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The Alzheimer's Podcast
29 minutes | Apr 23, 2021
149 "What worries me most is the psychological impact"
In this episode, we're picking up where we left off in episode 148: “I felt I had been harmed” with guest Jamie Tyrone. Jamie is the author of Fighting for My Life: How to thrive in the shadow of Alzheimer's. She unexpectedly found out about her risk of developing Alzheimer's disease in the course of genetic testing for something else. As you can imagine, that had a significant impact on her life. More about that in a minute. Meanwhile, fast-forward to February 2021. Phil Gutis, who is our Assistant Sherpa on the show and was diagnosed with young onset Alzheimer's five years ago, landed us an interview with Dr Jason Karlawish, who is both Co-Director of the Penn Memory Center and part of Phil's neurology team. Dr Karlawish came on the pod to discuss his new book The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. That conversation, featured in episodes 146: “It's a disease of autonomy” and 147: Safe, Social, and Engaged covered a lot of ground, as the title of the book suggests it would. One of the most intriguing ideas in the book is of creating a new diagnosis called "pre-clinical Alzheimer's.” Being able to diagnose people with "pre-clinical Alzheimer's” means they wouldn't be showing any symptoms of the disease, but rather that they have genetic markers indicating they’ll likely develop it within their lifetime. People could live with a diagnosis of "pre-clinical Alzheimer's” for 30, 40, 50 years prior to showing symptoms. Now, back to Jamie Tyrone. She's been living with the information she has a significantly high risk of developing Alzheimer's disease for 11 years now. So of course we wanted to hear her thoughts on this idea of a "pre-clinical Alzheimer's” diagnosis. In this episode, Phil and I have a conversation with Jamie about the psychological impact of genetic testing and knowing you have a diagnosis, or are at a significantly higher chance of eventually getting the dreaded diagnosis. The conversation got more real and raw than any of us anticipated. Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you've heard/read/seen something helpful on The Alzheimer's Podcast or the Dementia Sherpa blog or YouTube channel, purchasing through the links on this page is a way to show support---thank you!).
29 minutes | Apr 10, 2021
148 "I felt I had been harmed"
We originally introduced you to our guest today, Jamie Tyrone, in episode 100: Enjoy Us in the Moment. In that episode, Jamie starts walking us through her experience of finding out (by accident!) she has two copies of the ApoE-4 gene, which puts her at a 91% lifetime risk of getting Alzheimer's disease. In addition to having a great-grandmother, grandmother, and two great-uncles who died of Alzheimer's disease, at the time Jamie found out her own genetic information, her dad was living with Alzheimer's disease. This is Jamie's third appearance on the show; episode 104: I Call it a Gift, is part two of the conversation we started in episode 100. We asked her back for a few reasons: number one, we wanted to hear Jamie's take on Dr. Jason Karlawish's idea about introducing a new diagnosis of "pre-clinical Alzheimer's," meaning people could theoretically be diagnosed decades before symptoms become apparent. (Dr. Karlawish talks about this in his new book The Problem of Alzheimer's and in episode 146: "It's a disease of autonomy" and episode 147: Safe, Social, and Engaged.) As you can no doubt imagine, Jamie is in a position to speak authoritatively on what it's like to learn about and live with that information (which she discusses in detail in her book Fighting for My Life: How to Thrive in the Shadow of Alzheimer's.) Number two, Jamie is a terrific storyteller---as you'll hear. And number three, Phil and I just adore her! :) This episode is part one of three in our latest conversation with Jamie. Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you've heard something helpful on The Alzheimer's Podcast, purchasing through these links is a way to show support---thank you!).
