S2 Episode 5: This is Dementia Transcript

Diane: Stephanie’s mother was a force of nature. She was strong and fiercely independent. But then the diagnosis came, and things changed. 

Stephanie: It goes slowly, but you see sort of markers of, it’s going a little bit down, it’s going a little bit down, it’s very depressing, you know, by definition, and that I was finding very, very hard to navigate.

Diane It’s incredibly difficult for the person diagnosed with dementia, but to anyone who has experienced this, it’s clear very quickly that friends and family are along for the ride.  

Stephanie: And I thought, this is where we’ve now hit the 180 degree switch in our relationship. Right. And that was a part where I just thought, okay, ugh, here we are.

Diane: This is dementia.

Diane: In this episode, we’re going to talk about a group of disorders that are characterized by a decline in thinking, memory, and reasoning abilities. We’re talking about dementia. 

More specifically, we’re talking about one of the most challenging yet important roles many of us will face: caring for a loved-one who has dementia.

Let’s unpack navigating dementia – digging deep into what dementia is, how the symptoms are diagnosed, and how, as a loved-one, you can support someone living with it, or, as a friend, how you can support someone who is providing dementia care.

As a psychiatrist, I want anyone experiencing any mental disorder – or helping someone who is – to be able to hear these stories and know there is a path ahead. My goal is to educate, de-stigmatize and inspire.

 I’m Dr Diane McIntosh. Welcome to PSYCHEDUP!

Diane: As our society ages, just about everyone will be confronted with dementia at some point, whether it’s receiving the diagnosis ourselves, having someone we love diagnosed or watching a friend or workmate confront the diagnosis in their family.

I don’t know about you, but for me, the thought of being diagnosed with dementia provokes fear, because there are so many unknowns associated with the diagnosis – it continues to baffle scientists, and so far, there’s no effective treatment.

Dementia is really an umbrella term for a collection of symptoms, but most of us only think about the most common symptom – memory impairment.

True dementia is a progressive disorder associated with brain cell damage, leading to difficulties with memory, yes, but also difficulties with language, judgement, organization, planning, and physical coordination.

Our guest today doesn’t have dementia, but loved someone who did.

Stephanie: My name is Stephanie. I am a lawyer in Vancouver. I’m in my late fifties. And I recently lost my mother who died at age 91.

Diane: It started back in 2017 when Stephanie’s mother had a stroke.

Stephanie: I always say that life can turn on a dime and it can turn on a dime in really great ways. You know, you meet the person you fall in love with and marry or it can turn on a dime in really serious and grave ways. And for me, it was good Friday of 2017.

Diane: After trying to reach her mother on the phone all day, Stephanie drove to her apartment, only to find her mother on the floor unable to get up. 

Stephanie: That was a day that our lives turned on a dime.

Diane: Stephanie’s mother spent two months in the hospital and then two months in rehab. 

Stephanie: And my recollection of that period is, you’re ever hopeful. I mean, my mother had beaten back cancer so many times. We thought, okay, with a little bit of muscle and a little bit of hell and her natural, true strength, she’s going to come through this, right?

Diane: But Stephanie was slowly realizing that this time was different.

Stephanie: I remember, you know, because they hand you the result of this test and you know, she had to draw a clock and, I dunno. She had it wrong, but I thought there was a way that it might be kind of right, but I thought, no, God, I’m really trying hard to avoid what is happening, right? Because you don’t really want to acknowledge that everybody’s world has just shifted on its axis and not in a positive way.

Diane: The tests were all coming back with the same conclusion…

Stephanie: dementia, dementia, dementia, dementia.

Diane: It was heart breaking for Stephanie. And she is far from alone. 

Currently, there are over 55 million people worldwide living with dementia. This year alone, just in Canada, 750,000 people aged 65 and older are living with Alzheimer’s disease and other forms of dementia. And unfortunately, these numbers are growing rapidly. The global number of people with dementia is expected to nearly double every 20 years.

