Island Treasures Mini Podcast: A Dementia Companion

This mini episode highlights key points from “Creating Connections with a Dementia Companion” featuring Gina Awad. Gina, who studied Dementia as part of her Health and Social Care degree, is a valuable resource for those living with dementia and their caregivers. She noticed common themes like fear and system navigation during her early information sessions.

Recognizing the need for clear guidance after a dementia diagnosis, Gina emphasized the importance of discussing dementia and providing accessible information to reduce stigma, and she founded the Exeter Dementia Action Alliance. In addition to her information sessions, she created a forum for discussions through her radio show, “Living Better with Dementia” on Sonic FM.  A show where her guests share resources, their passion, projects, information and stories. 

To further provide information on dementia in a non-intimidating way, Gina authored "United: Caring for our Loved Ones Living with Dementia," a book illustrated by the late Tony Husband that offers an easy-to-read perspective on the realities of dementia.

Gina's insights in this mini episode can be invaluable whether you're involved in caregiving or recently diagnosed with dementia.

Transcript

Thank you for tuning in to the Island Treasures Podcast.

We value the insights shared by our guests and hosts, but it's important to note that their personal experiences are intended to inform and encourage, and not to replace professional, legal, or medical advice.

With that, we are ready for today's exciting episode. Welcome to Island Treasures Mini Podcast for Caregivers. I am your host and caregiver consultant, Alison van Schie from beautiful Vancouver Island in British Columbia, Canada.

In the full episode called Meaningful Connections with a Dementia Companion, we met Gina Awad. The seed of caregiving was sown for Gina when she was just eight years old.

That seed lay dormant until later in Gina's life, when she started taking courses that led to her degree in health and social care. Part of that degree germinated that dormant seed when she started learning about dementia.

And before long, Gina was facilitating information sessions on dementia, and she founded the Exeter Dementia Action Alliance. Let's listen now to Gina sharing about the first session that she held.

I did my first session in Costa Coffee in Exeter, which was really, really enlightening. Some of the people that came to the session were living with dementia and just been diagnosed.

Some of them were caregivers that felt that they maybe had a family member living with dementia but hadn't been diagnosed, and just the general public that wants to know more about dementia.

So they ended up doing about 20 sessions in about six months, reaching lots and lots of people.

And what stood out to me, there were so many recurring themes, and the themes were, Thea, why are you telling me this when I should have heard this from my doctor? How do we navigate this system? They wanted to know more.

See, I can only give them the knowledge and information that I had, which obviously wasn't enough, but it certainly got people thinking, and it made me realize that a lot of the services in the community were very disjointed.

So that's when I created the Extra Dementia Action Alliance.

And through these sessions, Gina learned a lot from families and individuals who received the dementia diagnosis.

A dementia diagnosis is really, really tough. I mean, I say that, but I'm not living with dementia. So I can say that from my point of view, but I'm not living with it.

So I don't really know. But what I do know is the families that have struggled to be heard and understood, to be able to manage at times when the care becomes more complex, to support their loved ones in the best way they can.

And it doesn't stop with the diagnosis.

Once a person is diagnosed and their care partner, whoever that is, significant other, friend, there should be a clear pathway for people to navigate and to tap into as and when they need to.

There's no point arriving at a memory clinic, receiving a diagnosis, being giving a load of written information and saying, bye, thank you, we'll see you in six months. Have a read of that. I wouldn't want to read a load of information.

I would be processing a diagnosis emotionally, mentally, in every way there is. The last thing you want to do is read a load of documentation. And also, it's too scary.

So therefore, then people go on the internet, they look at all the stuff on there and they panic and they think, this is the end of my life as I knew it. There is a lot of life to be lived once the diagnosis is received.

If it's a timely diagnosis, if the person is diagnosed and it's timely, and when I say that, I mean, they find it early. So they don't wait until crisis point and then they're far down that pathway.

And then, you know, the support, for example, the medication wouldn't help and they're losing capacity. That's not what we want.

But we also understand globally that people are still frightened of that diagnosis, of that word dementia, because it is scary.

If we talk about it and get it out there, and there's a lot more media coverage on it globally, then it's going to bring it into the public sphere. And people are going to be talking about it more. And that's what we need to be doing.

So putting her words into action, Gina does talk about it, not only in the sessions she facilitates, but also in a radio show.

Here's more about her show that she's been hosting for nine years already.

It's a community radio show, and it's called Sonic FM, one of 6.8 FM.

Gina brings a variety of guests to her show, which is called Living Better with Dementia. And they talk about dementia, and they talk about dementia resources and supports.

Gina certainly is doing her part to reduce the stigma surrounding dementia, while she's also encouraging and supporting all those affected by a dementia diagnosis.

My drive is bringing guests on, all sorts of guests, all sorts of backgrounds, choosing the song, getting them to choose their song choices, and basically chatting to them. So it's a two-hour show, it's quite a long show.

So I could then have the 15-minute start, one guest for half an hour, have a little break, and then another guest for half an hour.

But also I wanted to reach out, especially around COVID time, I wanted to be able to do stuff on audio, which I sent to the producer, and then he wasn't managing to put it out online for me.

So I wanted to have all sorts of people on, not just people in the studio, although I do prefer the whole face-to-face when you've got that energy in the room.

But yeah, I just really, really love being able to showcase and share people's resources, people's passions, people's fears, people's projects. I've spoken to people with dementia and we've cried together.

I've spoken to family carers and we've cried and laughed together. I've spoken to charities, care home managers, all sorts of people and every single time, I just love it.

Before we wrap up this mini episode, I want to replay part of an earlier clip.

The last thing you want to do is read a load of documentation, and also it's too scary.

Gina has created a brilliant solution that provides information in an inviting and non-scary format.

It's a book called United Caring for Our Loved Ones Living with Dementia.

It's informative and filled with illustrations. Here's more about the book and how inviting it is to read.

So my book is a short read. We call it The Little Book with a Big Heart. So you could read this in an hour, but the stories will stay with you.

The stories are all true with the exception of one, which is a composite story I made up. So Tony Husband illustrated with black and white illustrations throughout. There's about 130 illustrations.

So there's actually not that much narrative, surprisingly, but the illustrations really accompany the narrative so well.

And I think one of the main themes running through feedback-wise was, especially for caregivers, is it was a really accessible read. It didn't take ages. If somebody wanted to pick up one of the stories and read it, it would take 10, 15 minutes.

Caregivers for any diagnosis, for any condition, are limited on time. So that's what has made United very accessible. And also bringing it to life through visuals and cartoons has also been a big draw.

And the good news for residents of England or Wales is that the book is available in every public library as part of the National Reading Well Book List.

For the rest of us, it is available on Amazon. Thank you for joining me today. I recognize how precious your time is, especially as caregivers.

And so this mini podcast is designed just for you. And when you have more time, I invite you to listen to the full episode with Gina Awad. If you need some supports, I invite you to check out alongside caregiverconsulting.ca.

And if you want more information from Gina, you can reach her through LinkedIn. If you have a question or comment about the show, you can text the show through the link in the show notes.

And if you've enjoyed this episode, be sure to tell a friend, especially if they're a caregiver. See you next episode.