32 minutes | Feb 23, 2021
147 Safe, Social, and Engaged
This episode is part two of our conversation with Dr. Jason Karlawish, author of the new book The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. The book is out today (February 23, 2021) and is available as both an audio book on audiobooks.com, as well as hardback at your favorite bookseller. If you haven't yet listened to the first part of our conversation with Dr Karlawish in episode 146: It's a Disease of Autonomy, you'll want to hit pause and go back to that episode to catch up before coming back to this episode. Episode 146 explains the historical and political context that got us to where we are today and the way it influenced policy decisions around Alzheimer's disease. This episode focuses more on my main interest: the humans affected, and our relationship with them. Phil Gutis, former New York Times journalist and our Assistant Sherpa on The Alzheimer's Podcast, leads the conversation with Dr. Karlawish. Jason Karlawish is a physician and writer. He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He is the author of the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and his essays have appeared in The New York Times, The Washington Post, Forbes, and the Philadelphia Inquirer. He is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania and Co-Director of the Penn Memory Center, where he cares for patients. He lives in Philadelphia. Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you’ve heard or read or seen something helpful on The Alzheimer’s Podcast or the Dementia Sherpa blog or YouTube channel, purchasing through these links is a way to show support. Thank you! 🙂
31 minutes | Feb 18, 2021
146 "It's a disease of autonomy"
Phil Gutis, former New York Times reporter and our Assistant Sherpa, interviews Dr. Jason Karlawish, author of the new book (available 2/23/21) The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Dr. Karlawish was very generous with his time, so this episode is part one of two. In part one, the wide-ranging conversation touches on: Aducanumab How we got to a place that -- 100+ years later -- still doesn't include a cure The concept of "pre-clinical Alzheimer's disease" Public stigma and self-stigma Why Dr. Karlawish believes there's reason to hope in the (relatively) near-term. Links to everything in the show notes at DementiaSherpa.com/episode146.
33 minutes | Dec 2, 2020
145 "We can laugh and have fun and be silly"
Mikaela Wilson and Spencer Coombe both started out working as direct care staff in long-term care as teenagers. While working as direct carers, they had very different experiences. Comparing notes, they came to believe they could create something that would give clients the best experience possible. But they didn't stop there. After co-founding Senior Support Services of Southern Ontario in Hamilton, ON, they also co-authored a book, Any Game for Any Brain, based on what they saw was working for their clients. As Spencer says, "We discovered that when seniors are respected, valued, and cared for, a real difference is created. We wanted to build a business that runs on passion, care and the goal to better someone's life." Links to order Any Game for Any Brain *and* enter the drawing for one of four complimentary copies generously donated by CIRA Ontario are in the show notes at DementiaSherpa.com/episode145. Now, it's my pleasure to have a conversation with Spencer and Mikaela, two women I'm certain are well on their way to making the world a better place for people living with dementia.
38 minutes | Nov 23, 2020
144 "Those people have names"
After reporting on the FDA Advisory Committee meeting for Biogen's phase 3 trial drug aducanumab, Phil started wrestling with two parts of himself: should the guy who believes in science prevail, or the guy living with the diagnosis? This week, picking up where we left off in Episode 143: "We have a friend," Christy throws in her emotional thinking on the topic. More at DementiaSherpa.com/episode144.
39 minutes | Nov 12, 2020
143 "We have a friend"
This episode was recorded November 9, 2020. Phil and Christy discuss President-Elect Biden and Vice President-Elect Harris's victory and the ongoing impact of COVID-19 within our community. But mostly, Phil wrestles with two parts of himself about what happened last week at the FDA Advisory Committee: should the guy who believes in science prevail, or the guy living with the diagnosis?
44 minutes | Aug 9, 2020
142 The All-In Method for Difficult Conversations
In This Episode We've got two top-notch guests on the show today, Alexandra Jamieson and Bob Gower. They're co-authors of the new book, Radical Alignment: How to Have Game-Changing Conversations That Will Transform Your Business and Your Life. You won't be surprised to hear we're going to focus on the "your life” aspect today. Be sure to listen all the way to the end of the episode for details on a generous special offer if you order the book before August 10, 2020--that's tomorrow!--or pause the episode and head straight over to RadicalAlignmentBook.com right now if you can't stand the suspense. Alexandra and Bob both have certifications in Applied Positive Psychology and Alexandra is also a Certified Holistic Health Coach. Alexandra is a success mentor and life & health coach to creative, professional women who want it all. She is the best-selling author of Women, Food & Desire, co-creator and co-star of the Oscar-nominated documentary Super Size Me, and a highly-sought-after wellness expert. Bob helps organizations move faster, create better products, and become happier, more engaging places to work. He is an authority on agile software development, lean theory, and responsive organizational design, and has advised leaders at numerous companies—including GE, Ford, Chanel, PG&E, and Spotify—in creating more effective organizations. He is the author of Agile Business: A Leader’s Guide to Harnessing Complexity and speaks regularly on organizational development and leadership. All of that is certainly impressive, but honestly, I'm most excited about their new book, Radical Alignment. Once you hear what they have to say, I think you'll be excited about how it can impact your relationships too.