Why this dramatic increase? It’s primarily driven by our aging population. Medical advances have helped us to live longer, so more people are reaching the ages where dementia risk increases significantly.

Each one of these numbers is a person living with a disease that will result in death. And behind most of these people is a network of caregivers – the majority of which are family.

Like Stephanie.

Stephanie: I knew nothing about this, zippo, I never saw this with my parents, because my parents both left where they were born. I had no template to follow. So this just sort of like out of nowhere and it’s like, okay, well welcome to caregiving.

Diane: Stephanie’s sister lived in a different country, so Stephanie was more or less it, and her mother needed a lot of help.

The province covered a few basics …

Stephanie: But okay, that’s maybe three hours of people a day. They’re another 21 hours and I can’t be there.

And it was heartbreaking because you can never quite make it work.

Diane: That’s the thing with caregiving. It’s almost always impossible to do perfectly, yet still  time consuming, often unpaid.  

In fact, every year, family and friends provide nearly 600 million hours of care to people living with dementia in Canada. To put that extraordinary number into perspective, that’s equivalent to nearly 300K full-time jobs.

All that work, to still walk away at the end of the day feeling like you didn’t do enough – like there just aren’t enough hours in the day.

Stephanie: I couldn’t quit my job. I couldn’t move in with her. But the feeling, uh, when I would go there, when I would leave her and she’d be sitting at the dining room table and I’m leaving to go, I don’t know, go out shopping, meet friends, what have you, of her sitting alone at a table. I mean, you know, you, you’ve gotta be a cold person to sort of feel okay about that.

Diane: Stephanie was running two households with bills and groceries and laundry, while trying to eke out a little bit of quality time with her mother on top of that.

Stephanie: So you’re trying to do all of this with, I’ll be frank, for myself, increasing feelings of resentment and exhaustion.

Diane: Then there are all of the emotions of caring for a person that you love who is changing. Stephanie’s mother was still there, she was alive, but the dynamics were completely different.

Stephanie: I remember the moment where it really hit me. It was right after my husband had died and I went to tell her, and she adored my husband and they were thick as thieves, right? And I went to her nursing home, took her up in her wheelchair to her room, and I said, look, I’ve got something to tell you. Um, my husband died. In that moment, I wanted my mother so badly ’cause I didn’t know, I had no idea how I was gonna get through this one. Right? And my mother started to cry and I thought, no, no, no, no, no, no, no, no. I’m not here to comfort you. You’re here to mother me. And I thought, this is where we’ve now hit the 180 degree switch in our relationship. Right. And that was a part where I just thought, okay, ugh, here we are.

Diane What an incredibly difficult place to be. 

If you’re listening to this and finding Stephanie’s story familiar at all, we’ve got some resources that can help in the show notes. We’re about to talk about treatment and care options, but before we get there I wanted to ask a favour. If you like what you hear, please rate and follow the show, even leave a comment if you’re so inclined. It really helps other people find us. 

Diane: So this seems like a perfect segue to my wonderful friend and colleague, Dr. Randy Mackoff as you’ll remember, Randy is a PhD psychologist and an expert in talk therapy, while I, as a mere psychiatrist, tend to focus on prescribing medications for mental illness.

So Randy, so great to have you back in the therapist chair.

Randy: Well, thanks for having me here, Diane. 

Diane: So I think our chat today is really going to focus on your particular expertise because it’s about supporting individuals that are supporting other people. 

So now you have someone who’s in front of you who says, my loved one, my parent, my spouse, has been diagnosed with dementia. I wanna ask you how you help them to start navigating through the grief that’s associated with that,

Randy: So, you know, there, there is no magic to this. Um, in terms of providing support for caregivers and, and helping caregivers and loved ones, it is first of all, really important to set an environment where the person who’s coming in to see me feels very safe. Where they don’t feel judged, where they can explore the conflicting feelings and thoughts that they’re having. And those conflicting feelings and thoughts often start with everything from sort of an extreme amount of tenderness to an extreme amount of anger and everything in between. And under those conditions it is quite isolating because to, for them to express the loved one, to be able to express to friends or to other family members this range of emotion. They worry about being judged and in some cases they really do feel judged because it’s, you know, they’re told, don’t feel a certain way, be a different way. Think about this in a different way as opposed to going through this grieving process. In terms of the science out there, there is a lot of information that this is, in many respects, a pre-death grieving process. There is definitely loss that’s taking place, and this is never easy to deal with, but in the right environment and setting boundaries with friends and family members, this can be really something that is beneficial to the person and helps them through this very difficult process.

