Guest: Maggie Concannon
Topic: Alzheimer's Association, WNY chapter
Published: May 23, 2021
Host: Welcome to Independent Perspective In-Depth, a program presented in the public interest by the Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we'll be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds.
We are delighted to have as our guest for today, Maggie Concannon, a Care Consultant with the Alzheimer's Association, Western New York chapter. We are your hosts Jillian Moss Smith and Ernest Churchwell. Welcome to the program, Maggie.
Guest: Thank you so much. I'm so honored to be here with both of you today, talking about a very worthy topic so thank you both so much for having me.
Host: It's our pleasure. The obvious question that comes to mind, the title Care Consultant, sounds like you could have a broad area of responsibility within the association. Could you describe your job to our listeners?
Guest: Absolutely, and you're right about that, Ernie, we have a very broad area of responsibilities for sure. Basically, my main role with the association is to work with families on connecting them with resources in the Western New York community, so I work on our helpline, that specifically connects Western New Yorkers who are affected by Alzheimer's or dementia. So, I will arrange community resources and connect caregivers and care partners to different resources in the Western New York community that may help with education, caretaking. Maybe there's a grant out there that might be able to help assist a family pay for care for their loved one. A big part of the title Care Consultant is also educator so I spend a lot of time educating families and people who are directly affected by Alzheimer's, just teaching them about different warning signs different topics, care planning, sort of a jack of all trades. So, definitely, it's a sort of position that you need to have compassion for but also be able to provide different resources, and definitely connect people to whatever they may need at that time.
Host: Awesome, thank you. And unlike our agency's long term five minute public affairs show, in this program we have the luxury of time to get to know our guests, so what are some of your prior positions that helped prepare you for this job?
Guest: So, I have a pretty good background in behavioral health, I've worked with patients who have had different behavioral health diagnoses like depression, chronic pain. People who have maybe experienced different forms of memory loss or traumatic brain injuries, people who have been diagnosed with anxiety or different mental health disorders. I also have had some background in a hospital setting doing case management on a neuro rehab floor so I've worked with patients and families who have maybe dealt with traumatic brain injuries, or different neurological issues that have affected them on a pretty high scale.
Host: Alright. About 18 years ago I became the primary caregiver of a parent with Alzheimer's, who sadly passed away in 2009, and at the time I went to a meeting of the association at a West Seneca storefront office so you've been around at least that long. When was the association founded and what else can you tell us about the local chapter of the Alzheimer's Association?
Guest: Well first of all, I'm sorry for your loss. It is never easy being a caregiver, or having a loved one who has been, who has dealt with this disease, but the Alzheimer's Association was founded in 1980. So, we've been around for quite a while. Actually, the founder’s wife was diagnosed with Alzheimer's. So, a group of caregivers actually got together and started the association then. Regarding the local chapter, we are actually in Amherst/Williamsville area on Sheridan Drive so due to COVID our office has been closed, but we've been fully functioning and helping families, all working from home, pretty much remotely either by phone or by zoom or web function so we are fully functioning helping families during this crazy time but we as a local chapter are pretty extensive in the amount of people that we help every year and the area that we cover so been a lot, lot going on, even with COVID and everything going on.
Host: That's awesome to hear. And like you said your current office is in Amherst, but your coverage actually extends to several other counties beyond Erie. What does your service area include?
Guest: Oh yeah, absolutely. We definitely have, we're located in Erie County, but we currently serve the eight counties of Western New York. So those counties include Erie County, Niagara County, Allegheny, Cattaraugus, Chautauqua, Genesee, Orleans, and Wyoming, and of course Niagara County, which I might have mentioned. But yeah, we are currently covering all those counties, it's definitely a boots to the ground sort of job but we do our best to try to help as many people in either a city setting, rural setting, whomever we can reach. That's absolutely our goal.
Host: During my involvement as a caregiver I was given to understand that the formal diagnostic almost always given was dementia, but I gather that has changed. I'm sure many people are wondering, how is Alzheimer's different from dementia?
