AlzAuthors: Untangling Alzheimer's & Dementia

Donna Thomson and Dr. Zachary White are co-authors of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019).

Donna Thomson is a caregiver, author, and activist.The mother of two grown children, one who has severe cerebral palsy and medical complexity, she also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96.

She is also the author of The Four Walls of My Freedom: Lessons I've Learned from a Life of Caregiving (McArthur and Co., 2010 and The House of Anansi Press, 2014), and blogs regularly at The Caregivers' Living Room. She is a board director of the Kids Brain Health Network and is a leader and instructor in family engagement in health research. She also teaches families how to advocate for care at The Advocacy School and at Huddol.com.

Dr. Zachary White Zachary began living, researching, and exploring the caregiver experience in 2002 during his mother's diagnosis with brain cancer. His research and teaching focus on helping people manage meaning and communicate life experiences amidst high levels of uncertainty and stress. He is the founder of the award-winning blog and resource for caregivers called "The Unprepared Caregiver."

He earned his Ph.D. in communication from Purdue University and is an Associate Professor in the James L. Knight School of Communication at Queens University of Charlotte. He has researched a range of care experiences, including birth (parental NICU experiences), chronic caregiver experiences, and end-of-life caregiving (hospice care). His academic articles have been published in Management Communication Quarterly, Journal of Family Communication, Communication Research Reports, OMEGA: Journal of Death and Dying, Health Communication, and Volunteering and Communication: Studies from Multiple Contexts.

In this episode, we discuss the delicate relationship between caregiver and care receiver, the multiple roles caregivers fulfill, authenticity in caregiving, and the value of silence.

Read Thomson and White’s AlzAuthors Post: https://alzauthors.com/2020/02/04/unexpected-journey-caring-thomson-white/

Start reading The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver now!

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Donna Thomson

Blog: The Caregivers' Living Room

Facebook: https://www.facebook.com/donnathomsonauthor

Twitter: https://twitter.com/Thomsod

Connect with Zachary White

Blog: The Unprepared Caregiver

Twitter: https://twitter.com/ZMWhite

Facebook: https://www.facebook.com/unpreparedcaregiver/

About the Podcast

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort, and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

AlzAuthors.com

Susan Cushman cared for her mother during her dementia journey and considered it a blessing. One of the upsides to Alzheimer’s, she says, is that she got a new mother. After a lifetime of abuse, her mother “forgot” to be cruel to her, and their relationship improved. About her book, Tangles and Plaques: A Mother and Daughter Face Alzheimer’s,” she says, “The tangles and plaques that destroyed Mother’s brain weren’t only in her brain, but also in our relationship.”

She is also the author of John and Mary Margaret, a novel that explores interracial relationships and the complexities of reconnecting with a lost love when your spouses wind up in the same memory care center.

Much of her writing is infused with elements of her own life, including the very mystical spirituality of her Orthodox Christian faith and the personal demons she has been chasing since childhood. Her essays, short stories, memoir, and novels all reflect what she has learned through many dark nights of the soul, but also contain elements of hope and healing, and honor her Southern roots.

In this episode, we discuss how she discovered an unexpected upside to Alzheimer’s, the downside of being a long-distance caregiver, and the healing power of forgiveness.

More about Susan

Susan was co-director of the 2013 and 2010 Oxford (Mississippi) Creative Nonfiction Conferences.She was director of the 2011 Memphis Creative Nonfiction Workshop. She was a panelist at the 2017 Decatur Book Festival, the 2012, 2017, and 2018 Southern Festival of Books, the 2017 and 2018 Mississippi Book Festival, the 2013, 2017, 2018 and 2019 Louisiana Book Festival, the 2018 Mississippi Writers Guild Conference, the 2018 Alabama Writers Conclave Conference, the 2018 Pat Conroy Literary Center Visiting Author Series, the 2019 Southern Literary Festival, and the 2020 AWP (Association of Writers and Writing Professionals) annual conference.

Her published books include four she has written: John and Mary Margaret (novel), Friends of the Library (short stories), Tangles and Plaques: A Mother and Daughter Face Alzheimer’s (a memoir), and Cherry Bomb (a novel).She has edited three collections of essays: A Second Blooming: Becoming the Women We Are Meant to Be, Southern Writers Writing, and The Pulpwood Queens Celebrate 20 Years! In addition, she has over a dozen essays published in four anthologies and various journals and magazines.

