Alzheimer’s disease is a condition that afflicts a significant part of our aging population, yet we still have a lot of catching up to do in addressing the needs of people who are living with it. The Alzheimer Society of BC envisions an ideal society that is free of Alzheimer’s and dementia. In recognition of the fact that the vision may be many decades away from realization, the Society endeavours to funnel funds to research, healthcare, and general service – all geared towards eliminating the stigma against Alzheimer’s, making people living with the condition feel like they are part of the community. How has the Society been putting this mission into action in the many decades of its existence? How is it faring amidst the radical changes brought about by the COVID-19 pandemic? Joining Douglas Nelson on the podcast, the Society’s CEO, Maria Howard, tells us how deep relationships with the donors, caretakers, and people living with dementia are helping them excel in their service.
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Listen to the podcast here
Alzheimer Society Of BC With Maria Howard
Our guest is Maria Howard. She’s the Chief Executive Officer of the Alzheimer Society of BC, and we’re pleased to have her on the show. Welcome, Maria.
Thank you. It’s great to be here.
Maria, you have been leading your organization for several years. It’s hard for me to imagine that there’s anyone reading this that isn’t aware of the increasing occurrence of Alzheimer’s in our society. Maybe you could share with our readers a little bit about what your organization does here in British Columbia.
The Alzheimer Society of BC has been around since the ‘80s. It started off as a small grassroots organization led by some volunteers and people who were touched by dementia. They decided that they needed to put together a volunteer organization to try and support families and people living with the disease to have the best support since there was little support at that time in the healthcare system. Over the years that the Society has been around, it has grown from a very small organization to a provincial healthcare charity. The vision of the Alzheimer Society of BC is to ideally have a world without Alzheimer’s or dementia, but to build a society where people who live with dementia are acknowledged, included, and feel like they are a part of the community. That is the main focus of the Society in all that we do, our programs, our education, and our advocacy. It is focused on ensuring that people touched by the disease, whether you have a diagnosis, you are a carer, a family member or friend has the support and the education, the knowledge to make the decisions that you need to for your own unique situation.
One of the things that jumped out at me as I was learning more about your organization was your focus on change and your strategic plan. You talk about having five priorities, and all of them start with change. Changing the conversation, the experience, the practice, the policy in the future. How does that message of change resonate with your core constituents and with your donors?
People have a sense of confidence when we talk about that. The Alzheimer Society of BC is focused on change. Change is one of the necessary elements to be a charity in a healthcare system and even more so when you are supporting people with a disease that has not yet had a healthcare system set up essential disease protocols. Disease protocols are what are essential within the way healthcare is administered in our provinces and in our country to have the funding, the strategies, and the support through the health authorities, through the ministry to support that. Alzheimer’s and various types of dementia do not have those disease protocols yet. Change is important because as our organization is supporting people and advocating, we need to keep watching how the environment is changing. Hopefully, most of those changes are for the good, but sometimes they go in a different direction. We need to be nimble. We need to be innovative. We need to be flexible. The supports that we are providing for our families, for our donors, for our partners is constantly recognizing that we need to change to keep things moving in the direction that we ultimately want to go.
When you have those conversations, identifying the areas that need to change, whether it’s in policy or whether it’s in the system of care, how responsive are health leaders and politicians to the message that things need to be done differently, to better support people living with Alzheimer’s or dementia?
It’s a continual conversation. We have had a strong relationship with the government. We actively promote ourselves as very nonpartisan. It doesn’t matter if it’s Liberals, NDP, the Green Party, whomever it is. We all have an obligation to help change. We have found that the ministry of health and the political leaders understand, and they are willing to support. When we can show them how, as a charity, we can fill the gaps that the system has not yet been able to address, we can show them by certain strategies or services, things can improve and then advocate for those strategies to be adopted into the system.
Alzheimer Society Of BC: Change is one of the necessary elements of being a charity in the healthcare system.
We get a good partnership going where the ministry understands we are trying not to shake our finger or wrap them on the knuckles for not doing it, but saying, “We can help figure this out together. We can advocate and help you go through that.” If I run through the changes because they are a broadband. We have five changes. The first change is to change the conversation, which is what we’re doing. It’s talking about what it is to understand what dementia is. Alzheimer’s is just one type of dementia. It is to understand what it’s like to live with the disease and to understand how we can support people to make the best decisions in their life as they start down that journey. It’s having conversations through awareness campaigns, through multiple different venues.
