Transcript:

Ben Smith:

Welcome all to The Retirement Success in Maine Podcast. My name is Ben Smith and per huge. My co-host is here the cooks lobster and Alehouse to my Jordan snack bar Curtis Worcester. How you doing today Curtis?

Curtis Worcester:

All right. I like the theme. I'm doing well, Ben doing well. We're getting closer to warmer weather, so I might have to go to Jordans here soon.

Ben Smith:

Yes. And it's in Maine when you start seeing the temperature creeping up and it's 30s and 40s, and we're starting getting the 50s, you start dreaming the summer a little bit. So we got to break out a little lobster and clam rolls going on.

Curtis Worcester:

Exactly.

Ben Smith:

But we are really excited about our show today. And some of this from our client's perspective, right, is, again, we're listening to when people are sitting down with this, not only their goals and their aspirations of what they're looking forward to in retirement, but also of their fears. Is there's things that they're scared about. And this topic has come up a little bit, has been the concept of Alzheimer's.

Ben Smith:

So we wanted to dig in a little bit about that today. And currently more than 29,000 people in Maine are living with Alzheimer's disease. And we've had an episode on care giving. There's also 46,000 caregivers and they're providing 68 million, million hours in unpaid care.

Curtis Worcester:

Wow.

Ben Smith:

So they're doing it because they love that person and they want to take care of them. And so dementia caregivers are providing 20% more care today than they did in 2009. So this is a bigger call, a bigger challenge. And it also kills more people than breast cancer and prostate cancer combined.

Curtis Worcester:

Wow.

Ben Smith:

And if you look through, so Alzheimer's and dementia deaths have increased by 16% during the COVID 19 pandemic. And I know there's lots of challenges around getting care and caregiving and assisted living and nursing facilities. So that was the big challenge, which I think is where obviously seeing some ramifications of today and some of our longtime listeners of our show might remember we had awesome conversation way back in episode eight. When we say way back we're in our 60s now.

Curtis Worcester:

That's right.

Ben Smith:

Way back to eight with Dr. Cliff Singer of Northern Light Health Acadia Hospital, we had this conversation about breaking down normal cognitive decline versus what is more serious, but we wanted to talk about Alzheimer's specifically and then also what's happening with Alzheimer's in the state of Maine.

Ben Smith:

So that's kind of the premise of our show to date. And again, I think that's, it's just good to go, "Hey, things have changed since we first had our last conversation with Cliff Singer. And that was, I think the call for let's try to find our expert in the state of Maine can help us out with that.

Curtis Worcester:

For sure. And we reached out and our next guest were super excited about she serves as the program manager for the main chapter of the Alzheimer's Association. The Alzheimer's Association leads the way to end Alzheimer's in all other dementia by accelerating global research, driving risk education, and early detection and maximizing quality care and support.

Curtis Worcester:

Our guest holds a master's degree in organizational dynamics from the university of Pennsylvania in a bachelor of social work from Temple University. She has also held previous leadership roles with Philadelphia Corporation for Aging, Lehigh Valley Aging in Place Coalition Catholic Charities, United Way and Care Patrol. She is also a certified end of life doula, Reiki Master, and a certified yoga instructor. So with that background, I would love to welcome Amy Angelo to The Retirement Success in Maine Podcast. Amy, thank you so much for joining us today.

Amy Angelo:

Thank you for having me.

Ben Smith:

So Amy, well, we have lots to talk about around the Alzheimer's Association and what you're seeing and especially within nationally in the state of Maine, but also we always wanted to get to know you a little bit. Hear a little bit about your story. So love for you to just share with us to start a little bit about your childhood, where you grew up and your career path here. Because you have touched on lots of different areas in your career looks like.

Amy Angelo:

Yes I have. However, most of it has been in the older adult field. First off I was born and raised in a small town in Pennsylvania. I was an only child to parents who at the time had me, I guess, would be considered later in life. Maybe not so much so today. I was really close with my maternal grandmother and I would deliver home, deliver meals with my mom growing up.

Amy Angelo:

I loved doing that. And yeah. So then fast forward, gosh, I went to college, I studied social work. I did an internship at the Philadelphia Corporation for aging and that's one of Pennsylvania's area agency on agings. I think I found my passion really there working with older adults and providing services to them and their support systems. Then I went to work in a nursing and rehab center for a few years before going to work for the PACE program, which stands for Programs of All-Inclusive Care for the Elderly.