Purchase Tangles and Plaques and John and Mary Margaret now!

Read Susan’s AlzAuthors posts

Susan Cushman Reveals Alzheimer’s Caregiving Struggles with Mom: Tangles and Plaques

Three AlzAuthors Featured in Chicken Soup for Soul Book

Susan Cushman Explores Interracial Relationships and Dementia in New Novel

Connect with Susan

Website: http://susancushman.com/

Blog: http://susancushman.com/author/susan/

Facebook: http://www.facebook.com/sjcushman

Instagram: https://www.instagram.com/sjcushman/

Twitter: http://twitter.com/SusanCushman

YouTube video: https://www.youtube.com/watch?v=CmK08WUEuxQ

About the Podcast

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort, and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

Leah Stanley is the author of Goodnight, Sweet: A Caregiver’s Long Goodbye, the memoir she wrote years after caring for her beloved grandparents, both diagnosed with dementia. At the time she was a 29-year-old newlywed with no clue about elder issues, dementia, or caregiving. She had to learn fast! When her dementia journey ended, she realized she wanted to take her hard-earned lessons and share them with others so they would not be as unprepared as she was when duty called. Her degree in journalism gave her the confidence to start writing and she began a memoir, and then put it on hold for years while she raised her children. When they were teens and no longer needed her full-time, she got back to writing and published her book in 2019. This led to her becoming a caregiver advocate and a well-known speaker in the Houston area.

In this episode we discuss the challenges of becoming a caregiver at a young age, how to continue a loving relationship with elders after a dementia diagnosis, andthe sweet story behind the title Goodnight, Sweet.

Read Leah’s AlzAuthors Post: https://alzauthors.com/2019/05/21/meet-leah-stanley-author-of-goodnight-sweet/

Start reading Goodnight Sweet now! https://amzn.to/3fXCeme

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Leah Stanley

Website: http://www.leahstanley.com/

Facebook:https://www.facebook.com/LStanleyBooks

Twitter:https://twitter.com/OneCareVoice

LinkedIn:https://www.linkedin.com/in/leahstanleybooks/

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

Joy Johnston is a digital journalist, author, and caregiver advocate based in Atlanta, Georgia. Her collection of personal essays on caregiving, titled The Reluctant Caregiver, received a gold medal at the 2018 Independent Publisher Book Awards. She also writes about dementia and caregiving on her blog,The Memories Project, which was honored as one of the “Best Alzheimer’s Disease Blogs of 2020” by eMediHealth, and she is a featured author onThe Caregiver Space.

An only child, she assisted her mother as a long-distance caregiver to her father with dementia for ten years. A few years after his passing, she left her career and home to move across country to care for her mother when she was diagnosed with stage 3 colon cancer. This was not a role she wished for as their relationship had always been challenging.

In this episode we discuss the difficulties of managing your parents’ health care needs as an only child living hundreds of miles away, the shortcomings of rural health care, and why paid caregivers need recognition for the value they bring to family caregiving.

Read Joy’s AlzAuthors Post: https://alzauthors.com/2016/09/21/meet-author-joy-johnston/

Start reading The Reluctant Caregiver now! https://amzn.to/38jsVZs

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Joy Johnston

Website: http://joyjohnston.com/

Memories Project: https://memoriesproject.com/

Facebook:https://www.facebook.com/TheMemoriesProject/

Twitter:https://twitter.com/joymemories

LinkedIn: https://www.linkedin.com/in/joyjohnstonatl/

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort, and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

Tracey Shorthouse was diagnosed with early onset Alzheimer’s and Posterior Cortical Atrophy in 2015 at age 45. A staff nurse in the United Kingdom’s National Health Service, she had to retire due to her diagnosis.

Not being one to give up, she started to write short stories but found writing poetry was easier for her brain to contend with. Although at first her poems were about how she coped with her dementia, she then started writing about life, nature, and other things. In 2017 she published a book of poetry named I Am Still Me.

She stays active on social media, Facebook and Twitter, and is a well-known speaker on dementia in her community.

In this episode we discuss her life after being diagnosed at such a young age, what she’s lost and gained, how she came to write poetry post-diagnosis, and her hopes for the future.