Diane: I think that was really beautifully said. Randy and I think encompassed so many emotions that people who are living through this or have lived through this will understand.

The importance of self care when people are feeling really guilty, just to step away and do things for themselves and make sure that they take that time.

How do you, how do you speak to your clients about that?

Randy: Yeah, for some, not for all, but for some, for many, it is a real struggle because of maybe some family influences, some cultural influences, some religious influences, personal beliefs.

Some people feel that their duty is to be there for their loved ones 24×7, and that they have to let everything else in their life go by the wayside. So what happens in those situations is all of a sudden the person gives up their job and they’re with their loved one all the time, and they also tend to sometimes disengage from other relationships, or to other loved ones in their life that it just, it fades away and what happens is that when we become over focused on any one matter, we start to neglect ourselves. And when we neglect ourselves, we’re unable to basically deal with the troubling and distressing emotions that we experience. And then all of a sudden we’re actually not even being helpful to the person we’re trying to give care to because our tolerance is low, our annoyance is high.

And we talk about this and I pose certain questions that hopefully allows the person to reflect on what they’re actually experiencing and how this is impacting their life. Because remaining connected is essential for coping in terms of being a caregiver for someone with dementia.

Diane: It is a perfect way to end on that point because I was going to ask you about peer support and particularly I’ve had a very positive experience in my own family with the Alzheimer’s Society. So organizations really that are there to help people who are supporting someone through dementia, but particularly the individual themselves, who is the caregiver, the supporter to know that’s normal. Or you know, you’re frustrated with this and that makes sense, I’d love your thoughts on that, Randy,

Randy: Oh, absolutely, Diane. It’s exactly what a lot of people need. Sometimes people are very embarrassed about having a family member who’s been diagnosed with dementia, whatever the source of that dementia is.

Diane: or are they embarrassed of not? Being able to, maybe it’s of the family member having dementia – it’s so common now not knowing how to handle it or the emotions that come with it.

Randy: Probably all the above, I think. Yeah, most definitely.

Diane: Support can come in many different forms. An excellent therapist, your family practitioner, as well as peer support in the community.

Randy: It completely. And you know, one of the struggles for a lot of people, and the supports really can help with this, is there is a point where it is, I will not say impossible, but extremely difficult to look after the person with dementia and that decision of moving that person from their home. And it feels like it’s against their will is a really traumatizing decision.

And I don’t use the word lightly, but it is really, really a very difficult decision because the family member feels like they’re betraying their loved one, and it’s important for them to be able to see that they’re actually supporting their loved one. And facilitating even greater dignity for the individual.

Diane: This is something Stephanie experienced. She had to move her mother out of her own home, and like you say Randy, it was a necessary choice, but that didn’t make it easy.

Stephanie: She loved her apartment, that was her pride and joy and we never told her that we sold it. And I think that’s another thing that comes when you’re caregiving, is a lot of guilt for a lot of things. Some reasonable, some unreasonable, but sometimes, uh, a lie is a kindness. And up until the day she died, she thought she had her apartment, which she thought she was leaving to us and we decided, no, we’re never going to tell her. So every time my sister would come to town, she’d say, well, are you staying at my apartment? Have you seen my neighbors? Yep. Yep. The apartment’s great. Yep. I clean it. I pick up the mail regularly. But you just feel, oh God. I mean my mother, I mean, telling a lie was a cardinal sin growing up, right? So there you are, lie upon, lie upon lie, and you just think, oh man, um, hope she forgives me, you know?

