The Heart of Dementia Care: A Social Worker's Perspective

In this bonus episode of Your Complex Brain, we delve into the world of dementia care with Maria Martinez, a dedicated social worker at UHN’s Memory Clinic, part of the Krembil Brain Institute. With nearly 25 years of experience, Maria shares her journey from studying anthropology and sociology to becoming a vital support for patients living with dementia and their families.

Maria highlights the unique challenges faced by those dealing with rare dementias and early-onset cases, emphasizing the importance of personalized support and the significant financial burdens these families often encounter.

Despite the challenges, Maria finds hope and fulfillment in her work, learning continuously from the resilient families she supports. This episode offers a heartfelt glimpse into the daily efforts of a social worker dedicated to making a difference in the lives of those affected by dementia.

Featuring:
Maria Martinez has been a social worker for nearly 25 years. Most recently, she has worked with the team at UHN’s Memory Clinic, helping patients living with Alzheimer’s and dementia, and their families, navigate their diagnosis and community support.

Additional resources:
Dr. Carmela Tartaglia’s interview on EP 1 of Your Complex Brain – ‘The Quest to Solve the Concussion Problem’
 Risk Factors for Alzheimer’s and Dementia (video)
UHN Memory Clinic
Schlegel-UW Research Institute for Aging (RIA)
Dr. Laura Middleton’s research project - DREAM (Dementia Resources for Eating, Activity, and Meaningful Inclusion
Dr. Laura Middleton’s research project - DICE (Dementia Inclusive Choices for Exercise)

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.

The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.

Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil

To get in touch, email us at krembil@uhn.ca or message us on social media:
Instagram - @krembilresearch
Twitter - @KBI_UHN
Facebook - https://www.facebook.com/KrembilBrainInstitute

Thanks for listening!

Transcript

[00:00:00] Maria: 0:00

My name is Maria Martinez and I'm a social worker at the University Health Network Memory Clinic, part of Krembil Brain Institute. My role as a social worker can be very complex. I am engaged in many, many activities. Primarily it's to provide counselling and education to the families and patients that I work with.

[00:00:20] Maria: 0:22

Another big component of my job is to ensure that families and patients are referred to community resources and any other resources that would be very helpful in their journey with dementia. I started in social work in a way that was unexpected for me - I did an undergrad in Anthropology and Sociology, and I didn't really know where I was going to go with those degrees as an undergrad.

[00:00:49] Maria: 0:51

I started exploring different options, and Social Work seemed like something very, very interesting to me, as I'm very interested - and have always been very interested - in working with different populations, and really being in a helping profession. So, I thought it was a good fit for me. for the person who I was and wanted to become.

[00:01:10] Maria: 1:15

And so, I applied to the Faculty of Social Work and was able to get in. So, that's how my career started. I have been working at the University Health Network Memory Clinic since 2007. And my day-to-day work is to see patients when they come into the clinic. So, we have two behavioral neurologists, and a geriatrician who works in the clinic.

[00:01:34] Maria: 1:41

And so, I will see patients when they come in along with them. So, we work jointly. There's also a part time nurse that works in our clinic. And so, I'll often see patients with her as well. Working with Dr. Tartaglia and the other physicians here, Dr. Inglesson and Dr. Tang-Wai, has been so rewarding for me.

[00:01:56] Maria: 2:05

They have taught me so much about [00:02:00] everything I know in dementia. They have been patient. They have been kind. And they're just brilliant clinicians. So, I'm very thankful to be working with such wonderful doctors. COVID has really changed the way that we operate in the clinic. So many patients are now being seen virtually.

[00:02:19] Maria: 2:29

So, part of my day will be to see patients virtually with the physicians. And then the majority of my time is really spent speaking with families after their appointments and making sure that they have the necessary information about the diagnosis and making sure that they're connected to community resources.

[00:02:39] Maria: 2:50

The types of patients that I see, it's always dependent on who the physicians are seeing. Our clinic tends to be quite specialized in some of the rare dementias. So, we often see many people with more rare dementias, and many of them tend to be younger. So, we see early onset dementias, which means under the age of 65.

[00:03:03] Maria: 3:15

And we see other dementias such as progressive supranuclear palsy, cortical basal degeneration, posterior cortical atrophy, and frontal temporal dementias. And with that, under that umbrella comes some of the language disorders. So, it does tend to be quite a specialized clinic, and We see people with more rare dementias and that takes up probably the majority of my caseload.

[00:03:29] Maria: 3:40

The ways that I try to help my patients and families is really to start where they're at. A lot of the families are at different parts of their journey when they show up for their first initial consultation here. Sometimes people are in the very mild stages of their illness. Sometimes we see people for the first time who already have very, very advanced disease.

[00:03:51] Maria: 4:07

And so, it depends on where they are in that illness trajectory. But I really start where the families are at.

[00:04: 4:16

00] My work often consists of figuring out what is the most important piece for them that they need support with. So, if it's just learning about the illness and what to expect in the future, then education is what is provided.

[00:04:17] Maria: 4:33

And I'll often link them with resources such as the Alzheimer's Society in the area where they live for continued support and education. If they are requiring assistance with day-to-day care and they're exhausted or fatigued from providing the care to the person with dementia, then I'll set up home supports for them so that they can have assistance with that aspect of care that they're finding most difficult.

[00:04:43] Maria: 5:01

So, it really depends on what their needs are and what they're able to communicate to me. That is their biggest concern. Oftentimes my role as a social worker is to work with caregivers. So, whether it's a family member or a friend or a paid caregiver, my role primarily in the clinic as a social worker is to work with the primary caregivers who are looking after someone with dementia.