Read Tracey’s AlzAuthors Post: https://alzauthors.com/2017/05/24/meet-poet-tracey-shorthouse/

Start reading I Am Still Me now! https://amzn.to/3xQuBnw

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Tracey Shorthouse

Website:

Facebook:https://www.facebook.com/tracey.shorthouse

Twitter:https://twitter.com/TraceyShorty28

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

This is the third and last in our Summer Book Series with HFC, aka Hilarity for Charity, for 2021. In this session Loretta Woodward Veney joined us for a discussion of her book Being My Mom’s Mom: A Journey Through Dementia from a Daughter’s Perspective. We talked about her work as a LEGO Ambassador and how that fits into her dementia care for her mom, and discussed other activities to help caregivers connect and engage with their loved ones.

About Loretta Woodward Veney

Loretta Woodward Veney is a special friend to AlzAuthors and was one of the first authors to appear on our blog in July, 2016. Her mission is moving caregivers from "I give up" to "I've got this"! She recently retired from a 35-year career in security management and corporate training and is embarking on a new full-time career as a motivational speaker and trainer for those caring for a loved one with dementia. She is also a LEGO Ambassador, sharing her lifelong love for the little plastic building blocks with strategies to nurture creativity, communication, and connections between those with dementia and their loved ones.

In 2006, when Loretta's beloved mom Doris was diagnosed with dementia, she began learning everything she could about the disease, and hoped to share that information so others could be better prepared than she was for this diagnosis. In 2013, that hope turned into her first book, Being My Mom's Mom, which highlights the first six years of the family's dementia journey. An updated version was published in December 2019 and includes a new chapter that picks up at the end of the first book until late 2019.

Soon after publishing Being My Mom’s Mom, Loretta began receiving requests for presentations on her caregiver experience, and since that time has given more than 275 presentations and keynote addresses to audiences across the United States.

She has published two additional books for caregivers: Refreshment for the Caregiver's Spirit, a motivational photo book, and Colors Flowing from My Mind, an easy-to-use coloring book for those with dementia.

Read Loretta’s AlzAuthors posts:

Meet Loretta Woodward Veney, Author of Being My Mom’s Mom, July 7, 2016

Loretta Woodward Veney Updates Her Memoir, Being My Mom’s Mom, May 26, 2020

Start reading "Being My Mom’s Mom: A Journey Through Dementia from a Daughter’s Perspective": https://amzn.to/2BCS18s

Connect with Loretta Woodward Veney

Twitter:

https://twitter.com/lwveney

Conquering

Life Blog: https://lwveney.wordpress.com

Website:

https://lorettaveney.com

About the Podcast

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, marketing expenditures to improve our reach, expand our content, and promote our authors, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

This is the second in our Summer Book Series with HFC, aka Hilarity for Charity. In this session Daniel Potts, MD, FAAN, and his wife Ellen Potts joined us for a discussion of their helpful book A Pocket Guide for the Alzheimer’s Caregiver.

Daniel C. Potts, MD, FAAN is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, he also has been designated an Architect of Change by Maria Shriver. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award, which honors physician alumni whose lives epitomize the ideal of service to their communities.

Along with his wife, Ellen W. Potts, MBA, he co-authored A Pocket Guide for the Alzheimer’s Caregiver, which is recommended by the Alzheimer’s Association, the American Academy of Neurology and Maria Shriver.

Inspired by his father’s transformation from saw miller to watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics.

Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He practices neurology at the Tuscaloosa VA Medical Center.

Read Dr. Potts’ AlzAuthors post: https://alzauthors.com/2017/02/21/meet-daniel-c-potts-physician-author-and-dementia-advocate/

Listen to Dr. Potts podcast on Untangling Alzheimer’s and Dementia: https://alzauthors.com/podcast

Start reading “A Pocket Guide for the Alzheimer's Caregiver” with Ellen Potts now! https://amzn.to/3nP2IIB

Additional books by Dr. Potts:

“Finding Joy in Alzheimer’s: New Hope for Caregivers,”with Marie Marley, https://amzn.to/2KIAi4h

“Treasure for Alzheimer’s: Reflecting on experiences with the art of Lester E. Potts, Jr,” with Richard Morgan, Ph.D., https://amzn.to/3mBxjYr

“Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers,” https://amzn.to/2LVFySH