Amy Angelo:

And I was with two different PACE programs over 12 years doing marketing and business development. And really that's just an amazing program that helps to keep older adults living in the community. And then, gosh, what did I do next? I went to work for United Way in the Lehigh valley area of Pennsylvania first with our gatekeeper program, educating organizations and companies on how to recognize the needs of seniors. And then I became the director of Healthy Aging and Food Access for them. And then my last position before joining the Alzheimer's association was with one of the largest national senior care advisory companies as a business consultant.

Ben Smith:

Awesome. Well, and Amy, it sounds like as well as you said, there's a nice through thread that you have there relative to this aging population. So I will say from a gravitational poll, I could see why Maine had this poll for you, just because of, obviously we have one of the oldest states in the nation, we have a big need for, I think, help within the state of Maine around and aging.

Ben Smith:

And I think actually I think that's where we got introduced to each other was through the main council of aging. So our organization joined and got introduced to the Alzheimer's Association of main chapter that way. So pretty cool connections is getting joint passions together and finding ways to collaborate there.

Amy Angelo:

Yeah, it's been great.

Curtis Worcester:

Amy, I want to ask so what's been your personal experience with Alzheimer's and why are you so passionate about helping those afflicted by the disease or helping a loved one who has it?

Amy Angelo:

Sure. Okay. Well, gosh, going back to my childhood again, my first experience with Alzheimer's was when my grandmother was diagnosed with it. And I think I was in about sixth grade. She was around 80 years old. I got to see the progression of the disease and I saw how she became less and less able to do for herself. It was particularly noticeable because my grandma was fiercely independent.

Amy Angelo:

She eventually came to live with us, with me and my parents. And it really did become unsafe for her to live by herself. And yeah. I saw the toll that caregiving took on my mom and my parents and even affected me, it was traumatizing to see the decline and what everybody was going through. I got to see my grandma become more and more confused and paranoid.

Amy Angelo:

She would sneak out of the house and often we'd get called by our church parish because the police would pick her up. And the only person's name that she would remember was our priests. She didn't know to say our names or she didn't know where she lived, but she knew her priest. And so the priest would be called and then he would call us. And that happened a number of times, even though we were in the house with her and we thought we were taking all the precautions and apparently not.

Amy Angelo:

So it was really upsetting to witness this as a child. And then later as an adult, then it became obvious that my father was exhibiting signs of dementia. My mother was incomplete denial. And I now had like some experience around this some professional experience.

Amy Angelo:

So I worked with her, tried to work with her to get some services and make a plan. And then after my mom passed away, my father came to live with me. He moved in with me and I became the primary caregiver. He eventually joined the PACE program, which is where I had worked and that allowed me to still work full time and it allowed him to stay at home. As opposed to going into a nursing home.

Amy Angelo:

And he would still get the care and all the socialization that he needed. So that was great. But then as he was entering the late stage, the disease, he was diagnosed with bladder cancer and he passed away short four months afterwards. I have the firsthand experience both personally and professionally of how the disease affects people for both the person in the diagnosis with the caregivers, it could be very stressful, you could feel very isolated, like you're going through it alone.

Amy Angelo:

So I just wish that our family had known about all the resources that the Alzheimer's Association provided for free at the time, because we would've educated ourselves more on the disease. And we would've been able to lean on the experts and access a support group, the educational programs and just really get that support that we needed.

Ben Smith:

And Amy, I think that's really awesome. Thank you for sharing that because I know that's, it's really difficult to go through that. And I had a similar of my grandmother as well as seeing that decline and it was slow then all of a sudden, very rapid decline all at once. And it just from the family perspective and trying to figure out who's taking care of her and how we're all filling in.

Ben Smith:

And so, when we talked about the caregiver role is what we want to talk about today in addition to, "Hey, if that diagnosis is me, and here's, what does this mean for me personally?" As we go through that. And in addition to what you just said is, look, here's resources out there you are not alone. You have organizations here to support you. You just need to raise your hand and say, "Hey, I need help."

Ben Smith:

And that's what we wanted to go into a lot today. So I want to ask you just directly about the Alzheimer's Association. Can you talk about what you do personally in your role as a program manager, in addition to what services that the Alzheimer's Association, the main chapter provides?

Amy Angelo:

Sure. Yeah, the Alzheimer's Association, the main chapter is part of a network of more than 70 chapters nationwide. And our vision is really just a world without Alzheimer's. So our goal is to end the disease ultimately. We are the largest private funder of Alzheimer's research globally and we provide care and support to families here in Maine and all over the country facing Alzheimer's.