The second change is to change people’s experience. That’s directed and ensuring that people who are living with the disease and their care is having the support and the services they need to continue to have the best quality of life, to make the choices they want, to make the decisions that they feel are important to them as they decide how they want to be involved in their community. Through our First Link program, dementia helpline, webinars, exercise programs and Minds in Motion, those are all ways to help change the experience. Changing the practice, which is the third one is helping professionals who are also supporting people living with dementia whether it’s a healthcare worker, a bus driver, or someone at the library and community center have the knowledge and the skills that they need to interact with people living with the disease to have the best experience from both of them.
We work very closely with SafeCare BC to provide webinars and training sessions to move toward what we call a dementia-friendly community. The fourth one is changing policy. That’s exactly where your question started was working with the ministry to understand the different policies that need to be in place to help people manage what is happening in their life. That’s not just health. One of the things that we understand when we think about a disease is that it is a healthcare responsibility. While certainly healthcare holds a significant level of responsibility for dementia or someone with a disease, it touches many things. Whether that’s transportation, education or to do with municipal governments. We often hear people say, “It’s not the healthcare that’s my challenge. It’s how do I take a bus? How do I go to the store? How do I go to the bank?”
The fifth one, which is the one that runs closely alongside all these changes is changing the future, which is research. We hope that one day research will find why do people get dementia? What could be a better treatment? How can we slow this down or perhaps stop it? We need to ensure that while researchers are working on all those important scientific and medical types of research programs is that they have the voice of people living with dementia to guide them. What we don’t want to have happened is to have researchers discover something or find something out and then they turn to the community where people live with dementia and people say, “That doesn’t help me in any way.” We want to make sure that those two groups are very much working closely together from the beginning so that people with dementia are guiding the priorities that research is looking at. When research does make some great discoveries, they can ensure that what they are discovering gets to people as soon as possible.
One of the real challenges of any health organization and certainly a health social profit organization is balancing the investment in research, which is very much future forward-looking with the supports for the individuals who are managing or living with the disease. How do you and your board seek to strike that balance between support for those dealing with Alzheimer’s and dementia, and those investments in research that may change the outcomes for people down the road?
It is a tricky balance because it’s like a chicken and the egg scenario. Where do you start? What service or research? Both are very important. It is important to build awareness and understanding about dementia and challenge the myths and the stigma. One of the things we do know, certainly in dementia research is that a lot of people with dementia don’t volunteer to participate in research. One of the important stages in a research process is the ability then to take whether it’s a medicine, treatment, or some type of process and bring it to a test community to see whether it works or not. If you don’t have people volunteering who are living with the disease to participate, you can’t move your research forward.
If you have a stigma in the community that people fear that they don’t want it to disclose they have dementia, people aren’t going to volunteer. It is important to run those together because they do have to work together to get to the end goal. The second element is that, unfortunately, if we look across the wide spectrum of health and other disease states, we know that even with some significant changes in research in the past years in terms of diseases such as cancer, HIV, diabetes, and MS. People still do live with the disease. While we are optimistic and hopeful that we can find something, and then the next 10, 15 years, that’s going to change the face.
One of the big challenges that any health organization face when you invest in research, as well as providing supports to people who are living with the disease and those that are caring for them is how to balance your investments. How does your board or you at the Alzheimer Society of BC strike that balance between research and supporting those who are living with Alzheimer’s and dementia?
The Alzheimer Society of BC envisions a society that makes people who live with dementia feel like they are a part of the community. Click To TweetThat’s an important conversation and an important focus because what we do know is that it becomes almost a chicken and an egg situation where you need to have a focus, intention, priority and research. At the same time you do with service, but both are necessary in order to move things forward. One of the things about research is that as they go through the various stages, they will ultimately get to a point where they need to have volunteers come forward and participate in whatever the trial might be, whether it’s a drug, some type of treatment program, or even some type of quality of life program. In order to do that, you have to have people who are living with dementia who are open to volunteering. Unfortunately, we still have a disease where people still have a lot of myths and stigma around the disease, even those who are diagnosed with it.