Guest: Yeah, that is a great question. So, we actually get this question a lot from people who maybe have been given a diagnosis of specifically dementia. So how Alzheimer's disease is different from dementia. We sort of use the term dementia as an umbrella term to describe the symptoms caused by dementia, so Alzheimer's is actually a form of dementia and it is the most common form of dementia. A lot of times people might think that they're the same or different or interchangeable but they're definitely different. Alzheimer's is definitely the most common form of dementia. And you probably hear that more specifically than any other form. But there's actually many, many forms of dementia and Alzheimer's being the most common. Other common forms that are kind of covered by the term, the umbrella term would be vascular dementia is also very common, frontal temporal dementia. Dementia with Lewy bodies, and then you can also have mixed dementia, which are maybe more than one type of dementia, you could actually have both. So, it's a lot of times, definitely, maybe misinterpreted or not specifically diagnosed but that is pretty much how we like to explain the difference.
Host: Great. And so, although it might not be officially described as such we understand that the widely mentioned 10 warning signs can lead fairly confidently to an assumption of Alzheimer's disease. Could you please describe them for us?
Guest: Absolutely. So, we oftentimes will talk about this with families who maybe think they have a loved one who might be starting to show symptoms of dementia. So, the 10 signs, the first starting with memory loss that might affect your daily life. So, if you're experiencing memory loss that is maybe affecting your daily functioning, and it's making such an impact that is disrupting your ability to kind of get through the day, seamlessly. So, an example of that could be maybe having a doctor's appointment, and you completely forget about it until a few hours later. The second sign of Alzheimer’s could be having issues or challenges planning or problem solving, so that an example of that could be making an error while managing your finances, or maybe losing track of paying a bill on time. The third sign could be having difficulty completing tasks, so this could be a daily task that you have completed every day for the entirety of your adult life. An example of that could be maybe brushing your teeth. It's a familiar task that you do every single day but maybe having trouble doing the steps to brushing your teeth. The fourth could be confusion with time and place, so this is something that we see a lot of people experiencing, and it could be, you know alarming so something like maybe thinking that it's Monday instead of Friday, or not really realizing that it's five o'clock in the evening thinking it's, you know 11 o'clock in the morning that confusion and disorientation is something that some people experience as well. The fifth is having difficulty understanding visual images, and that disruption of spatial relationships. So, vision changes happen a lot, that visual awareness knowing how close you are maybe to the stairs or to a wall and accidentally walking into something that you thought was farther away. The sixth is having issues with, speaking, reading, writing, having trouble finding the word that you're looking for like you want to say something and you want to find the word but you just can't find it, that's really common as well. Misplacing and losing things and having difficulty retracing steps so maybe putting your keys down before you leave the house. When it comes to the point where you're not able to retrace your steps to find what you set down or where you set them down, that's an early sign as well. Decreased or poor judgment so this could be something as simple as, you know, maybe not changing the oil in your car, or having maybe poor judgment on just a basic decision that you might normally have no issues making. It could be something, an example of maybe not showering or maybe not keeping yourself clean or grooming yourself how you used to. Another very common sign that we see is withdrawal from working, from social activities, from any, you know, form of communication that you'd normally feel comfortable doing so that withdrawal, and maybe taking a step back from those social situations that you used to be comfortable in. That's very common as well. And then, another very, very common sign that we see is changes in mood and personality. Maybe it was someone that used to be very outgoing, life of the party, you kind of see that mood or personality switch, again they kind of become more reserved and not as outgoing as they used to be or vice versa. So those are definitely the most common signs that we see. But, you know, some people may not even experience all 10 of them, they might experience, two or three. That might be a little bit more concerning than may be something else so definitely keeping an eye on your loved ones or even in yourself if you see yourself or someone else experiencing these definitely addressing it. The sooner rather than later is extremely important with this disease.
Host: Medical standard practices describe the brain as being divided into three areas each with a separate function, what are they and can Alzheimer's affect them all?