Amy Angelo:

We do this through our support groups, educational programming, our 24/7 helpline. We do annual conferences. In fact, we just had a free family caregiver conference where we had over a thousand attendees in the New England region. Which was amazing. Yeah, there's a conference for professionals coming up as well as a person centered dementia care training for direct care providers. Another large area of our work is advocacy to past legislation that would help families facing Alzheimer's and other dementias.

Amy Angelo:

And of course our fundraising, which makes the care and support and advocacy possible. We have the hallmark event, the walk to end Alzheimer's and we have another fundraiser event coming up in June. June happens to be Alzheimer's and Brain Awareness month. So that event is based around the summer solstice. And it's called the longest day. Maine specifically, gosh, there are so many ways that we reach our constituents and people can interact with us. We have people visit our website, mostly for access to information on our, up to date research and clinical trials.

Amy Angelo:

they could attend a fundraising event, perhaps one of the seven walks that are in the state of Maine. They could volunteer to become a support group facilitator. They could be a community educator. We have community representatives and we have advocacy ambassadors as well. But really we want people to know about our 24/7 helpline. It's the entry point to all of our programs and services, especially for folks who don't have reliable internet access or have access to the computer. And even if there's translation services need they are available. And the TRS operator services as well. And we serve everybody regardless of immigration or insurance status and it's always free. [crosstalk 00:14:44].

Ben Smith:

So Amy can you just walk me through that. So here I am maybe myself or I'm caregiving for somebody that either I suspect is Alzheimer's or maybe just get recently diagnosed with Alzheimer's or another dementia. So I call the hotline and I'm talking to somebody at the Maine Chapter, or maybe in the national piece, on the Alzheimer's Association. So what do I get in turn?

Ben Smith:

So why am I calling and what am I getting back? And what are they plugging me into? And what can I receive either maybe from the initial contact or maybe, "Hey, that's a year from now. And I have more questions or I'm in another stage, or I don't know what I'm doing. So what is that conversation look like and what are they getting in return if I call in?

Amy Angelo:

Sure. So anybody could call at any time during the day, you could call as many times as you need to, you could call weekly, you could call year after year. You could call if you are looking for specific resources in your area. That helpline number, our 24/7 helpline is answered by masters level clinicians. And they have access to the, all the areas where we have chapters and all of the resources in those areas.

Amy Angelo:

So if you are calling to look for a support group, if you are calling to register for a program, or maybe you're looking for a specialist in the area, respite care programs, area agency on agings, they have all that information at their fingertips. They also, on the other side of this, have the ability to walk you through a situation. If you yourself are experiencing a different or a difficult or challenging time as a caregiver, or as a person with the disease, you can call that number with whatever question it is that you have with whatever situation is presenting and you could get that support and assistance and guidance.

Curtis Worcester:

That's great.

Ben Smith:

Nice.

Curtis Worcester:

So, Amy, I want to keep going with our conversation here and really dive into the topic today, which is obviously Alzheimer's. So just a foundational question, I guess. So obviously there's a bunch of brain related illnesses out there. We hear terms that just... We feel like the common lingo just gets lumped into mental decline. So can you just take a minute and help us understand Alzheimer's and its relationship with dementia versus what may happen with Parkinson's or Lewy body dementia, for example?

Amy Angelo:

Sure. Yeah. Well, it's a good question because that does happen. But dementia is the umbrella term for an individual's changes really in their memory, their thinking or their reasoning.

Curtis Worcester:

Got it.

Amy Angelo:

There are many possible causes though for dementia and Alzheimer's is the most common cause, and it accounts for 60 to 80% of all cases of dementia. Alzheimer's is hallmark though by the presence of [inaudible 00:17:52] and beta-amyloid plaques, and these are large accumulations of microscopic brain fragments that slow a person's ability to think and remember. But you may have heard of like other causes of dementia, such as vascular dementia, which is marked by changes of the blood flow and the blood vessels in the brain, there's dementia with the Lewy bodies, which you had mentioned, which is identified by specific changes throughout the brain that include the buildup of a protein known as alpha-synuclein and frontotemporal dementia, which is marked by brain cellos in the front section or the frontal lobes of the brain. So we encourage everyone who has any concerns about their brain health to be seen and evaluated though, by a physician for an accurate diagnosis.

Curtis Worcester:

Sure. Yeah.

Ben Smith:

Awesome. Well, so again, now that we know maybe what Alzheimer's dementia is, and also what isn't. So, let's talk about that, because you talked about all the different parts of the brain and that there's different pieces there of causes or things that are, there are signs of different types of dementia there. So what are some signs of dementia versus maybe what is typical age related changes?