We often don’t have people coming forward and disclosing that they have the disease, because they are worried about what might happen. When they don’t come forward and they don’t participate in the research and trials, then we can’t move the trials forward. That’s why on the surface side, it’s important to keep advocating the community about what it is like to live with dementia and give people the tools through education and support so that they begin to understand what they’re living with. They begin to build confidence and still having a quality of life while they are living with the disease. The other element that is quite critical between research, support, and service is that when we look at the broader health spectrum, unfortunately, there are a number of diseases that have had tremendous research support over the years like MS, HIV, cancer, and diabetes.
We know people still have those diseases and are becoming diagnosed with those diseases, which means that even though when research can find something spectacular or significant, people will still be living with the disease. I expect that while I’m hoping for something big to happen in the dementia world and the next 10 to 15 years, we will still have people who are being diagnosed. We need to ensure that those families who are still struggling with the disease have the right tools in place and the support so that they can continue to have a quality of life they want.
You’ve done an excellent job of summarizing that it’s not an either-or, but both research and support for those living with the disease are critically important. Do you find that there are times in conversations with donors or people who maybe aren’t as familiar with the condition that are wanting you to invest more in the research side to say, “Let’s solve this once and for all,” rather than worrying about those that have already been diagnosed?
That’s human nature in many ways. People are all different. Some people who have seen how tremendously difficult it can be to live with dementia want to find a solution. They want to invest fully in research. We have others who might take a different approach and say for them, it’s quality of life. That is the best, and they don’t want to make assumptions on how people are adapting to living with dementia. They want to ensure that the services are there and not just services and support for people living with the disease, but people who are caregiving the partners of families, close friends. It is a conversation that the responsibility for our society is to ensure that people who are wanting to be generous and donate understand the full spectrum. They understand where their gift will go, how it will make a difference.
Ultimately, we are very appreciative of where their gift wants to go. If they choose for that to go to research, it’s our responsibility to then make sure that that gets to where it needs to go. In an indirect way, it can still touch on the service side because a lot of research looks at the quality of life. A good example of that is all the research that’s being done into music therapy for people with dementia. People might want their research dollars to go into music therapy, but ultimately the society may be supporting organizations who are providing music therapy. It still has a very much connected interaction between the two areas. I see it as our responsibility to ensure that people who are being generous to give understand all the different options and how their gifts can make a difference in many different ways.
The balance of leadership is making sure that every one that is wanting to give in a particular area, one can do that but also does that with that full knowledge of the spectrum of support that your organization offers.
It’s that because one of the things that have been amazing for me to watch is that the Alzheimer Society of BC, we have two advisory groups. One is with people living with the disease with dementia. The other group is for people who are a caregiver. Those two groups help us make a lot of decisions in terms of where our focus should be, what we should do, where we should invest our time, and what makes a difference. I can think of some connections with various groups and individuals in the past as donors who have only wanted their dollar to go into research. There have been some very valid connections through the arts and impacts. They have been very clear that that research is the way to go through a wonderful opportunity of bringing those people, the donors who have been supporting research. Connecting them with some of the people on our advisory groups. Introducing them and letting them have a chance to get to know each other and understand what each one sees on the whole picture and landscape of dementia.
Alzheimer Society Of BC: We need to see the person first. The disease is just another element of their life.
We’ve seen some amazing shifts from donors who’ve said, “I didn’t appreciate that,” or “I didn’t understand how that made a difference,” or “I am amazed that this individual who lives with dementia has such a big pride about the advocacy they’re doing in the quality of life.” I want to be a part of that. For us as a society, a part of our responsibility is continuing to connect everybody to understand and see how they can all work together as a community to make this a difference. It’s amazing when you see people start to shift and understand we’re just not talking about a medical healthcare issue here. We’re talking about people who are doing the best they can to continue to have an enjoyable life just like all of us.
As you talk about that, I can hear in your approach and the words that you’re using that you are that leader for that changing of the conversation. Having people who are maybe new to Alzheimer’s and dementia as a cause understand the impact they can have as a donor and how they can contribute as a patient or as a caregiver to those people. You are playing the conductor of the symphony role and bringing the full conversation together.
