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my advocacy for alzheimer's disease: from caring for one to caring for all
9 minute read
ron beleno has lived experience with alzheimer's because of his dad, and that's the "why" behind his advocacy work.
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when ron beleno’s father was diagnosed with alzheimer’s in 2007, he instantly jumped into the role of caregiver. following his father’s peaceful passing at home in 2018, ron’s purpose as it relates to alzheimer’s disease shifted from caring for one to caring for all.
now, ron is an experienced and well-revered advocate in the alzheimer’s community, working towards a better tomorrow for those living with the disease.
“how does someone become an advocate? well, you kind of grow into it,” ron said of his experience shifting gears.
taking care of someone living with alzheimer’s can be challenging, but just like anything else, there’s always good with the bad. that’s why ron chose to get into advocacy. to remind people that, while things can be difficult, acknowledging and learning about how things can go right is the only way to make caring for loved ones who have dementia-related diseases that much easier.
“for me, knowing the why, which was the pain and challenges that we had to go through in our family with alzheimer’s for my dad as well as for my mom, who was his care partner, is a big reason why i’m doing this advocacy work,” ron said. “but also to celebrate and acknowledge our successes that many families, i believe, are not seeing or not being given the opportunity to realize that there are some gifts and opportunities when i was caring for my father with alzheimer’s. so, that advocacy piece is to make people aware of the learnings, of the challenges, and all of that that my family went through but also knowing that it can be much better. there are many ways that it can be much better, so that’s why i advocate.”
using creativity to care and advocate for alzheimer’s disease
during his time as his father’s caregiver, ron had to learn on the fly. in his experience, the solutions he needed to ensure his father’s quality of life was as high as possible were unavailable or completely non-existent.
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“they weren’t giving me enough of the solutions i wanted,” ron said. “so, i was kind of known as that guy that would go and make his own solutions, if need be, around care, and that eventually grew.”
one such issue that many people face when caring for someone with alzheimer’s and other dementia-related diseases is wandering, which is a term used to describe the behaviour associated with alzheimer’s that leads to people with the disease leaving their homes, and in some cases, getting lost or disoriented in the process.
ron’s father was someone who displayed this behaviour, and when he reached out to healthcare providers for help, their solutions were not up to par. instead of settling in defeat, ron thought of new solutions that could help his father if he wandered, and eventually, his solutions became a part of his advocacy.
he implemented technological advancements made in recent years to solve problems that people living with alzheimer’s and their caregivers face, such as gps and cameras and sensors. eventually, other caregivers would ask him for advice, and not long after, even healthcare providers were turning to ron for new ideas to share with their patients.
“after i started sharing that, eventually i said, ‘well, i’m going to tell people this is a better way to do it, and that’s where the advocating kind of shifts where you’re no longer just telling a story. you’re now saying this is a better way because people are telling me it’s a better way.”
advocating for alzheimer’s in different ways
ron started in advocacy the same way many others do—through his lived experience caring for someone with a disease. in his opinion, advocacy comes in many tiers, from the simple act of correcting someone when they use improper or offending language to giving presentations and helping progress government policy.
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because of his views on advocacy and how significant the space is, people who wouldn’t necessarily call themselves advocates may take part in it every single day by being a voice for patients with alzheimer’s or other disorders.
“i would be considered in this space a well-known, quite active advocate. but to me, advocacy can be at any level, and it could be just voicing your thoughts, opinions, and comments at one doctor’s meeting. just something like that. advocate for what you think is best for your loved one or for yourself if you’re the person with dementia,” said ron.
“that, to me, is an advocate to say, ‘hey, those words hurt to someone or really there’s a better way to communicate that. just trying to make things better is my definition of what an advocate is.”
some advocates turn their cause into careers, while others put in the hours but don’t look at it as a job at all. ron falls into the latter category. he sees his advocacy work as “just part of my life”, even though he spends many hours giving presentations, holding workshops, working with and working towards changes with regulatory bodies, and assisting in research.
and his work is never done. even on the days when he’s not actively doing a pre-booked presentation or working on advocacy efforts, he still maintains the mindset of someone who gives a voice to those who may not be able to speak for themselves.
“i don’t look at it as a job per se, where it’s like okay, nine to five, i’m going to now be an advocate during this time. it might just be happening in a restaurant. i hear it all the time sometimes; someone’s talking about their challenges caring for loved ones,” ron said.
