Leona’s Legacy: Understanding the Connection Between Chronic Pain and Dementia
For all the day-to-day challenges chronic pain brings, there are also potential long-term, even lifelong, health complications that may arise. One of these may be an increased risk of dementia.
Research suggests that people living with long-term chronic pain may face a higher risk of developing Alzheimer’s disease and other forms of dementia. Researchers believe several factors may contribute to this connection, including persistent inflammation, changes in brain structure associated with chronic pain, long-term use of certain medications, the effects of significant childhood trauma and chronic stress.
Leona’s Legacy was created in honor of founder Cynthia Toussaint’s mother, Leona, to shine a light on this often-overlooked connection and empower people living with chronic pain to support their brain health. Through education, resources, personal stories, and advocacy, Leona’s Legacy seeks to inspire hope while helping individuals and families navigate the challenges that can accompany both chronic pain and dementia.
Dementia can leave people especially vulnerable—not only to the devastating effects of the disease itself, but also to financial exploitation, neglect, and other forms of abuse. According to the World Health Organization, approximately 1 in 6 people age 60 and older worldwide experience some form of abuse. Leona’s Legacy explores these vulnerabilities and advocates for stronger protections for those living with dementia, while also examining how chronic pain, trauma, stress, and family dynamics may influence health and well-being.
Throughout this site, you’ll find resources to better understand the connection between chronic pain and dementia, along with information and tools to support brain health, reduce vulnerability, and protect those living with cognitive decline. You’ll also discover personal stories that explore the intersection of chronic pain, trauma, dementia, and resilience.
You’ll learn about founder Cynthia Toussaint’s forthcoming memoir, a deeply personal tribute to her mother and an exploration of the lifelong experiences that shaped their family’s journey with chronic illness and Alzheimer’s disease. You’ll also learn about For Grace’s California legislative efforts to strengthen protections for people living with dementia and help prevent financial elder abuse.
Welcome to Leona’s Legacy. Inspired by the loving yet fiercely protective woman who gave this project its name, we hope you’ll find a safe harbor of hope, wellness, and protection.
Pain-Dementia Connection Resources
Pub Med Central: Association Between Chronic Pain and Dementia
Alzheimers.gov: Dementia is Linked to Increased Pain Years Before Diagnosis
JAMA Network: Association Between Persistent Pain and Memory Decline and Dementia
Pub Med Central: The Potential Contributions of Chronic Pain to Subsequent Cognitive Decline
Nature.com: Chronic Pain and the Risk of Cognitive Impairment
Mom was born on a Minnesota dairy farm – and always wore her midwestern values …
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Dementia Resources
Alzheimer’s Association: What Is Dementia?
US Center for Disease Control: About Dementia
National Institute on Aging: What Is Dementia?
Alzheimers.gov: What is Dementia?
Posing with Mom in the backyard – my hero …
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Brain Health Resources
Healthy Women: Building Up Your Brain
Alzheimer’s Association: Brain Health
World Health Organization: Brain Health
Healing Works Foundation: Healthy Aging Guide
Mom visiting me backstage at the Reno Hilton – I always sat on her lap …
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Elder Care & Abuse Resources
National Center for Elder Abuse
World Health Organization: Abuse of Older People
US Department of Justice: Elder Justice Initiative
National Institute on Aging: Elder Abuse
National Council on Aging: Get the Facts on Elder Abuse
Leaning on Mom due to my CRPS pain at a girlfriend’s wedding …
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Chronic Pain-Dementia Lived Experience Stories
Heather Grace
Heather battles pain and the risk of developing dementia with hope and hard work …
Tom Norris
The voices in Tom’s elder pain support group have lost sharpness and focus over the years …
Kai Ocean
Kai’s “ounce of prevention” is lowering her chance of developing dementia …
Kathleen Sutherland
Concerned about dementia, Kathleen advises what we can all do to prepare …
Brooke Whipple-Kucera
Brooke dances her way through a history of family pain and dementia …
Share your chronic pain-dementia (with or without elder abuse) story
At For Grace’s 2011 Women In Pain Conference – three years before Mom’s Alzheimer’s diagnosis when family members were beginning to exert control over her …
A brief moment with Mom during the eight years family members kept her separated from me “Mom, your love and goodness will forever push me forward … “
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Awareness and Education Videos
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Learn More About Leona’s Legacy Book Project
Learn More About Leona’s Legacy California Elder Protection Legislation
A Message from Cynthia…
Leona’s Legacy, named in honor of my beloved mother, holds my heart. It is the most intimate project I have ever undertaken. It was born from my love for this extraordinary woman and from the heartbreak of witnessing the devastating impact of Alzheimer’s disease and the abuse my mother experienced while living with dementia.
I have always felt deeply loved because of Mom’s goodness. She gave me an unwavering sense of self and showed me what compassion, courage, and unconditional love look like. I know that so much of what is good in me came from her. She was my best friend, my angel, my north star. My everything.
Mom was also my protector. Until she could no longer be.
A Song for Mom
When I learned that Mom had little time left, I was at her bedside in the hospital before other family members arrived. She was suffering, and the first words she spoke to me were, “Cynthia, can you get me out of this?”
Feeling helpless, I knew I couldn’t. So I did what came naturally. I leaned over her bed and sang to her.
Mercifully, the song brought her comfort—a reminder that she was loved and that, somehow, everything would be alright. When I finished, she opened her eyes and tenderly said, “That’s pretty.”
In that moment, I learned something profound: with Alzheimer’s, music and love are among the last things to go.
Mom’s Drawing
I was 19 when Mom asked me to pose for this pen-and-ink drawing while we were visiting my Grandma Haering in Minnesota. Her home was filled with wonderful treasures, including the conch shell featured in the artwork.
It was such a happy time for both Mom and me. She had just finished her first leading role in a musical, and I had met the love of my life—one of her fellow cast members.
Mom must have seen a sparkle in my eye that she wanted to capture. During the precious two hours I sat for her, we did what we always did best: we were simply girls together.
Twenty-five years later, when I earned my dance degree from UC Irvine—22 years later than planned and in a wheelchair—Mom overwhelmed me by gifting me this, her favorite drawing.
Mom’s Logo
Shortly after losing my mom, hawks began appearing in my life with deep meaning—almost magical significance.
I’ve come to understand them as symbols of the fierce, protective, and intuitive side of motherhood: the kind of love that guides through instinct and heart rather than logic. To me, they are the perfect symbol for Mom. Her love and strength never wavered, not once.
Leona’s Legacy Advisory Committee
Dr. Mary Driscoll
Heather Grace, MBA
Dr. Morgan Grether
Diane Hoffmann, J.D.
Carla Levenson
Dr. Steven Richeimer