It’s important for us too. When we talk about how we can change the landscape is to be, as you suggested a conductor or like a conduit. We can never make an assumption on how one individual wants to live their life or what decisions they would make around some significant things that may have to them on their dementia journey. What we can do is make sure that everybody has access to all the right information, education, and support so that when they’re making their own decisions and hopefully making those decisions as early as possible, they can feel they have everything they need to make a decision that’s unique to them. That may mean that when they make a decision at the beginning of the journey, they may say, “My choice here is A,” but after maybe five years, they may have a different approach to how they see the progression of their disease.
That’s normal for anybody. It is what we call a person-centered approach, where you see the person first. We all want to be seen, and the disease is just another element of their life. As a healthcare charity, it is our responsibility to make sure those opportunities are always in place in the community and the right people are sitting at the table the right time to have the right conversation. That is a role that charities play a very significant responsibility, whether it’s a healthcare charity or any other type of environmental or sector charity.
As a leader of your organization, how do you encourage, inspire, instruct your team to stay focused on the mission that your organization exists to serve?
It’s an honor to lead an organization. Charity work is rewarding. People come to charities usually from a very strong mission-based. They want to reach out and help people and make a difference. It’s often the motivation of people or they encourage them of people isn’t the biggest issue. It is trying to protect them from burning out and looking after themselves. What I love is that by having a mission-based organization that fosters a person-centered approach. In the work we do and the way we approach our work, we’re always putting the person who’s living with dementia at the very center of everything we do. Our staff, whether they’re in fundraising, in services or advocacy, even on the administrative side are always connecting with people, families, understanding and getting to know their personal situations.
That in itself is such a motivator when people understand what people are doing. It’s encouraging to see how people reach out. We’re a provincial organization and we have over fifteen offices in the province. BC is a big province. Whether that’s an office in our Vancouver, Surrey, Prince George, Nanaimo, or in the Kootenays. There are different communities. We want to ensure our staff have the support and also the flexibility to make sure the support they’re providing in that community is right for that environment. Even language, we work very closely with the Chinese, multicultural groups, as well as South Asian, recognizing that everybody comes to the disease with their own unique situations. We want to make sure they have the right information in the way they need it.
Person-centered and community-centered. It seems like an important element to be able to effectively represent the cause that you’re championing throughout the province. We’ve talked a lot about change. All organizations in the social profit sector have undergone a lot of change since the COVID-19 pandemic began. What has been the biggest impact on your organization as you’ve had to make a pivot to deal with the pandemic?
It is important to build awareness and understanding about dementia and challenge the myths and the stigma. Click To TweetIt has been interesting, and I’m sure as many organizations have to reflect back about,” what we’ve done and how we’ve done it. The thing that has worked well for the organization, which in the way we provided our support. This is nicely to be reflected back to us through our check-ins with our families and various partners is that we were aware that things had to stop. It was like our in-person services because of the restrictions and the limitations that were set by the province. We had to do that. Of course, we were supporting people who are very much in the vulnerable category, so we don’t want to put them at risk.
We also knew that people still needed support and could not be left alone, but may not have the capacity or the energy to proactively reach out. We made an effort to continue to proactively reach out to our various families and our clients, even many of our partners and volunteers to keep in touch with them. How we balanced it, which worked well is that we didn’t rush into changing everything that we were doing instantly on to virtual or online. We went back to the old-fashioned telephone and just put it as a priority. Calling people and saying, “We’re still here. We hope you’re okay. You can call us any time. We’re going to watch and see what’s happening.” As we know what’s going to happen within our province, we’ll start to make sure the supports are in place.
We want to know that you’re okay and that we’re here and we will keep calling you. We will keep checking in on you. As things stabilized a bit, we’ve begun to start to set up virtual support groups, webinars, and starting to roll our services out in a more virtual way. That combination of proactively reaching out to people and letting them know that we were going to keep in touch with them and they didn’t have to worry about being alone. Also, not overwhelming them with, “You have to click into this, do this, and do that,” gave people a sense of confidence that they weren’t alone, but they didn’t have to add new anxiety into, “Am I going to be able to access that? How am I going to do that?” That strategy has worked well.
One of the things that we’ve heard a lot in conversations, other interviews, and conversations with leaders across the country has been that boards and board members have been wanting to step forward and contribute. How have you used your board, or how has your board been involved in your organizational pivot through this pandemic?