37 minutes | Aug 4, 2020
141 "What did you do? What did you say?"
This episode is part two of my conversation with Mikaela Wilson and Spencer Coombe, co-founders of Senior Support Services of Southern Ontario and co-authors of Any Game for Any Brain. Last episode, we talked about the Canadian military's report on five nursing homes in Ontario and the awful conditions they found there. As Spencer said, it was shocking, but “we weren't shocked.” John Lewis had it exactly right when he said, “When you see something that is not right, not just, not fair, you have a moral obligation to say something, to do something. Our children and their children will ask, ‘What did you do? What did you say?'” And that's exactly why we continue to speak up on The Alzheimer's Podcast. We discuss more problems in long-term care in both Canada and the US in this episode. Bringing problems to the light is the important precursor to solving them, and we talk about some solutions in this episode, too. This episode was recorded July 14, 2020, and btw, is rated explicit because I use 's---show' to describe the US response to the coronavirus. Transcript at DementiaSherpa.com/episode141.
25 minutes | Jul 22, 2020
140 "We weren't shocked"
Mikaela Wilson and Spencer Coombe, co-founders of Senior Support Services of Southern Ontario and co-authors of Any Game for Any Brain, discuss the Canadian military's report on abysmal conditions in five Ontario nursing homes. Full transcript and links at DementiaSherpa.com/episode140.
49 minutes | Jul 14, 2020
139 This is Going to Impact Your Family
This episode was recorded May 19, 2020. Phil and Christy discuss what's happening in long-term care in the US and Canada during the pandemic and posit why it's so abysmal. Plus, they manage to work into the conversation Michael Jordan, Wayne Gretzky, Jerry Rice, Jeff Bezos, Kathy Bates, and Adam and Eve. Full transcript at DementiaSherpa.com/episode139. All links in the transcript.
33 minutes | Jun 28, 2020
138 Laurel + Hardy Throw a Party
We're fast-forwarding through the editing queue to bring you this episode recorded June 23, 2020. We wanted to make this episode as timely as possible for a few reasons: Phil Gutis (our Assistant Sherpa on The Alzheimer’s Podcast) and his husband Tim Weaver once again did a Longest Day event on behalf of The Alzheimer's Association. The Longest Day was last weekend, but the fundraising doesn't close out until August 31, 2020, so there's still time to donate here. Phil describes their Longest Day experience as Laurel & Hardy Throw a Party, and gives up the details. There's a lot of laughing in this episode, and sometimes--like if we've been lucky enough to survive 2020 so far--we just need to laugh. We finally got Tim on the show!! He provides some great insight and what I believe are three of the most valuable pieces of advice a dementia care partner will ever get. Full transcript + show notes at https://www.dementiasherpa.com/episode138
26 minutes | Jun 11, 2020
137 What criteria makes a person valuable?
This episode was recorded April 27, 2020. Just like last week’s episode, we again talk about the value of a human life. It’s a recurring theme on The Alzheimer’s Podcast, because we believe that when others don’t see people living with a dementia diagnosis as having value simply because they’re our fellow humans, then every human life can be devalued. And when that happens, inhumane treatment can be justified based on any criteria those in power come up with in the moment. Obviously, we had no idea when we recorded this episode that it would be released during a time of global protests demanding the perfectly reasonable acknowledgement that Black lives matter. We are in no way looking to co-opt a movement or diminish the message that Black lives matter. Rather, we stand in solidarity. Full transcript: https://dementiasherpa.com/episode137 *NEW* LIVE Master Class Training "Dementia Care Basics: Caring for Your Person at Home." Details: https://dementiasherpa.com/masterclass/
34 minutes | Jun 6, 2020
136 What's the Value of a Human Life?
This episode was recorded April 20th, 2020. At one point, Phil refers to protesters, and who he’s talking about are the armed white people who showed up at statehouses wanting to get a haircut, go to the movies, open up the economy, that sort of thing. So, I don’t want there to be any confusion because of when this episode is being released (in early June) about who Phil is talking about. One other warning: this episode, I think, really reflects the anger and frustration that Phil and I were feeling in mid-April. Many of you have told me how much you appreciate me putting a positive message out into the world. But I think there’s also a time to not only have righteous anger but to share it with the rest of the world. Finally, unlike virtually every other episode of The Alzheimer's Podcast, this episode is marked "E," because I use the s-word, once. Full transcript at DementiaSherpa.com/episode136.