Amy Angelo:

Gosh, the signs are really it's what changes that in the changes that occur, that interfere with your daily activities, right? It's memory loss that interrupts your daily life versus forgetting a name or an appointment, or like remembering it a little later. For instance, gosh, you could have a daily route to the store, to your church or something that you've taken for years and then suddenly one day you don't remember how to get there or you get lost going there.

Amy Angelo:

Like that's a sign. It could be challenges with planning or solving problems. So for example, that could be managing your finances. Something that you used to be quite competent in, and now you cannot complete that task. It could be confusion with time or place or season versus forgetting the date occasionally we all do that.

Amy Angelo:

It could even be difficulty in understanding visual images and spatial relationships and versus cataracts. Is there something physical though, well, physical going on. Another is misplace things. We all do that. So like say I come in the house and I misplaced my keys so I could retrace my steps. I could say, "All right, I walked in, I went to the kitchen to get a glass of water. Ah, my keys must be in the kitchen," versus someone who can't do that.

Amy Angelo:

They can't go back and remember that they went into the kitchen and got a glass of water and they still had their keys. Another big sign could be, which is subtle, but you may recognize it is changes in mood or personality. So like withdrawing from work or social situations. This was evident in my father. Clearly, he was a very social person. He had a job that was around a lot of people and he loved it. But in the mid stage of his disease, he started to become agitated and he couldn't hold a conversation like he used to, which was really frustrating for him. And groups of people became just overwhelming and so he withdrew.

Ben Smith:

Which I'm sure, just even in that case of here, he is a social person. That's what recharges him. That's what energizes him in his life. And all of a sudden now he's behaving in a way that is causing people to go away from him or maybe not want to be around him because they don't maybe understand the emotional outburst that might happen or they go, that's not him or he's being really mean to me or being a jerk.

Ben Smith:

So I don't want to be around someone that is mean to me all the time. And you could see where that those sorts of things could create even more withdrawal and then even cause more changes. As they're trying to understand why is this happening where people aren't as friendly with me as they used to be.

Amy Angelo:

Yeah. I mean, there's the question of social isolation cause more dementia but when you are experiencing those withdrawal symptoms, you do become more socially isolated. So it's a vicious cycle.

Curtis Worcester:

Yeah. So I have a scenario question, I guess. So let's say either I am seeing signs say in my spouse of Alzheimer's or say my spouse see signs in me of Alzheimer's. So I want to ask you what's the best way to start a conversation with our loved ones about seeing these concerns?

Amy Angelo:

Yeah. Oh gosh. Well, first recognize that it's always never easy for either party to have this, excuse me, conversation. We've heard from many that some of the most difficult conversations that they've had to have with their loved one is going to the doctor to get a diagnosis from our medical care around the disease.

Amy Angelo:

Deciding when it's time to stop driving that one is very difficult and then making plans for managing finances and legal documents, just to be sure that the person's wishes are carried out and that the cost of care are covered. Just these right are obviously very important things that you want to address. We have educational programs also that offer a variety of approaches on how to have these conversations.

Amy Angelo:

A lot of times people want to wait for the right time to have the conversation, but rarely is there a perfect time. We definitely want you to have the conversation sooner than later to assure that person with the disease has a voice in their planning for their care. So we recommend before jumping into it to develop a plan on how to Finese the conversation you want to ask them, maybe would they want to know if you've noticed any changes in their functioning. Most cases they'll say yes.

Amy Angelo:

In which case that gives you then the opportunity to, and permission to have the conversation with them. If they say no, which could happen you want to focus then on the challenges and the fears that might come up around that maybe why they wouldn't want to. And then of course you might want to have that conversation a little later.

Amy Angelo:

But talk about why it's so important to have a conversation openly. Prepare yourself, take notes, know what you're going to say, use eye statements, avoid blame, consider their feelings. Sometimes there's triggering words, like the word are Alzheimer's that you might want to steer away from and just practice what you're going to say. And then yeah.

Curtis Worcester:

No, I like that. That was all very helpful. And then, so I'm going to keep going now with my hypothetical scenario here. So let's pretend I've had this conversation with my spouse or they've had it with me kind of that next step how do we go about actually getting a diagnosis for these illnesses? So maybe that conversation didn't go well, and I don't want to go to a doctor, like, I'm fine trust me. I'm so I feel those conversations happen. So, what would you say to those people who I guess just how can we go about getting that diagnosis?

Amy Angelo:

Well, if you've had to come conversation and they're not interested in it, you not interested in going to the doctor you could maybe let them know that it's... First let the doctor know I let the doctor your concerns. And then maybe let them know that it's time for their wellness exam at the doctor. And then maybe try and pair that with a fun outing, making it, oh, we're just going to go to get your wellness exam done because the time is now.

