The Long Haul: The Impact of Long-Term Dementia Caregiving

This episode is our contribution to Podcasthon, a global collaboration of podcasters to raise awareness of their favorite charities. Our favorite charity is us. We are a 501 (c) (3) organization. Please be generous. Donate at AlzAuthors.com.

In this deeply personal and informative episode, hosts Marianne and Christy are joined by panelists Jean Lee, Ann Campanella, Loretta Woodward Veney, and David Iverson, all caregivers for ten or more years, as they explore the five pillars of caregiving – emotional toll, physical strain, financial difficulties, social isolation, and coping strategies.

Key Themes & Takeaways:

Emotional Toll: Caregivers shared moving personal stories of grief, guilt, and anger while navigating their loved ones’ dementia journeys. There is strength in allowing yourself to grieve, as highlighted by Ann Campanella, who stated, “Grieving clears the way to bring in joy and beauty.”

Physical Strain: From exhaustion to disruption of sleep cycles, the taxing demands of caregiving impact physical health drastically. David emphasized practicing self-care through exercise and staying physically active as a necessary coping mechanism.

Financial Difficulties: A significant challenge highlighted was the cost of care, with inputs from Jean, Loretta, and Dave emphasizing the overwhelming need for better elder care policies. Loretta noted how caregivers should proactively explore local programs like Medicaid waiver lists early on for financial support.

Social Isolation: Many caregivers expressed feeling isolated, especially given the stigma surrounding dementia diagnoses. Loretta found joy in keeping her mother socially active, even organizing creative activities like Lego building to keep her mother engaged.

Strategies for Coping: Incorporating joy into daily routines was a recurring theme, especially for Loretta, who promised her mom “a little bit of joy every day.” The authors shared reminders to stay connected with loved ones and leverage support groups for affirming connections and shared experiences.

After the Podcast

Learn more about the panelists

Purchase their books

• Alzheimer’s Daughter
• Being My Mom’s Mom
• Motherhood: Lost and Found
• Winter Stars: An elderly mother, an aging son, and life's final journey 

Note: we are an Amazon Associate and may receive a small commission on book sales at no additional cost to you or the authors. 

Learn more about the Moderators

Marianne Sciucco

Christy Byrne Yates

About the Podcast

AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others.

Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. 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 on their own dementia journeys.

We are 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 donate here.

Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.

Thanks for listening.

We are a Whole Care Network Featured Podcast

Proud to be on The Health Podcast Network

Find us on The World Podcast Network and babyboomer.org

Want to be on the podcast? Here’s what you need to know

We’ve got merch! Shop our Store