“i’m the type that’s not shy to just say, ‘oh, i was a caregiver too’ and just lead with that and then conversation starts, and then i say, ‘oh, but there’s some places you could go, some tips.’ to me, that is educating all the time.”
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addressing barriers in advocacy
advocates in the healthcare space face many barriers when it comes to getting their message out into the world. from a lack of support from healthcare professionals to a lack of cooperation in pushing through new ideas, solutions, and legislations, many hurdles faced by those in advocacy make the vital work they do that much more challenging.
many organizations and groups are also still falling short regarding the value that advocates bring to the table, from failing to offer payment for their time or using them as a token for the cause rather than valuing what they have to say. still, ron doesn’t see things in a similar vein when it comes to why he does what he does.
“to me, a true advocate is someone who’s really in it to contribute and help move things forward or change something. that is, i think, more the primary goal of advocates versus, let’s say, worrying about will i get paid,” he said.
“but added to that is, are they valued? that’s more important. do they feel that they’re being valued for their contribution? and that could be in many ways that say, ‘hey, we’re going to be able to get you to a conference for free.’ yes, it’s still money, but it’s not. some advocates are saying, ‘yeah, i’m not actually being hurt. they asked me to come.’ and it’s more tokenism, so be careful of that.”
tokenism, according to ron, is when organizations use advocates to get what they want or to fill a specific quota regarding education and awareness surrounding diseases without valuing that person for what they contribute. these tokenism behaviours stem from people being asked to participate in something without being really involved in the efforts.
“even those that come to present, some of them said, ‘yeah, i presented, and i said some of the important stuff but then for the rest of the conference, no one really valued me. i had nothing to do with the conference. i was just there to show that, hey, there is someone who’s a caregiver, and they’re not really acknowledged afterwards.’”
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ron believes that it’s not entirely on the organizations to change the tides regarding advocates and the value they bring to the table, but rather a lack of knowledge surrounding how valuable their work truly is.
“there are still many groups that are still trying to learn how to work with advocates and value their impact,” he said. he also wanted to make it clear that being paid for advocacy work, while welcomed, shouldn’t be someone’s primary goal of getting into the business of changing things for the better.
“there comes a line where, if you start looking at it as a job and you’re going around trying to get gigs to get paid, yeah, you could say an advocate, but i don’t know if that’s in the truest sense. i think you’ve shifted now to that job,” he said later continuing. “i’m not judging or saying it’s a bad thing if someone goes out (to get paid). i’m just saying that that’s kind of getting to that edge. then you’re forgetting about the advocacy piece.”
taking the bad with the good
living and working as an advocate is a noble pursuit because fighting for change where change is due is necessary for societal progression. like any other thing in life, though, everything has pros and cons.
ron acknowledges that the advocacy space isn’t perfect, especially for those just getting their feet into the pool. “if you’re a new advocate earlier on, they don’t listen to you,” he said.
while ron sees the challenges, he likes to focus on the good things about advocacy and his experience with his father, which helped him carve this new life path.
“i feel like i’m not wasting my lived experience of what i had to go through: all the ugliness, the failures, the bad days, plus the good days, the successes. a lot of people will look at some of these as bad days,” he said.
“some people say that period of my life, or what they’re going through now, it’s ‘my life sucks’ or ‘my life is over’. and i said, ‘fine, if you want to say it that way. or you can make lemonade out of lemons. you make something positive.’ the beauty of advocacy is you’ve taken something that may not be great, and you spun it around to make it better or positive in some way.”
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ron also likes to remember why he’s doing it: to make a fundamental change in the lives of those living with alzheimer’s and their caregivers. in some cases, the information or tips advocates provide may seem minuscule or unremarkable, but they can be life-changing to others.
“the other piece of advocacy that i appreciate is the impact that advocates don’t realize they’re making on other lives that are now going to be experiencing what you’ve gone through. either they’re experiencing now or in the future. just by saying something, maybe one little piece of information, one thing that i didn’t even realize is that important, could be a game changer in how they become a caregiver.”
calling on others to join the movement
as an advocate, ron sees firsthand how important the work he and other advocates are doing to help people living with alzheimer’s and other diseases. but he can also see that, while many people work in the advocacy space and have boots on the ground working towards better tomorrows, there’s always room for more people at the advocate table.
“i always urge people, do your best to push yourself a little bit to advocate however you can and whatever that means for you. we need more advocates. that’s how we’re really going to make a bigger impact,” he said, later continuing, “everyone could be an advocate as long as you care for your fellow human being. that’s the way i look at it.”
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