Curtis Worcester:

I like that.

Amy Angelo:

If they still don't want to go to the doctor you could do a therapeutic fib and tell then invoking an outside authority, sometimes it's helpful. So you could say that the insurance company requires it for prescription refills or a policy renewal or something.

Curtis Worcester:

Honestly, though. Yeah, no, I [crosstalk 00:26:21].

Ben Smith:

I might be using therapeutic fibs in my future.

Curtis Worcester:

Yeah. That's a good one.

Ben Smith:

Especially with my second grader. Sorry, it's a therapeutic fib you know.

Amy Angelo:

Absolutely. We all know them, but really if it's still not working, I don't know we would encourage you to call the helpline because all the specific advice is different for every family. And they could also locate a specialist in your area.

Ben Smith:

And to your point, Amy, I think also is what you're saying is also trying to maybe the hear the sandwich there of like, well, let's put some good news in the front of it or let's do something fun in front of it. We are going to go to breakfast and then which because you love going to breakfast and then we have a small, little quick wellness check at the doctor and then we got the other thing you like to do is then go to lunch and then we got a lunch planned and that's, those are the, so at least it's a fun day, one little minor thing that sort of stuff.

Amy Angelo:

I used to do it all the time with my father. But ultimately though it's important to get that early diagnosis, if you can to roll out the other factors because if you're seeing signs, it could be mild cognitive impairment for some reason that might not progress to dementia. You could be seeing signs of cognitive decline or confusion for another reason, it could be something physical, like an infection. So crucial to be evaluated by medical professionals.

Ben Smith:

And then Amy, I know we'll talk about it at the end of the show, but obviously, and then in terms of, well then you get your diagnosis and then of whatever that might be. And then being able to say, "Well, hey, whatever we are the earlier we can address it. Then the earlier we can provide some level of medication that may either help slow it. All those things to kind of together are important.

Ben Smith:

So we'll talk about that in a little bit, but I want to flip over to, okay, well obviously we talked about people in Maine there's 29,000 people in Maine living with Alzheimer's [inaudible 00:28:22] disease and there's a lot of caregiver. 46,000 caregivers providing 68 million hours. That's I don't even know what the math is per day on that seems like it's incredible. So if I'm a caregiver here, so let's talk about, all right, let's talk about the caregivers out in the audience and what are some things that they would want to know about understanding and responding to dementia related behaviors. And I want to keep going here with not only just that, but what's the best way to now arm myself with knowledge of good tactics or tactics maybe that I want to steer away from when helping a loved one with a diagnosis?

Amy Angelo:

Yeah. That's funny. The wording that you use, because we have, I mentioned educational programs, our free educational programs. Most are being offered virtually right now. And I think that they are invaluable to caregivers. What we have one specifically called understanding and responding to dementia related behaviors because there is such a need. This disease is not well understood by people, not in the field and often it's just it's your dad, it's your spouse and you can't understand why they're now doing X, Y, or Z. Right?

Amy Angelo:

So we have these programs. We encourage everybody to take them. But I think the most important thing to understand about the disease is that they're their actual physiological changes happening in the brain so that if somebody's exhibiting difficult behaviors, it's happening because of the disease, it's not because the person is trying to be difficult or to challenge you.

Amy Angelo:

Their behavior is because of how the disease is affecting their brain. So having that understanding is the first thing. And we have a program called Understanding Alzheimer's and dementia. We have effective communication strategies. These are all the programs that I wish my family had taken and known about and taken. For caregivers may be experiencing the challenging time like I talked about earlier, the call, the helpline, if you're just at a loss. They could help. They could direct you to resources, education programs, information as you need.

Amy Angelo:

And I encourage caregivers absolutely to join a support group. There's multiple groups now happening, both in person and virtually the Alzheimer Association is back to in person as of April. We're excited about that. There's such a great way to meet other people and to develop a social network of support around you.

Amy Angelo:

We have Q and A sessions. We have live recorded sessions with Q and A. We have the prerecorded sessions. There's just so much information on our website. You could download publications on all topics from finding an in-home care provider, to making an end of life decision, to caregiver stress. All of that information is on our website under publications. I would encourage you to look into a respite program. See what respite programs are in your area. This could be an adult day center, there's volunteer companion programs, even residential assisted livings offer may offer the occasional respite stay.

Ben Smith:

Hmm. Well, and I know that obviously from a caregiving perspective, and I know what you just said, Amy is I think we the big underlying we want to take today is it feels like the feedback we get is that the folks that are caregiving to the loved one, it feels they're siloed. They feel alone. They feel not trained. They like, I was a... I'm good at cooking or I'm good at I was a program manager. I was a banker. I was in retail my whole life.