Diane: It’s an incredibly difficult situation to be in. But Stephanie’s mother went to live in a private care facility – and the apartment helped pay for it. Under different circumstances, I’m sure her mother would understand. 

I saw how much stress my mother in law was under every single day. Being under chronic stress, all the emotions that go around being a caregiver, and we know burnout rates are very, very high, and sometimes it could be. Years of living under that kind of pressure that makes your brain vulnerable to depression, to anxiety, and when that becomes so significant that it’s impacting your ability to function, 

Diane:  Here’s how Stephanie describes it:

Stephanie: The thing about this kind of work, when you’re dealing with somebody who is old. And has dementia. There is no fix. It is not going to get better. It is a steady downward trajectory, and as you’re seeing that, and it goes slowly, but you see sort of markers of, it’s going a little bit down, it’s going a little bit down, it’s very depressing, you know, by by definition, and that I was finding very, very hard to navigate.

Diane: Of course, she did. Stephanie was in an incredibly difficult situation. 

She didn’t seek professional help at the time, but she has since said it would have most likely helped. And, I’d like to add, for her medication might have been valuable. Taking medication is not a failure – it’s not a pull yourself up by your boot straps kind of situation. It’s a recognition that sometimes the challenges that we face are beyond what we can manage on our own. And there’s no shame in that because I think as caregivers, we want to be our best selves, and you can’t be your best self when you’re really significantly depressed or anxious.

Randy: Absolutely. The other thing, Diane, that that does come up a fair amount I mean, there’s so many issues that arise here, and I don’t think I, I think we should in my opinion, we should be under no illusion that we can really cover all the issues and so some caregivers may be listening to this and feeling, ah, but what about this? And, and this feels kind of incomplete, this discussion because it really involves so many facets of life, ranging from, you know, how do you say goodbye to, um, you know, this person I was married to for 40 years and, and they’re not there anymore. And someone else has shown me emotional connection. And now I think I maybe am falling in love with somebody else and the feeling of betrayal and all those types of issues that arise. But the other thing that does come up, is the person with dementia sometimes can experience some very significant psychiatric symptoms and I’d love to hear from you, Diane, because this is one of your areas of expertise is with psychiatric symptoms, with the person with dementia. What is the best approach? 

Diane: Yeah, it is a complicated response and I’m really glad you brought up the fact that you know, we’re scratching the surface here of trying to help people to understand it is complicated, but there are supports out there. So, um, not only can people who have dementia experience depression, anxiety, agitation, but they can also have frank psychotic symptoms so they can believe that their loved one is an imposter, their care provider is actually no longer their wife. Someone is entering their home and stealing things, maybe that their care provider is poisoning them. So many people fear giving medication to older patients, but it’s really important sometimes to help that person to be settled and be able to be comfortable.

Diane: Dementia is a diagnosis of exclusions. It was really critical to rule out treatable medical issues first before going with a dementia diagnosis. And you have, we don’t have any exact objective tests that say, absolutely you have dementia. So we have to make sure that we rule out any physical health or mental health disorders that are treatable, first and foremost. So that’s the most important thing. Then reviewing medication that that person’s taking, that may also cause symptoms that could seem like cognitive impairment or could provoke cognitive symptoms. And sometimes people are on multiple medications, older patients, they’re seeing multiple people and the fact that the medication actually could provoke cognitive symptoms is missed because they’re overprescribed. So a review of all of their health and a review of their medication, critically important.

What we know is that it is possible to treat depression, anxiety, and manage dementia at the same time. We do not have any treatments for dementia that actually stop dementia from progressing. I believe that they’re coming, but we do have treatments for depression, for anxiety, for psychosis, for agitation that really can help settle patients down and make the dementia more tolerable for them and for their loved ones. Agitation related to dementia can be really distressing for the individual and for their care provider, but there’s a lot of inaccurate information about using medication to treat those symptoms. Now we have an antipsychotic medication that’s actually indicated for the treatment of agitation associated with Alzheimer’s and other dementias.