“The Unlatched Door: A Collection of Poetry,” https://amzn.to/37AZe6L

“A Heart That Knows Your Name: Poetry Inspired by Persons Living with Dementia and Care Partners,” https://amzn.to/3nDWRFB

“The Second Crossing: A Poetry Anthology,” https://amzn.to/3r8Ngc6

“At End of Day,” https://amzn.to/2KFznkX

“Verses of Recovery,” https://amzn.to/2LOtFh7

“Soul Fire: Celebrating life and creation through word and image,” https://amzn.to/3p862i2

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Dr. Potts

Blog:https://danielcpotts.wordpress.com/

Facebook: https://www.facebook.com/daniel.potts.92372

Twitter: https://twitter.com/DanielCPotts

LinkedIn: https://www.linkedin.com/in/danielcpotts/

Cognitive Dynamics:www.cognitivedynamics.org

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

AlzAuthors has again partnered with HFC, (Hilarity for Charity) to present a Summer Book Series for Alzheimer’s and dementia families and caregivers. Each month one of our authors meets with readers and caregivers online to discuss their book. The authors talk about their own dementia journeys and why they chose to write about them. They also answer questions from the attendees. It’s a wonderful way to learn more about dementia and caregiving.

Peter Berry kicked off the first in our series on June 8th. Peter’s book, “Slow Puncture: Living Well with Dementia,” was written by his friend, Deb Bunt. Peter and Deb both participated in the book club, and it is a lively discussion. Peter discussed the deep depression that engulfed him after his diagnosis and shared how he managed to not only climb out of it but learned how to live well with dementia, and to inspire others to do the same. He is an important voice in dementia world and one can learn a lot from him about positive living.

About Peter Berry

Diagnosed with early onset Alzheimer’s at age 50, Peter took an early retirement from his job working in the family’s timber business. After the devastating diagnosis, he became depressed but, being a ‘glass half full’ personality, battled through his depression and focused on his lifelong passion for cycling. He has used this passion to raise awareness of the condition, particularly in younger people.

Peter’s philosophy is to live well with dementia and to inspire others to do the same. He maintains an active lifestyle due to his love of cycling, which keeps him fit both below and above the eyebrows, he says.

Along with his friend Deb Bunt, Peter cycles nearly every day. Their travels throughout Suffolk, England have led them to have many serious heart-to-hearts about his disease, which Deb put together in Slow Puncture.

“It's a book about me,” Peter says, “but a book I have never read and never will read as my short-term memory means I have forgotten the previous sentence as soon as I have started a new one.”

Read Peter’s AlzAuthors Post: https://alzauthors.com/2020/12/29/early-onset-alzheimers-bunt-berry/

Listen to Peter’s AlzAuthors Podcast: https://alzauthors.com/podcast

Start reading Slow Puncture now! https://amzn.to/3tbDsis

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Peter and Deb

Website:

https://peterberrylwa.wixsite.com/peterberry/the-book

Facebook:https://m.facebook.com/DebBuntAuthor

Facebook:https://www.facebook.com/PeterBerryLivingWithAlzheimers/

Twitter:https://twitter.com/PeterBe1130

Instagram:https://www.instagram.com/peterberry8/

Join us on August 10th for the third and last session in the series with Loretta Woodward Veney, author of Being My Mom's Mom. Register here: https://zoom.us/meeting/register/tJwqfuCqrTsqH9V-vyV2F3ydmnLrY6BgRbzH

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

On June 15, 2021, 5 of our authors came together for our first Virtual Q&A called “Everything You’ve Always Wanted to Know About Living with Early Onset Dementia but Were Afraid to Ask.” We talked about their diagnoses, and they answered questions regarding their daily lives, how they cope with their condition, how they manage to keep a positive attitude, and so much more. You will learn a lot!

For a transcript, please email [email protected]. Let’s get started!

Our Panelists:

Michael Ellenbogenwas diagnosed with early onset Alzheimer’s at the age of 49, after experiencing symptoms for 10 years. This led to an early retirement from his career in information technology. Following his diagnosis, he has become an outspoken advocate for those with dementia and has written articles and blog posts in addition to his book,From the Corner Office to Alzheimer’s.He has appeared on podcasts and television and has testified before the United States Congress.

