Welcome And Why This Matters

SPEAKER_00 0:06

Welcome back to Healthy Mind Healthy Life, the space where we slow down for conversation that quietly matters. I am Gnasish and today I am joined by Jill Aiken, the founder of For Better Minds, whose work centers on cognitive stimulation therapy for people living with mild cognitive impairment and dementia. So, in this conversation, we are going to talk about something most families face but rarely have language for. How to be loved, one whose mind is changing, and what cognitive stimulation therapy really is, and what it means to keep showing up for someone who cares, patience, and love. Even when the road quietly shifts under everyone's feet. So, Jill, I welcome you to the show. Thank you. Thank you for having me. Wonderful. So and I want to ask you, uh like what was the moment or maybe the season when this work first chose you? Like when did you realize that the way the world was talking about cognitive decline wasn't the way you wanted to talk about it?

SPEAKER_01 1:19

Yes. Well, that's a really good way to put it. Uh, I've been working with people with dementia for uh over 10 years now. And I started with actually owning a home healthcare company. So I was placing like healthcare aides or personal support workers and nurses uh in kind of a one-on-one way in people's homes with people living with dementia and trying to keep them at home for as long as possible. So I was always very interested in dementia and really wanted to uh look at innovative ways that we could care for people and how we can improve our care. And uh I found it very difficult uh, to be honest. And then in 2015, I discovered cognitive stimulation therapy. I heard about it at a conference, and uh I went back home and I researched it and I saw the huge evidence base for it. I saw that it's actually scientifically proven. Yes, it works, it does improve cognition. So I really felt like this was something that I could use that has been proven to work to really help people with dementia so it can slow the progression of dementia and really help people uh live a better life. And uh I I left the home care business in 2022 and I decided, you know, cognitive stimulation therapy was such a compelling uh case that I had to do it full-time.

SPEAKER_00 3:02

That is something, you know, these experiences that happened with us and these little things and the the things we learned from conferences and all, this really put a huge impact on our life. And I believe you had a turning point when you went there and you realized those things. Yes, I get it.

Fear And The Apathy Trap

SPEAKER_00 3:22

It's so, you know, Jill, when most people hear the words dementia or cognitive impairment, the first feeling that lands is often fear, sometimes grief, sometimes a quiet sense of helplessness. And from that fear, we tend to assume the worst. And nothing and that nothing can be done about it, and the person we love is already slipping away and all that, all that. So, what's a misconception about cognitive decline that you would want every listener to know today?

SPEAKER_01 3:53

Well, I think that the fear is real. The way I, you know, from what I have seen is that uh the research that's coming out in the last five years, we're really getting a handle on what is causing dementia and the things that we can do to prevent it, or at least push off a diagnosis even for five or 10 years, and then to slow progression once we do get it. I think the difficulty with it is that when you do get a diagnosis or when your cognition is dropping, that there is an apathy about it. Uh, you're not on fire to really, you know, make the changes in your lifestyle that you have to do in order to turn it around or to slow the progression. So people are often, you know, just kind of feeling okay about things. And I have seen just even in my clients that I'm working with with cognitive stimulation therapy, I know their neurologist has told them, look, you have to get back to exercising every day. And the person will say yes, but they forget to do it, or they're just kind of, you know, feeling good and they either forget to do it or just they don't want to get back into it again. So there is almost like this uh nasty trick about cognitive decline in that there's an apathy that comes over people. And that's the last thing you need is apathy in order to change your lifestyle, to make significant changes in the biochemical pathways of your brain. Right. You really have to get in there and start exercising and really change your diet and uh to, you know, bring it down, bring inflammation down in your brain. And you can't do that if you're apathetic or if you could uh if you care very little about it. That's that is true. Right. So people around you are caring very much about it, but they can't make you change your behavior. It's you that has to do it, and and that is that seems to be the biggest difficulty.

SPEAKER_00 6:11

That is that is so true. And you know, it this reframing matters so much, because the moment we replace fear with curiosity, the whole uproad softens it it all also builds a trust within the process. And when you see the results, that trust keeps on getting stronger and stronger. So uh and in your experience, how does that fear, like how understandable, sometimes get in the way of the things that could actually help a person living with it?

