistic by default, so I was really concerned you might forget to care for yourself.
I took it upon myself to try and remind you to look after your needs, health and making sure you didn’t forget to have your own fun and were still enjoying yourself.
Then with how it affected me as a granddaughter, you know, we had to change the way that we socially interacted. Previously, we would go out for lunches, and now that’s different, as the foods she like have changed. I’ve been mindful that things have been changing, but funnily enough, when I was thinking about what I wanted to do for the podcast, I realised this would be a really great opportunity for you to have an outlet and a platform. I later realised, though, that I also would have to come to terms with things and [accept what was going on]. […]
In the course of even just putting together this series, knowing that we will be raising awareness and having difficult conversations, that has really been my process.
Once you feel that there is something wrong and you have consulted experts, and have accepted that — if then, after accepting, you feel that you can’t meet your loved one in their space or be within their new [mindset]. If you cannot allow them to be themselves with their condition, it is better to handover their care to someone who understands that you have to let them be themselves, dementia and all. They have their own right to exist and be happy like you have your own right to exist and be happy. We have to let them be themselves as much as possible and try and meet them in their ‘space’.
— Feyi, on the issue of acceptance.
Dr. Bahijja: On a concluding note, what does dementia mean to you?
Feyi: Let me tell you the honest truth — I hate dementia, I hate it.
It is a wall, a closing wall or tunnel. Its the truth. We are living with it and getting on with it — not just me and you, but many people, but a world without dementia would be a better world. We love our relatives and family and [want them to be happy], but I hate dementia. I really can only describe it as a closing wall.
For a person with dementia, that start as a person in an open room, but as it gets worse, the walls just close in on them — it doesn’t mean that the person ceases to exist, but they are stuck in those closed walls. Our role is to find a way over those walls, to take care of them.
This experience, although I am still on my journey and still have my moments of anger and frustration, has forced me to be more caring. I am more selfless, reflective — when you are so close to a condition like dementia, you realise that ego is so pointless. Just be thankful that you know who you are, and can make choices, and can consciously appreciate the things around you. Be the best person you can be as an individual, and let the people around you be their own people.
Dr. Bahijja: As my last question, would you be able to suggest a few take-home messages to our viewers?
Feyi: Everybody has a right to exist, regardless of the conditions they are living with. Although we are talking about dementia right now, regardless of the condition, everyone has a right to exist and be happy, whether or not you think they are aware of it. They have a right to dignity, to exist, and to be loved, just like we wish for ourselves.
Try to meet them in their world and understand their mindset. On the medical side, let the doctors take over, but in the recreational spaces, if your loved one wants to do something in a different way, like play scrabble with the tiles in a different way, let them. If they are colouring and they want the sun purple, and you want it yellow — just let them be happy and try to meet them in their new world.
Thank you so much to this weeks guest, Feyi Raimi-Abraham, for taking the time to shard her unique perspective, personal experiences and insights into dementia as a caregiver, as well as the founder of The Black Dementia Company.
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Were you confused about any of the terms used in this summary?
Dementia — A disease/disability associated with ongoing decline in brain function. Types include vascular, Alzheimer’s, mixed, Lewy body dementia, etc.
Alzheimer’s — A type of Dementia caused by physical abnormal growths called plaques in the brain. There is currently no cure.
Caregiver — A support worker or person who helps a person with day to day activities, usually with those with illnesses or disabilities that may impact their ability to go about their day. They can be paid or unpaid, and may or may not have formal training, as they are oftentimes family members.
Logo by the Black Dementia Company.
Photo of clock by Debby Hudson.
People wearing masks during the COVID-19 Pandemic by Frankie Cordoba.