By Marianne Sciucco, New York, US
Each dementia journey is unique in its own way, but lesbian, gay, bisexual, transgender, and queer (LGBTQ+) caregivers may face their own set of distinctive issues:
- Stigma against LGBTQ+ people layered on stigma against Alzheimer’s and dementia
- Difficulty finding inclusive and welcoming health care providers
- Lack of family members to call upon for assistance
- Higher rates of poverty and social isolation
- Bias that prevents taking part in medical decision making for a partner
- Hostile remarks and behavior from healthcare personnel
- Health insurance issues
- Employers who are reluctant or unwilling to give time off to care for a same-sex partner
- Entrusting the care of a loved one to strangers, such as home care, hospital, memory care, or long term care personnel due to implied or explicit bias
Please join us for an AlzAuthors Live! virtual panel discussion on LGBTQ+ Caregiver Concerns on Wednesday, May 22 at 6 pm EST. We’ll talk about family of origin vs. family of choice, stigma and discrimination, legal issues, and location location location! because where you live will dictate what kind of experience you’re going to have. We’ll also touch on current events and the threats to LGBTQ+ rights. There’s a lot to cover in an hour.
The program will be recorded for future viewing on our YouTube channel and published on our podcast.
Presented along with our partners at Kensington Senior Living.
This event is free but donations are welcome. If you would like to support our mission to bring quality resources to dementia caregivers please visit our donation page. We are a 501 (c) (3) organization.
Statistics
Around 8% of the estimated 50 million-plus caregivers of adults or children with special needs in the U.S. identify as LGBTQ+, with many caring for someone living with dementia. (The Conversation) That person may also be LGBTQ+.
According to the Alzheimer’s Foundation of America, approximately 350,000 LGBTQ+ Americans live with dementia, and are 29% more likely to report memory loss and confusion than their straight cisgender counterparts.
An AARP report showed LGBTQ+ individuals have a rich history of caring for both biological and chosen family. Compared to their non-LGBTQ+ peers, LGBTQ+ people are 1.2 times more likely to be primary caregivers and 3.5 times more likely to provide care for friends and chosen family.
Meet the Panelists
Laura Davis is the author of seven nonfiction books, including The Burning Light of Two Stars, which tells the story of her caregiving journey with a mother who betrayed her in the past. Her groundbreaking books have been translated into eleven languages and sold more than 1.8 million copies. In addition to writing books that inspire and change people’s lives, the work of Laura’s heart is to teach. For more than twenty years, at locations around the world, she’s helped her students find their voices, tell their stories, and hone their craft as writers. Learn more about Laura and The Writer’s Journey here.
Christopher MacLellan is the creative genius behind The Whole Care Network, a multimedia platform that provides a variety of resources for caregivers: podcasts, WCN University, and WCN streaming radio. The story of Chris and his partner, Richard Schiffer, was chronicled in a 2015 Pulitzer Prize nominated story “In Sickness and In Health: A Couple’s Final Journey” about their journey of caregiving. The story told of the challenges that LGBTQ+ partners have in dealing with the medical and legal system, but also told of the love and joy they experienced in Richard’s last years. Out of this experience, Chris has written a powerful and compelling book, What’s the Deal with Caregiving?, that informs caregivers about how to deal with the challenges they will encounter, regardless of sexual orientation, family situation, or age. He’s currently working on a film based on his caregiving journey with Richard, My Green Folder.
Vincent Zappacosta has a background in graphic design, theatre and yoga. His book Dementia-Mama-Drama is about the daily doses of dementia with his mother and how he and his husband dealt with it through humor and music. It focuses on the positive rather than the negative in caregiving. He is a strong advocate for dementia and Alzheimer’s spreading his positive message through international podcasts, interviews and social media. His writings have been published by several leading Alzheimer’s organizations. Vincent and his husband Douglass Christensen premiered their play “Some Of These Daze” about their caregiving experiences at The Fringe Festival. Currently they’re working on a treatment for a series based on “Dementia-Mama-Drama”.
Douglass Christensen comes from the world of theatre and dance. He traveled performing internationally and loved experiencing different cultures. After moving to New York he worked in publishing and eventually met Vincent Zappacosta. Fast forward many years later, they’re still together and continue to make each other laugh. His role as co-caregiver for Vincent’s mother added another level to their relationship. Their journey is brought to life in the book Dementia-Mama-Drama. They continue to participate in podcasts and interviews supporting caregivers and Alzheimer’s by sharing their experience.Meet the Moderators
Marianne Sciucco is an author, registered nurse, and dementia daughter. She’s a founder and manager at AlzAuthors.com and the author of Blue Hydrangeas, an Alzheimer’s love story. She’s also a podcast host at Untangling Alzheimer’s and Dementia, an AlzAuthors Podcast.
Christy Byrne Yates is the author of Building a Legacy of Love: Thriving in the Sandwich Generation, written from her experience caring for two parents at the same time while raising children. She is a Licensed Educational Psychologist (LEP), an author, speaker, and coach. As a licensed mental health professional, Christy offers insight into how the challenges of caregiving while raising children not only impacts the caregiver but also the children in the home. She offers evidence-based, real-life, and realistic strategies that can be adapted to fit most families’ needs. She’s also a podcast host at Untangling Alzheimer’s and Dementia, an AlzAuthors Podcast.
Resources
Special Concerns of LGBTQ+ Caregivers
Supporting the LGBTQ+ Community in Dementia Care
Alzheimer’s Association: LGBT Caregiver Concerns
LGBTQ+ Caregivers: Challenges, Policy Needs, and Opportunities