SPEAKER_01 6:50

Well, I think okay, so like I said, there's been a lot of research coming out in the last five or six years. So our understanding of things is that we really have to be under uh, or at least once we get a diagnosis, we really have to uh change things in our lives, like we have to change our eating and we have to change our our exercise, and we possibly then have to do a lot of testing and see what's going on with our body that is, you know, that's driving our brain into this pathway that's uh giving us neuro atrophy. And so I think that there's that understanding is not widespread right now. So there are things that we can do to help ourselves, but a lot of people don't know about them. So I think that understanding is lacking and it's not widespread, and it's not part of our healthcare system as well. You have to do a lot of research in order to find that kind of help and intervention.

SPEAKER_00 7:56

That is that is so true. And you know, we stop seeing the person the seeing the person as something lost. I think after this, we start seeing them as tis you're in a different way. Yeah. And you know, you work with a lot of people in their early or middle stages of changes and the with families working beside them. What are the deeper patterns you've seen, like the emotional, relational, identity level patterns that often show up underneath the more visible cognitive ones?

What Families Feel Underneath

SPEAKER_00 8:33

Mm-hmm.

SPEAKER_01 8:34

Well, uh, what I have seen, it is a little bit wide-ranging in that some people are very aware of their shortcomings, you know, of their cognitive shortcomings. I'll have some clients that often say to me, you know, my brain doesn't work like it used to, or um, you know, I'm not as smart as I used to be, or I'm fearful of um, you know, different situations because I know my brain doesn't work. So they are very aware. They have a lot of self-awareness. And then other clients that'll have that I will ask them, you know, uh sometimes in our intake, you know, one of the questions I will ask is just so what are the challenges, you know, you feel that you're facing right now? And they'll say, none. I'm feeling great. So it is wide-ranging. Some people have a lot of self-awareness of what's happening with them, and other people are not. Some people are feeling great, and then other people uh really show depressive symptoms about their loss of cognition and they're losing confidence in themselves. So it is wide ranging, and I would say definitely from families from what I see is that people are people are feeling uh frustrated and possibly resigned and don't have a lot of hope from the face.

SPEAKER_00 10:04

That is that is that is that is very true, but I believe uh this answer and this such an honest answer is gonna have uh give hope to those people who are thinking that everything is lost now. Yeah, there are ways that a person can feel better, there are ways you can help someone you love.

SPEAKER_01 10:26

And not everybody, not everybody declines at the same rate.

SPEAKER_00 10:31

Yeah, that is that is very true. It depends on person to person.

SPEAKER_01 10:36

Yes, I know some people that drive for a very long time after uh cognitive decline starts.

SPEAKER_00 10:43

Yeah, yes, yes, absolutely. And like you are reminding us that there's a whole emotional inner layer that doesn't just stop because of the cognitive picture begins to shift. Absolutely. Yeah, it's that's so important for everyone of us to know. So, you know, for someone listening tonight, right now, who is quietly noticing changes in a partner, parent, or sibling, what does the cognitive stimulation therapy actually look like in real life?

SPEAKER_01 11:12

Okay,

What Cognitive Stimulation Therapy Is

SPEAKER_01 11:13

so what the program looks like, it was so it was created by, it was actually created by academics at the University College London in the UK. And it was created to reduce the symptoms of mild cognitive impairment and early to mid-stage dementia. So it was put together to stimulate people's minds and to improve their cognition. So to it was really directed at um language fluency, memory, and word finding. And what they saw after all the years of trialing it, they also saw that it improved executive function and it improved people's confidence and their quality of life, their mood. It even helped uh women who were uh had depressive symptoms. So it is what what has been shown, just um to kind of jump to another area, just over the last kind of six or seven years in the scientific literature, it showed that cognitive stimulation, so actually engaging the mind, is quite important or exercising the mind. So there was a a huge study that came out of China a couple of years ago, and they looked at like 40,000 people. So it was huge over 10 years. And they were looking at the strength of people's memories before the program, before the 10 years, sorry, and then uh after the 10 years. And they saw that the people who had the best memory after 10 years, so they had an excellent diet or they had they did better with diet, but also that they exercised their mind or they engaged their mind a couple of times a week. And so this was really surprising to even the researchers. So what I would say, okay, okay, and then number three, uh, the third most important um element in that, in that research study was physical exercise. And then number four was social engagement with people. So that's I, you know, I call those the four lifestyle pillars of cognitive health. So good diet, exercising the mind, exercising the body, and social connection. And so what I would say to people who are noticing changes is that um I would look at those four aspects and try to improve those four aspects in someone's life. And then that is yes, and so then for cognitive stimulation, that's where cognitive stimulation therapy comes in because it is structured exercising of the mind with a facilitator, and um, and it really gets the job done.