So it’s important to know that older adults usually need the same doses of antidepressants, of antipsychotics that young people do, but we tend to start lower, go slower, but still aim to get all of the symptoms managed. And we also have to be cautious about falls. So choosing the medication that can make people too sedated or impact their blood pressure, really important to make our choices carefully.

Randy: That’s great, Diana. You know, and one of the things that’s going through my mind is don’t be afraid to ask questions and then really listen to what the physician has to say and enter into a really frank, open discussion for the best treatment of the person with dementia.

Diane: I think it’s a great point, Randy, and there’s some awesome geriatricians, geriatric psychiatrists out there working with families and also all of the, the nurses and nurse practitioners that support them as well and, and work independently in giving support to caregivers and people with dementia. Everyone’s time is so limited. So when you go into those appointments, jot things down, bring your list of the challenges, because then you know you’ve got this very quick appointment and you forget and you may have to wait a long time. So keeping track, journaling, what’s going on. Maybe having your list of these are the greatest frustrations or the what do I do list so that when you go in, you can go, aha, okay, here’s, these are the things that I would be really disappointed if I didn’t ask you. And I know that my appointment time is limited, so here they are and, and you’re right to stand up, advocate for yourself and for your loved one.

Randy: Excellent point. but one of the other really significant discussions that arise is, especially if it is a biological family member, the family member is thinking, they’re looking at a mirror to their future, and they often start to live in fear. And that is something that they really need to be able to talk about because keeping it in one’s own head. That thought doesn’t go away. It’s really important to be able to explore that, talk about that and have some good understanding of how to be able to be in the present and to be able to plan for the future.

But I think that this is a really important topic that therapists, psychologists, counselors, social workers, should really be talking about with the person who’s come to them for assistance.

Diane: I think it’s just a brilliant point that I hadn’t thought about bringing up, And the fear that comes from that, that is often unspoken. And I don’t know if it’s a feeling of maybe you know, that’s their illness and I shouldn’t make this about me, but it is about you. If it’s a biological loved one, they’ve had something that, you know, is it genetic? What can I do? And they tend to keep all of that inside and talking about it, I think is very freeing. So thank you for bringing that up.

Randy: Thank you. 

Diane: That’s always a delight. Randy, thank you for spending time with us.

Randy: Have a great day. 

Diane:  We all know there are so many misconceptions and misunderstandings about mental illness, that in every episode I want to share a snippet of something I think you should know. I call it my shrink wrap.

We’ve talked about all of the difficult moments that come with dementia. But it’s important to remember that out of terrible things, good things can come. While providing care for your loved-one living with dementia is one of life’s greatest challenges, it’s also one of the greatest gifts you will ever give, because you’re helping them to end their life with love and comfort, with dignity and grace.

Taking care of yourself is not selfish, it’s absolutely essential.

Research is advancing and we are on the cusp of actual disease modifying treatments, but for the foreseeable future, millions of caregivers are the backbone of dementia care today.

For caregivers- what you’re doing really matters. If you know a caregiver, check in on them. Offer some specific help-rather than, “Let me know how I can help”, ask “I’d like to bring you dinner. Is Tuesday ok?” Those small gestures can make an enormous difference.

Every act of care giving is an act of love, and I think we can all agree, that’s something the world needs more of right now.

Stephanie says it best:

Stephanie: There’s so many people my age who are going through this, and I think it’s healthy to talk about it. It’s healthy to talk about how it makes you feel. And you know, I feel like a lot of us are ill prepared, and 

You’re not gonna be perfect, but you’re showing up and that’s huge. And you know, your parent would probably be the first one to say, well done you, I raised you right. You’ve got this.

Diane:  Absolutely, you got this.

If you know anyone who might benefit from this episode, please share it with them. We also have extra resources in the show notes. Please take a look and use anything that might help.

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Our producer is Tori Weldon. Steve Pratt is our consultant. Sound design and our original theme song is written by Mark Angly of Square Wave Sound.

Until next time. I’m Dr Diane McIntosh, thanks for listening to PSYCHEDUP.