44 minutes | May 22, 2020
135 "Where isolation and solitude come in handy"
Show notes + transcript: DementiaSherpa.com/episode135. This week, I got author and blogger Donna Thomson to come back to the show. She has so much wisdom to share about solitude, a timely topic in this time of Covid-19. Although many states are “reopening” right now—and we’ve got more on that in upcoming episodes—Donna’s thoughts on solitude and isolation are relevant to care partners no matter what’s going on in the outside world. Donna is an exceptionally experienced care partner, having first become one as a teenager. As you'd expect, she's developed an enormous amount of wisdom along the way. You'll also no doubt note the empathy and compassion that comes through loud and clear in the soothing sound of Donna's voice. The mother of two grown children, one of whom has severe disabilities, Donna also cared for her mother who had a diagnosis of dementia and passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). She blogs regularly at The Caregivers’ Living Room and teaches caregivers at McMaster University in Ontario, Canada.
48 minutes | Apr 27, 2020
134 The Unexpected Journey of Caring
Full show notes with transcript + links: https://DementiaSherpa.com/episode134 Christy gets to talk with the extraordinarily-generous-with-her-time caregiver, author and activist Donna Thomson about a wide range of topics that affect care partners, including: Caregiving literacy + advocacy Anosognosia Hyperintolerance + "slices of a pie" The masks we wear The hidden opportunities in care partnering When your family isn't who you think they should be Intentional caregiving (vs "head on fire" caregiving) The importance of what we focus on as care partners And so much more! Donna is an exceptionally experienced care partner, having first become one as a teenager. As you'd expect, she's developed an enormous amount of wisdom along the way. You'll also no doubt note the empathy and compassion that comes through loud and clear in the soothing sound of Donna's voice. The mother of two grown children, one of whom has severe disabilities, Donna also cared for her mother who had a diagnosis of dementia and passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (The House of Anansi Press, 2014). She blogs regularly at The Caregivers’ Living Room and teaches caregivers at McMaster University in Ontario, Canada.
30 minutes | Mar 27, 2020
133 Joy-Filled Visits...in Your Own Home
Full transcript + links: DementiaSherpa.com/Episode133 Let’s just have some fun, already! If you’re looking for ideas of what to do with your person while you’re living la vida (stir) loca, this is the episode for you. Julie Bigham, founder of Joy-Filled Visits and a former activities director, shares ideas and tells a moving story about a woman able to engage more than her family thought possible.
7 minutes | Mar 24, 2020
BONUS Visiting from Afar
Christy offers a cheap, low-tech way to make sure your person knows you're thinking of them with this bonus tip.
33 minutes | Mar 24, 2020
132 And Here We Are
Show notes + links: DementiaSherpa.com/Episode132. Phil Gutis, our Assistant Sherpa, and Christy discuss what life is like right now in the shadow of Covid-19, including ways families can stay connected with their person who lives in long-term care. Complimentary Strategy Call for Dementia Care Partners March Master Class Training: Reducing Your Chances of Developing Dementia
20 minutes | Mar 3, 2020
131 How Coronavirus Could Impact Your Loved One Living with Dementia
If you've been following the story of coronavirus spread over the past several weeks, you may be freaked out right about now. News came out over the weekend that a long-term care community in the Pacific Northwest has been impacted, with both residents and staff affected. As I’m recording this the morning of March 3, 2020, 4 residents in that nursing home have died. So even if you're a cool kitten not prone to panic, you may have questions about how the spread of coronavirus could affect your person. Complete transcript + links: DementiaSherpa.com/Episode131.
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