SPEAKER_00 14:08

It does, and it is beautiful that you're mentioning it, and those four pillars actually sounds like a great deal. It it is so it is these things are so easy, they put so much less less pressure on anybody who wants to start today. Yeah, and this distinction also itself is so important, Joel, because most families aren't being unkind, they're just being terrified and trying to do something, anything to hold on to. And I believe you have given them a softer and more dignified way to be present. Yes, yeah, and you know, I want to ask you like for a practical version, for a listener tonight, a son, a daughter, a partner, anybody who wants to do something supportive this week, what is the one simple practice that they can begin with?

A Simple Practice You Can Try

SPEAKER_01 15:08

Well, something they can do um they can engage their loved one in a conversation. So cognitive stimulation therapy is a conversation-based therapy. And a lot of families ask, you know, what can we do at home between sessions, or what can we do at home uh, you know, when my loved one is not working with you? And uh I often say something like, okay, you can take a newspaper and you can read a news article with your loved one. And, you know, a short news article and possibly something that is not traumatic. It's hard to find news that isn't traumatic. But ask them what they think about the article and ask them different questions about what you would do if you were one of these people? You know, if it's a say if it's an article about maybe something in law or something in the courts, you could say, for example, you know, what would you do? How would you have ruled in this case? What would you have done? You know, would you have even uh represented this this person or or this criminal? What would you have done? Give them some hypothetical questions, some open-ended questions, and allow them to answer. And I would say give them your undivided attention. So turn off the television, turn off a radio or anything else, and maybe even sit at a table and clear the table and really uh give the person undivided attention and ask them open-ended questions. And don't refute them when they uh when they answer, if you know the difference in the answer. Just let it be a no right or wrong and really engage them for 20 minutes or half hour. You can even go through, take out a photo album and go through the photo album and ask, you know, some open-ended questions about that.

SPEAKER_00 17:10

Yes, and I believe that is a beautiful thing to do. And you know, these are small, small, tender things that we can all do for somebody, so our loved ones, you know. It is, and I'm, you know, you know, I believe what you have mentioned, it is just about actively being there and listening. Mm-hmm. Yeah. And you yeah, and you're reminding us that the work isn't about fixing what can't be fixed. It is about just staying in the relationship through what is changing. And I believe that is, yeah, it it itself is such a beautiful medicine that no clinic can offer.

SPEAKER_01 17:47

Mm-hmm. Yes, and you can play chess or you can play checkers or a good board game or do a puzzle. You know, do it without any distractions around and really put aside some time to dedicate with your loved one.

SPEAKER_00 18:02

Absolutely. And you know, uh the person you are working with shifts. So how does your own emotional landscape, like so does your own emotional landscape? So how do you support families through those harder seasons?

SPEAKER_01 18:17

Mm-hmm.

Respite And Caregiver Survival

SPEAKER_01 18:20

It is uh really difficult, and uh I'm the first to admit that. And back when I was in home care, one of you know, something I was thinking about all the time was how to support the family caregiver. And I was always a huge advocate in respite for the family caregiver. And when you're still trying to keep someone, a loved one at home with dementia, it is a 24-hour seven, you know, it's a 24-hour a day job because you have to be vigilant often in, you know, overnight that the person doesn't leave the home, right? You have to be uh awake or at least alert uh right around the clock. So I can't emphasize enough the importance of some respite to maybe get a caregiver in. And one or two hours is just not enough. I would say a four-hour minimum. So the person and and on a regular schedule. So let's just say if a wife was looking after a husband and she knew a caregiver was coming in, maybe let's say Tuesday afternoon, Thursday afternoon, and Saturday afternoon. And she could put all of her own medical appointments or or different social appointments in those times and know that she does have that respite and that free time for herself. Because this situation can go on for years and years and years. So the caregiver needs as much support as possible in order to endure uh all the years that is needed to keep someone at home and and to be energized. And um, you know, people use the word self-care, but to really make sure that the caregiver is getting a lot of care as well.