[00:05:07] Maria: 5:30

It's an interesting role that I have as a social worker here because the patient who comes in, who has the dementia, is my patient. But most of the work that I do is with the families and the caregivers who are looking after that person with dementia. The needs of the caregivers vary because it really depends also on the relationship that they have to the person with dementia.

[00:05:30] Maria: 5:59

So, the needs of a spouse will often vary from the needs of a child who's looking after a parent. Obviously, the needs can overlap, and primarily it's around caring for the person with dementia. And it can vary from day-to-day care, so assistance with their personal care, bathing, dressing, feeding. And then it can vary from just having the need for supervision.

[00:05:57] Maria: 6:25

So, they can't leave the person alone because they're [00:06:00] at risk of wandering or getting lost. So, it just varies. One of the biggest challenges for patients who have early onset dementia is financial. It's a huge burden. Oftentimes they're unable to work. Oftentimes they may have children who are quite young, and it's a loss of income.

[00:06:22] Maria: 6:50

And on top of that, there are costs associated with caregiving. And so, one of the most challenging pieces and one of the concerns that is the most challenging is really around finances because there's a loss of income on one end, but then there's also costs to caregiving. So, it just seems like it's a double whammy for some of the families.

[00:06:45] Maria: 7:16

As social workers, we have a lot of conversations regarding supporting each other and our team, and this job sometimes is not very easy. Because we see our patients over a long period of time, and we get to know some of our patients and families very, very well. And we see over time that they aren't doing very well.

[00:07:08] Maria: 7:40

And they're requiring more and more support. And I find what's helpful to me as a social worker is really to have a very connected team, a team that works very, very well together and we can support each other during these difficult times when we see that we don't have a cure to offer them. But one of the things that we do try to encourage amongst our team and for our patients and caregivers is to provide them with, with hope because I feel that hope is what really keeps us motivated to continue doing the work that we're doing as healthcare providers.

[00:07:46] Maria: 8:23

But also, for families to continue to care for the person with dementia over long periods of time. What gives me hope as a social worker working with families is to think that there is some difference that I'm [00:08:00] making in this journey in supporting them at home and trying to make dealing with the diagnosis of dementia a little bit easier.

[00:08:09] Maria: 8:49

So, my hope as a social worker when I'm working with my patients and families is really to try to make an impact. on this journey that we unfortunately can't change for them but trying to make it easier. I'm always trying to learn both personally and professionally, and it's incredible even after working in social work for almost 25 years, when I work with my patients and families, I always learn something new.

[00:08:36] Maria: 9:20

They are incredibly resilient. They're incredibly resourceful, they're incredibly loving and it really is a privilege to be involved in their lives and to allow me to be involved in their lives and to allow me to have some element of providing care to them in a way, hopefully, that is supportive for them.

[00:08:59] Maria: 9:42

I do keep in touch with families, especially families that I've worked with over many, many years. I find that one of the things that is the most challenging for me as a social worker is after working with these patients and families for many years, once the patient passes away, they are no longer a patient in our clinic, and we lose contact with the families that we've been so engaged with over the years.

[00:09:26] Maria: 10:13

One of the facets that is so important that we really don't discuss is what happens when the role of the caregiver ends. So, if it's someone who's been working as a caregiver for many, many years and have sacrificed many aspects of their life in this role, when the caregiving ends, oftentimes they can be lost.

[00:09:47] Maria: 10:37

They have to find a new meaning in life. And we don't really get to see that piece of it once the patient passes away. We don't know what happens with these families. But I am very privileged to say that[00:10:00] sometimes many families will continue to keep in touch with me and let me know how they are doing, and they want to let the physicians know how they are doing.

[00:10:08] Maria: 11:07

And it is a source of pride that they are continuing with their life even after the passing of someone that they loved so dearly. So, it is very touching that they're still interested in me as a social worker and still wanting to feel connected to people who I believe they felt were very supportive and helpful during their journey.

[00:10:32] Maria: 11:32

The most rewarding thing I find in my job is really getting to meet such wonderful people. Not only health care providers, and the people who I work with directly-- I adore my colleagues, they are fantastic and wonderful clinicians, but I get to meet so many different people from all over Ontario, from different walks of life, different cultural backgrounds, religious backgrounds, and it allows me to be open to them and to learn directly from them about what's important.

[00:11:09] Maria: 12:05

And to learn different ways of managing the same illness. People do it in very, very different ways. And so, I learn a lot from them, and I find that to be extremely rewarding. It's continued personal and professional development through the families and patients I work with. As a social worker, you're in the field to help people.

[00:11:29] Maria: 12:30

And sometimes you don't feel that you really do very much for families. That's how I feel as a social worker many times. I can't provide them with a cure. I don't have a magic wand to make all of their challenges and difficulties disappear. And so, when families call to say thank you for whatever small little thing that I did for them, but it's made a whole huge impact on their quality of life,

I find that very [00:12: 13:01

00] rewarding.

[00:12:00] Maria: 13:03

I'm very hopeful and optimistic for all the research that's happening at Krembil. There are many clinical trials that we are able to offer our patients, which I think provides an element of hope. So, we're all keeping our fingers crossed that these things will be beneficial and will actually be impactful on the disease process.

[00:12:22] Maria: 13:26

There are other recommendations that we always make for modifiable risk factors. And so, we hope that if people engage in very healthy lifestyles, that it will make an impact on their brain health. In my role as a social worker and as a health care provider over the course of 25 years, I have learned both from the physicians that I work with, as well as other areas that I've worked with in the hospital, that it is very important to lead a very healthy lifestyle so that we can take care of not only of our bodies, but also of our brains.

[00:12:57] Maria: 14:09

We encourage them to continue to look at the risk factors and try to modify them to lead to healthier lifestyles and for healthier brains. And I think we can all engage in reducing our risk factors for dementia. It's something that's very important, and we need to keep our brains healthy.