Guest: That's a great question. So, the brain is divided into the three main parts just like you had mentioned, the cerebrum, the cerebellum, and your brainstem. Alzheimer's disease, or really depending on what form of dementia you have really can affect all three parts of the brain. Maybe one part of the brain is affected at a more progressive or intense rate than the others, but over time, the brain as a whole is absolutely affected by the disease. Alzheimer's disease definitely affects that short-term memory. That's the biggest symptom that comes with Alzheimer's disease short term memory, forgetting things, remembering them maybe a few hours later, but that's the biggest symptom with Alzheimer's.
Host: So, when under assault in Alzheimer's, we understand the overall size of the brain actually shrinks. Some principal ways that the brain can suffer damage are through plaques and tangles. So, using layman layman's terms, could you explain them?
Guest: Absolutely. So, with Alzheimer's disease, scientists still unfortunately don't know what causes this to happen, but your brain has good proteins in it called beta amyloid. So, these proteins, what happens is a plaque is formed when these proteins begin to build up so the plaques will become built between the nerve cells. So, your brain has nerve cells and neurons kind of telling each other what to do, how to function. And these plaques cause a build up for tangles. Tangles are what are created when those nerve cells begin to die so this also disrupts the neurons kind of telling each other what to do and how to function, which just like you had mentioned, over time, all of these nerve cells are eventually dying, which makes your brain, essentially shrink and get smaller. So, with Alzheimer’s disease, your brain is literally dying, and essentially shrinking
Host: As many more areas of the brain are damaged more bodily functions are affected, often until the person cannot survive. Although each individual is different, how long does it usually take after initial indications for the disease to run its course?
Guest: That's a really great question. So, generally with Alzheimer's disease, we tend to see survival after diagnosis, being anywhere from four years to, could be eight to 10 years. However, some people continue to live for an additional 20 years. Again, it sort of depends on other factors like lifestyle. If you have any other comorbidities, any other major health issues, but it really does vary from honestly four years to, could be 20.
Host: If you've just joined our program, you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guest is Maggie Concannon, Care Consultant with the Alzheimer's Association Western New York chapter. We’ll continue exploring the exciting work of this organization,
Up to this point we've been focusing on rather bleak issues, the symptoms and consequences of Alzheimer's but there is a reason the association exists, to bring hope. What are some of the programs and services you offer to people living with Alzheimer's?
Guest: Wonderful question I'm glad that you brought up this topic. Although Alzheimer's disease and other forms of dementia is so hard, and a lot of times we associate it as really sad things to talk about, the Alzheimer's Association absolutely brings so much hope to the community and to families living with this disease. As the Alzheimer's Association of Western New York chapter, we offer sort of an abundance of programs and resources and services to the community. During the past year, obviously we have had to switch pretty much all of our programming to virtual programs or either using Zoom or phones, but we have absolutely sort of switched gears and offered all of our programs virtually so we have education programs covering topics like, understanding the basics of Alzheimer's and dementia, learning about different behaviors, different symptoms. We have specific programs focused on helping veterans in the community. We do our best to try to offer as much education and variety of education as possible. We also have a pretty big amount of support groups as well so we have support groups for just general groups. We have support groups, just specifically for men, for wives, husbands, adult children maybe you're a long distance caregiver, we have a support group for that. And then we also have an early stage program that is mainly focused on offering social programming for people who are living with the disease in the early stages and their care partners and families as well. So again, COVID kind of threw us for a loop there but we continue to offer as much support as possible. We also offer a 24/7 helpline. So, one of my main roles as a Care Consultant here is to help families and people who maybe call in with questions about, my loved one is, really struggling with this symptom, what's the best way to help them. Maybe they have a question about, I'm having trouble finding someone come into the home, do you have any resources that might be able to help me find someone who would be a good fit. We have different partnerships in the community, like with ECMC, they offer a driver evaluation program for people who have a diagnosis, or some sort of memory loss. We help fund that. And then different grant programs that might help aid respite in the community or if someone needs help in the home, we can kind of assist with that. So again, we have a lot of programs, a lot of supports and services. And we do our best to kind of try to extend that reach like we talked about earlier to as many people in as many counties as possible.