SPEAKER_00 20:15

That is that is a beautiful approach, I would say. And you know, it gives us permission. It gives us it it's that kind of permission that many caregivers don't realize they need. Like you have just remind him that reminded him that they can love deeply and still need still need rest. They can show up beautifully for someone else, and they still need someone to ask them how they are really doing.

SPEAKER_01 20:48

Absolutely.

SPEAKER_00 20:51

Yeah. So, and for a listener who recognizes themselves as a quiet caregiver, who maybe hasn't given themselves permission to feel tired, scared, or sad, what would you want them to know, Julian?

SPEAKER_01 21:06

I would want them to know that they definitely need regularly scheduled respite. Just like I said, they have to have it, or else they're not going to be able to keep going. So they have to find some way to give themselves a break. And that I would say that their adult children and, you know, even the people around them will not advocate for them. Many will not. So the person, you know, let's just say if it's a spouse, they have to advocate for themselves. They have to give themselves permission to get that respite. They can't wait for someone else to really encourage it to happen because other people don't understand the caregiving burden. Other people don't understand what it's like to not be able to get a break from anything.

SPEAKER_00 21:58

That is such a beautiful thing to. Say thank you so much for saying that to us, Jill. It was so beautiful. And like you said, and like I said, it is you just have to be there. That can make a huge difference.

SPEAKER_01 22:14

Yes.

SPEAKER_00 22:15

Yeah.

Courage To Ask For Support

SPEAKER_00 22:16

So, Jill, one last question before we close. For anyone who is listening today, are just quietly carrying something they have never said out loud. Maybe a fear about a parent, maybe they own quiet worry about themselves. Maybe a long, exhausting caregiving season they've never felt invisible inside. What would you want them to hear from you today?

SPEAKER_01 22:40

I would like them to hear that they are heroic and that caregiving for a loved one is, you know, selfless. And it's one of the most wonderful things you can do in your life. And uh, you know, showing that love and care for someone else is, I think, the highest activity you can devote your time to. And I think the whole world thanks you. So that's what I would like them to know. And I again, I'm going to circle back because of my experience looking at families and looking at primary caregivers, it's really difficult uh to get a break. And I would really encourage them to engineer that into their lives. Something they can look forward to as well. Right.

SPEAKER_00 23:33

That is so good. That is that is that is absolutely beautiful. And you know, I think I think the mind may change, but the person doesn't disappear. And the way we keep showing up gently, patiently with love is the difference between a season of loss and a season of connection. So Chill, before we let you go, I'd love for our listeners to be able to find you, learn more about you for better about for better minds, and continue this conversation with you been yawn tonight.

How To Find Jill Online

SPEAKER_00 24:10

So, where is the best place for them to connect with you in your work?

SPEAKER_01 24:14

You can go to my website, which is forbetterminds.com, and you can contact me and um enter an inquiry, and we can chat to see if your loved one is a good candidate for cognitive stimulation therapy. And the one of the very few stipulations I have is that I I only speak English. So I I'm serving the English-speaking world through Zoom. So it doesn't matter where you live, but you can benefit from cognitive stimulation therapy.

SPEAKER_00 24:49

That is absolutely beautiful. Thank you so much for sharing that with us. And I will make sure to include all these details into the show notes so that a lot of people can reach out to you. And you know, we will make sure that this goes in the show notes so that any family, any caregiver, any listener who felt something landed with them today can find their way to you easily.

SPEAKER_01 25:13

Okay, great. Thank you so much. Lovely to speak.

SPEAKER_00 25:16

Yeah.

SPEAKER_01 25:17

Okay.

SPEAKER_00 25:17

And uh, you know, thank you so much for sitting here with us. And dear listeners, if something Jill said tonight quietly stayed with you, don't rush past it. Sit with it. Maybe call someone you love a little more slowly today. Maybe forgive yourself for the day last week when you didn't have the patience you wish you had. Because the truth is, most of us are walking around carrying more than anyone can s the people we love and the quiet fears about losing one. And in that space, gentleness is everything. So until next time, take care of yourself and take care of each other.