Gerda Saunderswas the Associate Director of and taught in the Gender Studies Programat the University ofUtah; she also taught gender and literature courses in theEnglish Department. At the age of 61, she was diagnosed with cerebral microvascular disease, a precursor to dementia. She retired a year later. She maintains an active lifestyle, writing and speaking about the disease in a variety of settings. She is the author ofMemory’s Last Breath: Field Notes on My Dementia,and blogs atLiving With My Dementia.

Wendy Mitchellstarted a blog,Which Me Am I Today?after being diagnosed with young-onset Alzheimer’s and vascular dementia in 2014.She was 58. Her blog eventually became a memoir,Somebody I Used to Know.Wendy remains active in the dementia community, participating in workshops and lectures across England. She has a very active Twitter presence, which she calls her lifeline.

Dr. Jennifer Bute, FRCGP worked in Africa as a doctor before working as a GP (Family Doctor) for 25 years and was involved in medical education. She was diagnosed with dementia ten years ago. She speaks at conferences and on radio and has been involved in television programs raising awareness and understanding of dementia. She passionately believes more can be done to improve both the present and the future for those living with the disease. Her bookDementia from the Inside: A Doctor’s Personal Journey of Hopeis her story and explains these principles. Her websiteGloriousOpportunity.orgincludes many videos where she discusses different aspects of the condition, and she also blogs on Facebook atGlorious Opportunity.

Peter Berryran the family’s timber business for decades before being diagnosed with early onset Alzheimer’s at age 50. He immediately stopped working and fell into a deep depression. After some time, he realized that he still had a life to live, overcame his depression, and now fills his days with cycling across the English countryside with his friends, and advocating for those with dementia in his community and on social media. To date he has raised more than £20,000 for dementia charities through cycling challenges. He tells his story inSlow Puncture: Living Well with Dementia, with Deb Bunt.

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort, and support on their own dementia journeys.

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.

Today’s guest is Australian Kate Swaffer, a humanitarian and activist for disability rights in dementia and aged care. She is the Chair, CEO and co-founder of Dementia Alliance International, a global advocacy and support group for people living with dementia. Kate is also living with younger onset dementia, diagnosed in 2008 at age 49.

She has won many awards for her work, including the 2018 Australian 100 Women of Influence Global Leader, and the 2017 South Australia Australian of The Year. Kate is an elected board member of Alzheimer’s Disease International, and a current PhD candidate at the University of South Australia. Her first dementia book, What the Hell Happened to My Brain? Living Beyond Dementia, and her second book, Diagnosed with Alzheimer’s or another dementia, co-authored with Associate Professor Lee-Fay Low, were released in 2016. She has also written and published a book of poetry, Love Life Loss - A Roller Coaster of Poetry Volume 2: Days with Dementia.

Since 2010, Kate has given many keynote presentations on dementia, human rights, disAbility, discrimination, stigma, the lived experience of dementia, dementia-enabling design principles, language, Prescribed Disengagement®, Information Technology for people with dementia, dementia policy, and loss and grief.

In this episode we discuss how she managed to complete two master’s degrees and part of a PhD post diagnosis, her life as an “accidental activist,” and how to break down the wall of silence that surrounds a dementia diagnosis.

Read Kate’s AlzAuthors Post: https://alzauthors.com/2016/07/19/meet-kate-swaffer-author-of-what-the-hell-happened-to-my-brain/

Start reading What the Hell Happened to My Brain? now! https://amzn.to/3xuIqZG

Start reading Diagnosed with Alzheimer’s or another dementia now! https://amzn.to/2VtmQ9K

Note: We are an Amazon Associate and may receive a small commission from book sales.

Connect with Kate Swaffer

Website: https://kateswaffer.com/

Dementia Alliance: https://www.dementiaallianceinternational.org/

Blog: https://kateswaffer.com/daily-blog/

Facebook: https://www.facebook.com/kate.swaffer

Instagram: https://www.instagram.com/kateswaffer/

Twitter: https://twitter.com/KateSwaffer

LinkedIn: https://www.linkedin.com/in/kate-swaffer-502a5b13/

YouTube: https://www.youtube.com/channel/UCZZQitZb0pttEpGxNLwldjg

Each season our podcast brings you six of our authors sharing their dementia journeys. Please subscribe so you don’t miss a word. If our authors’ stories move you please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort and support on their own dementia journeys

AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ .

Thank you for listening.