Ben Smith:

I've never been trained how to help a loved one with a diagnosis and take care of them 24/7. That's not something that I know how to. So I think all the things that you just said is not just from a even just communication, but also what does it mean to be a caregiver in those support groups?

Ben Smith:

We talked all the way back in episode two with Diane Wal at the Eastern area agency an aging. And I know she's, we have a new executive director there now as well, but that's something we're talking about, hey, support groups and saying, "Hey, I'm just starting this role. And I don't know what I'm doing." And having other people there, it's like, "Oh, I was there and this is what I went through. And these are things that I went to do. And these are local things that I found was very useful or I talked to those people and they weren't as useful.

Ben Smith:

All of those things I think are really helpful to go you're not alone. You can find support either just from you as a caregiver of I feel guilty. I feel if I go to the movies and take a two hour break, that I feel like I'm letting my loved one down because I'm taking two hours for myself. All of those feelings and all those things that we're all battling with as caregivers, I see all the value is just probably way more than ever.

Ben Smith:

You, I know it's all free, but that you could ever even charge just because of what you're getting back from the caregiving perspective. So I want to ask just another question though on the other side is what if I can't be a caregiver directly myself? I have maybe other responsibilities, maybe I'm in Phoenix, Arizona and my dad is in Bangor, Maine and I need to have someone take care of him, but it's only me.

Ben Smith:

I'm the only person, the family member in his life that would help, but I can't be there for whatever reason. What sort of things could someone do to find support for someone that they love if they couldn't do that role personally?

Amy Angelo:

The first point of entry usually always is to contact the local area agency on aging. There are 500 [inaudible 00:34:43] Maine, there are all over the country. There are some that cover specific counties or more than one county at once. But you could go to your department of health website and or department of-

Ben Smith:

Health and human services?

Amy Angelo:

Oh, older, it's different in every city but yeah, it could be Health and Human Services. It could be department of aging, but check out those websites and locate your local area agency on aging. They have lists of resources. They could mail you information. They have programs which you might be eligible for. There's many of them have wait lists, but many of them do not.

Amy Angelo:

They could you to different respite programs, different daycare centers even in home care agencies, because that's an option as well. You know, like, labor with the pandemic has been a little difficult. However, there are a lot of agencies that have maintained their caring staff and are doing a lot to keep them and because they understand the value that they provide to caregivers.

Amy Angelo:

So a lot of those in home care agencies can offer flexible hours, can give you respite. If you are out of state, can be the person to care for your loved one in the home, unless it becomes unsafe. And in which case, then there are assisted living facilities, bording homes and nursing facilities that are here for that reason. But for more specific resources in your area you could always call our helpline as well. They know.

Curtis Worcester:

Yeah. That's great. So I want to flip the script a little bit. So I know we just spent a lot of time talking about caregivers and caregiving. So I want to go back to being the individual with an Alzheimer's diagnosis. Just what does that mean for me? What is my future of living with that disease? If you could talk about maybe the early mid and then late stages of living with Alzheimer's.

Amy Angelo:

Sure. Well first I just want to say that there could be a stigma with the disease. So we really want people to understand that life is not over after you receive a diagnosis, you could still live a full and meaningful life with some adjusted expectations. It's very important in the beginning. Once when you first get the diagnosis to start to build that support team around your friends, your family, your neighbors, your physicians.

Amy Angelo:

Connect with the local Alzheimer's Association, arm yourself with those resource right up front, start taking the educational programs, join a support group for early stage, start to connect with those who like you said, have been through it, who are going through it, many areas we have early stage social engagement programs that you could get involved in. But in the beginning, stay active, continue to eat healthy, make sure that there's a plan in place.

Amy Angelo:

You might have trouble in early stages finding the right ward or forgetting things from time to time or forgetting how to get from place to place. Faces become unfamiliar times where they can't replace a face with a name, mid stages, you start to withdraw a little bit more agitation. Things become a lot more difficult and in late stages you need more care. Usually you can't be left alone and you do need the supervision and support of those around to you.

Amy Angelo:

We just advised staying healthy, active, eating healthy, getting the plan in place that addresses your financial, emotional, social, physical needs. And use the resources and support available to you. Is to stay positive. The more planning you do upfront, the better you are.