We’re fortunate to have a very engaged board and people who live in the communities across the province. As a provincial organization, we have a provincial board. The timing of this was also interesting because every year in the spring we run our big investor’s group, IG Wealth Management Walk for Alzheimer’s. That has always been an event that we hold in 23 communities. It’s a big event. It’s our most significant fundraiser. We typically bring in about $1 million. It is a big-time, but because of the pandemic, we became aware that obviously, we couldn’t have the walk. We changed quickly into setting up a virtual walk. From a wonderful opportunity, we were able to set up a natural virtual walk across the country.
Our board was very supportive of that. It was a quick change. There were a lot of big decisions that had happened quickly. They were leaders in terms of their own donations and they’re champion. They’re making sure that the word was spread, and it made a big difference. We had a wonderful walk. We didn’t bring in $1 million, but we brought in a good, significant amount, which was rewarding to see that many of the people who are committed to supporting us through fundraising and giving were still very much there. We were appreciative of that. We could count on the board to step up and roll up their sleeves and jump in.
When you’ve got the board stepping forward to help with fundraising, that is most every organization’s dream activity. Congratulations on being able to do that. You’ve gone through this, I’ve asked a lot of people what they’ve done to look after themselves. What I’m interested in learning how you’ve described this journey for your organization and the role of your organization, or generally in the province. Where do you turn for new ideas or inspiration as CEO of the Alzheimer Society of BC?
I tend to be the type of person who is always fascinated by change and always looking for what is the silver lining that comes out of it. My team will tell you that sometimes that even gets a little frustrating because I’m always saying, “What about this? What about that? Could we do this?” I come from a rehabilitation counseling background. It’s probably part of my profession to be always looking where you can keep taking a step forward. What I’ve found in COVID, it’s been difficult. I feel bad for many people who’ve been sick and those who have passed away and impacted families. It has though also offered a lot of insight into charity work and supporting people.
Alzheimer Society Of BC: At the end of the day, people still need people. We need to support people who are vulnerable.
One of the things that have impressed me the most when I look around businesses and communities, many of the organizations that I see that are still struggling, but seem to be still clear about their purpose are charities. Charities by nature are 100% mission-driven. They are used to always running slightly under budget, understaffed. It’s an environment they’ve been set up for many years. I’ve been impressed to see many charities step forward and make a difference. A lot of my energy comes from my peers and the charity communities, and that’s not just healthcare. There are many other valid charities out there. I am a Director with Imagine Canada, which is the charitable accreditation body in Canada. Through that, I have a great ability to connect with some real strong healthcare leaders. The help to me that comes is talking to people who work in the charity nonprofit world. While they may be struggling with some big issues, still are always fundamentally clear about what they need to do. That gives me a lot of positive affirmation, but it also generates a lot of great ideas.
In that spirit, Maria, what is one thing you’re looking forward to as you’ve seen how the sector has pivoted? There are amazing stories across the social profit sector for how our organizations or organizations in our sector have served their community. What’s something that you’re looking forward to as we move through summer into fall?
One of the things that have struck me in this whole pandemic is in a world that is becoming more global, more technological, and all those big changes, at the end of the day, people still need people. Humans are wired to have human social interaction. To me, that is still such a significant reminder that when we need to support people who are vulnerable, any of us can become vulnerable at any time. To know that fundamentally people still believe that social interaction is what is needed. When I start to think about what’s going to come in the fall and how our organization is going to begin to look at our new strategic priorities for 2021, I know other organizations are how we can continue to make sure the supports are there for people. Make sure that even with all the virtual and the different ways to support people, that we never forget the necessity of having that human social interaction somehow, so that people can still have that touch, which is what we all create.
We can leave our discussion there because it will end on such a warm and human note. Thank you very much for being here and being a guest.
It has been a pleasure. Thank you for the great questions.
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About Maria Howard
Maria Howard is CEO of Alzheimer Society of BC. She is an experienced leader with a demonstrated history of working in the charity/non-profit industry. Skilled in Nonprofit Organizations, Visionary Leadership, Strategic Planning, Coaching, Conflict Resolution, Team Building, and Public Speaking. She is a strong business development professional with a MBA focused in Leadership from University of Athabasca.