Host: Awesome, so you kind of just answered my next question which was focusing more on families and how you can help those families in need. Is there anything that maybe you didn't mention, I know you mentioned support groups already, you mentioned the hotline or helpline. Is there anything else that you can do for the families that are going through this that you did not mention before?
Guest: Absolutely. So, one more thing that I hadn't mentioned was we also can do something called a care consultation. So, we offer this to families who maybe need us to sort of facilitate a family meeting for them. Care consultations can be over Zoom with as many people who are involved in their loved ones care as possible. We can do it over Zoom, over the phone. Once we have safety procedures in place, back to doing those in person with families, but definitely kind of uniting the family as a group as a whole and kind of helping them come together and plan for their loved one and come up with the best solution. We definitely do a lot of those family-oriented, family-based meetings as well.
Host: Wonderful. Over the last 100 years or so, lifespans on the average have been greatly increased by advances in medical science nutrition, workplace safety, and other improvements. I suspect that Alzheimer's has probably been a very frequent area of scientific inquiry. Where's the status of research regarding finding a cure or treatment for the disease?
Guest: Yeah, that is a really, really important impactful technical topics so research for the Alzheimer's Association is one of the biggest, I guess, parts of our association. So annually the Alzheimer's Association and Alzheimer's in general has funded $3.1 billion dollars of research for trying to find a cure, or a way to treat Alzheimer's and different forms of dementia. So, currently unfortunately there is no cure for Alzheimer's disease. But there are different treatments that help with some of the symptoms that someone with this disease may be experiencing. So, again, unfortunately, not a cure yet. But hopefully, hopefully soon. Researchers have been doing numerous, numerous trials with people who have volunteered to take part in them. So, a great way to become involved in research if you have Alzheimer's disease, or another form of dementia is to become a part of a trial. So, anyone who maybe is looking for a way to get involved or to help but don't know how, if you're living with the disease is to take part in something like a trial. So, we have information about trial match on our website and that's always something that really is a vital part of research. There currently is a drug that's in the final steps of FDA approval that hopefully will be approved by the FDA. That could make a really great impact in the treatment of Alzheimer's disease. So, where we're hoping for good news about that drug. Again, it's in the final acceptance phase of being approved by the FDA, so definitely always things moving forward in the research field. And hopefully, we're all very, very optimistic in someday finding a cure for this disease.
Host: Would you believe that we're almost totally out of time, I'm sure people will have questions. How can they learn more about the association, and or volunteer to work with you?
Guest: Absolutely so they can always visit our website. It's alz.org/wny and on there, there's an abundance of information on how to contact us, our helpline information, different research updates. And then, of course, like you mentioned, volunteering. Volunteering is an incredible way to become involved and make an impact in your community, even if you have no ties to the disease. We absolutely are so grateful for our volunteers, there's tons of different opportunities for you to become involved with us, tons of different titles or positions that you could look into, so take a look at our website, and you can always give us a call our phone numbers, all over the website so feel free to always call us.
Host: Great, thanks so much for being with us today, Maggie.
Guest: Thank you so much for having me. This was an incredible platform to talk about such a worthy cause, and I appreciate you both for inviting me on.
Host: Glad to have you. You’ve been listening to Independent Perspective In-Depth, the program presented in the public interest by the WNYIL family agencies, courtesy of the NFRRS. Our guest was Maggie Concannon, Care Consultant with the Alzheimer's Association Western New York chapter.
This program features a song, “A Little Ditty on the Dance Floor” by Jay Lang available under a Creative Commons Attribution noncommercial license.
We’ve been your hosts, Jillian Moss Smith and Ernest Churchwell. If you wish to hear this program again, a couple of days after the on air broadcast you can find a podcast on the NFRRS web page, nfradioreading.org on the Programming tab under Bonus Programs and also on www.wnyil.org under Public Relations/Podcasts. Have a good week, and be safe.