Ben Smith:

I think those are really awesome tips. So especially for early mid and late there. And you raised up a point that I want to ask about is because you hear the myths a little bit. And you hear myths and lots of different things. You can't sit again, I'm talking my 10 year old, you can't sit two feet away from the television. I'm always going to go blind, you can't do that. So things that we hear in terms of myths and one thing from this end is we hear a lot of, I need to keep busy and if I don't keep with hobbies, work, social, if I stop and I just sit and watch TV today or, and I hang out, I'm just going to develop Alzheimer's and I'm just going to wither away. So true or false? I know you said a little bit of it. So I want to see about what would you respond to that statement?

Amy Angelo:

Well, so we know a few things.

Ben Smith:

Yeah. I hope so.

Amy Angelo:

Sitting around doesn't necessarily mean that you're going to get Alzheimer's. You might need to sit around. You might need to take a rest. We do know that Alzheimer's though is not a normal part of aging. And we know that living a full and active lifestyle though, is known to reduce risk.

Ben Smith:

Doesn't mean it absolutely will. And it doesn't mean if you do sit around it's going to definitely happen to you.

Amy Angelo:

Yeah. I would say not to put too much into the myths that you hear, but really do what you know is good for you. If you feel you need to sit around and rest, then maybe that's what your body needs. But if you feel you're being lazy and your mind isn't being active, then get up and go do something engaging.

Curtis Worcester:

I like that a lot. And I think you just touched on this, but my next question is, so what are some things that we can do all of us today to prevent or to help prevent developing Alzheimer's down the road?

Amy Angelo:

Mm, lots of studies, lots of studies. We funded several studies, which focused on lifestyle. Which is awesome. There was one called the US pointer study and that's based on a successful study at a Finland around diet and lifestyle. So you could read about that on our website, we advise absolutely love your brain because we know that what's good for your heart is good for your brain.

Amy Angelo:

We have a brochure, 10 ways to love your brain. Some of which are get plenty of sleep, keep learning and challenging yourself. We know so what's good for your heart is like the dash diet, the Mediterranean diet, exercise. Break a sweat every day. Don't smoke. So yeah. Just stay active and be healthy.

Curtis Worcester:

And, and so Amy and I guess want to ask about, so today and we talked about also from 2009 to now that we're seeing more caregiving happening and it seems there's some, and again, from anecdotally as financial planners. We are looking at the people are looking to live longer, that they are doing some of the things that you're saying, or the message is getting through. And we as a society, hopefully, maybe there's things we are doing a little bit better, maybe there's things we aren't doing better, but maybe there's things we are and that's leading to us to live longer lives and perhaps living longer lives might lead to maybe some more brain health issues over time as well.

Curtis Worcester:

So what do you see coming in the horizon here from not only just where we are in the mental health perspective and dimension Alzheimer's where are we? Are we getting worse? Are we getting better? But also what are you seeing new advances happening right now around treatment? Because I think those two things go hand in hand.

Amy Angelo:

Yeah. It's a super exciting time right now in research around this, as you may know, there are plenty of drugs that have treated the symptoms of dementia Alzheimer. They've been around for quite some time however, the first drug to address the underlying pathology of the disease was approved by the FDA this past June called Aduhelm. [inaudible 00:43:28] contentious though, because the CMS decision limits coverage of ii but it's a beginning.

Amy Angelo:

It's not perfect, it's a beginning and there are also other drugs that are in clinical trials right now they're called the monoclonal amyloid bonding drugs. They're in the pipeline and they're showing promise for future treatments. So very exciting stuff. And because there's so much going on, it's continualing developing and changing. We host a research page on our alzheimer.org website with loads of information related to the research that we fund and the current clinical trials. So I would advise to check that out and you could read all about the current research, everything that's being done in the field right now.

Ben Smith:

And Amy just tying it together, because I think you said this in your intro about the Alzheimer's association in the Maine chapter, is obviously doing the fundraising and doing all the work. Not only just helping the resource for people that are afflicted with it today in the caregivers that are supporting that population, but also is the funding of that is going to this research, it's going to the advancements, it's going to that future and that mission statement that you shared about, "Hey, we're dreaming of the day when we've ended Alzheimer's and dementia related illnesses."

Ben Smith:

So I just always like to bring the two together of, "Hey, we're doing all this for a reason and also isn't working," and to go, "Hey, in June we just had a really great treatment that's now becoming available and becoming a start to how we can start addressing some of this, not just from the symptom perspective, but the root cause and help going. That's really exciting I think from hey we're starting to see momentum and build and not just, yes, we got research and we continue to pay for more research and we're not seeing this over the hump thing. So that's really exciting, I think for the entire community there, that congratulations to the entire group.

Amy Angelo:

Thank you, yes. I'm more hopeful now than I've ever been.

Curtis Worcester:

That's great. So we've reached the end of our conversation, Amy. I do have one last question for you. So obviously the name of our show is Retirement Success in Maine Podcast. So we love to ask all of our guests, regardless of what we talk about for the first bulk of the show, how are you going to find your personal retirement success when you get there?

Amy Angelo:

Gosh, I hope I'm prepared. I think being prepared helps anyone be successful in anything that they want to do. So I put a lot of value in planning. I want to hopefully live as with little stress as possible when I get to retirement age. So I'd like to be as financially savvy now as possible. Because I don't know what the future will hold. For my healthcare. I want to assure that I have adequate savings so that my end of life care can be planned and paid for financially and in every way. I have wishes clearly stated and certainly I want to live my life now to the fullest within my means and I want to live a purpose driven life filled with exercise and great healthy food and meditation and lifelong learning and all the things that we know are good for your brain.

Curtis Worcester:

That's fantastic.

Ben Smith:

Well, Amy, we really can't thank you enough for coming on our show and sharing with us about Alzheimer's Association, your personal journey and your personal passion for what gets you up in the day. You're really a great ambassador in lots of different ways to, for the community and also for everything that Alzheimer's Association I think really stands for. So thank you so much for sharing it. And we really can't thank you now for coming on and we'll hope to catch you next time.

Amy Angelo:

Oh, thank you so much for having me. It's been wonderful. [crosstalk 00:47:43].

Ben Smith:

Take care. yeah. Thanks.

Amy Angelo:

Bye-bye.

Ben Smith:

Bye-bye. So I think Amy Angelo do at an awesome job today, really walking us through even just from the Alzheimer's what it is, dementia, what resources are out there? What about the Alzheimer's Association going through what if I'm diagnosed? What if somebody I love or I am taking care of is diagnosed. All of those things I think are really pertinent questions that I think our population really has a lot of questions on and that hopefully you out there also maybe got something out of all those points.

Ben Smith:

So as we always like to wrap up our shows, we always like to take that yellow highlighter underline something of something we personally took away from today's show. So Curtis, what was a lesson you took away from our conversation with Amy?

Curtis Worcester:

I think to be short, it is use the resources that are out there. I think this whole conversation, everything just cycled back to how many great resources are out there for regardless of the stage, whether it's, you that's you worry that you're showing signs of developing Alzheimer's your spouse, you're caregiving, there's resources for caregivers, there's educational like there's just so much out there and it's free. I mean, not like we were talking about it in the show, it's probably worth a lot more than being free, but it's free out there.

Curtis Worcester:

Use it. Amy talked about, she wished she said it a few times. She wished that her family had the resources or used resources like this as both her grandmother and her father lived through this. So I think to not hone in on something specific, but I think just the whole conversation of just how important and how useful these resources are to use, I think is just a big takeaway for me.

Ben Smith:

Yeah. And I know we, in our show, this has been a theme for us is we'v dabbled in this lots of different ways. And one was we talked about Dr. Cliff Singer from Northern Light Acadia Hospital. And so we talked about from the medical perspective and I think where we want to go with Amy was a little bit more of the resources in it perspective. And what does it mean this actual diagnosis and what does it look like?

Ben Smith:

And I know in episode 44, we talked to Iris Waichler about, "Hey, I'm a caregiver and what does it mean to balance taking care of somebody else? But I also have my own life to live and I want to do some things in my life. And just because somebody else gets sick doesn't mean that I need to stop progressing in what I am and who I want to be and what I want to do."

Ben Smith:

So, I think all these are a nice little bridge and a nice little theme about companions to each other about surrounding this conversation, this fear that we get with our clients. So I thought again, Amy did an awesome job with it. And going through all that, especially with some there's a sunrise on the horizon, I think around treatment and advances that are happening, which is really awesome. So we are at episode 62.

Curtis Worcester:

62.

Ben Smith:

So we are I think we're officially eligible for social security now.

Curtis Worcester:

That's right. I don't know if we're going to claim quite yet, but we're there. We're getting there.

Ben Smith:

We got to do that analysis that we should be claiming at 62 or full retirement age or 70. But so for those that want to dig it a little bit more to the Alzheimer's Association, you can go to our website, blog.guidancepointllc.com/62 or for 62, the episode. You can check out the resources there. And again, our transcription will be there as well for if there's anything you want to kind Zoom in on.

Ben Smith:

Feel free, but we really appreciate your listenership. We're just very privileged. And we're very grateful to have you on our journey with us and staying in tune with us. So all the best to you. Hope you have a great day today and we'll catch you next time.