When someone is diagnosed with Alzheimer’s disease or dementia, it reshapes the lives of their entire family network. For caregivers in the LGBTQ+ community, this already tough journey can involve specific obstacles and marginalization that their heterosexual and cisgender counterparts rarely encounter.
An estimated 350,000 LGBTQ+ Americans are affected by Alzheimer’s and related dementias. Studies suggest they are 29% more likely to experience memory loss and confusion compared to non-LGBTQ+ individuals. LGBTQ+ adults are statistically more likely to be providing care for their chosen family alongside biological relatives.
Yet despite the prevalence, the distinct challenges faced by LGBTQ+ dementia caregivers have been largely overlooked and understudied.
This glaring gap in awareness and understanding can leave these caregivers feeling profoundly alone, misunderstood, and inadequately supported.
Our promise is to love and care for your family as we do our own.
Shining a light through shared stories
On May 22nd, Kensington Senior Living hosted a crucial virtual panel: “LGBTQ Caregiver Stories with Alz Authors.”
Our goal is to elevate these seldom-discussed experiences into the spotlight. The event featured acclaimed authors who have walked this path themselves and provided candid insights and validation for LGBTQ+ caregivers.
The panelists drew from diverse personal journeys in caring for loved ones with dementia:
- Laura Davis, author of the caregiving memoir “The Burning Light of Two Stars,” about caring for her mother
- Christopher MacLellan, whose story of caring for his partner Richard was captured in the Pulitzer-nominated piece “In Sickness and In Health”
- Vincent Zappacosta, an advocate who has shared his experiences caring for his mother with dementia through his book “Dementia-Mama-Drama”
- Marianne Sciucco, author of the Alzheimer’s love story “Blue Hydrangeas” and founder of the online community AlzAuthors.
- Christy Byrne Yates, who documented her journey as a “sandwich generation” caregiver in “Building a Legacy of Love”
Throughout the panel, these experts delved into an array of distinctive issues that can make the dementia journey exponentially more complicated for LGBTQ+ families.
Complex family dynamics
For many LGBTQ+ people, the traditional concept of a spouse or adult child serving as the “family caregiver” may not align with their lived experiences.
Strained or estranged relationships with biological relatives and a deeper reliance on close friends or “chosen families” can create uncertainty about legal standing, care decisions, and family hostilities.
Some LGBTQ+ caregivers may face outright discrimination, rejection, or hostility from biological family members disapproving of their identity.
This can create immense personal trauma as well as barriers to being involved or acknowledged as the appropriate care provider.
Stigma and substandard care
LGBTQ+ seniors and caregivers continue facing disproportionate prejudice, insensitivity, and substandard care in many healthcare settings.
Substandard care can manifest as:
- Inappropriate comments
- A refusal to recognize the LGBTQ+ individual’s role as a caregiver
- Questioning the caregiver’s legal rights and decision-making authority
- General lack of inclusive, respectful treatment
In some cases, the stigma is overt and shocking—such as being barred from a loved one’s hospital room or denied critical medical information.
More commonly, it stems from ingrained cultural biases that gradually erode care quality and the overall patient and caregiver experience.
Legal roadblocks
The patchwork of state laws and lack of federal protections means LGBTQ+ dementia caregivers often face uncertainty around their legal rights, authority over care decisions, visitation policies, and whether their relationship will be recognized and respected.
Even if they have taken all possible legal steps— such as drafting a will, advanced directives, or medical powers of attorney—their role can still be challenged or outright ignored by discriminatory family members or care providers.
The constant threat of having their rights as the caregiver usurped can take an immense emotional and financial toll.
Social isolation and economic marginalization
Many LGBTQ+ individuals have experienced prejudice, rejection, or ostracization from community support systems that caregivers often rely on, such as religious groups, social clubs, or workplace resources.
This lack of an emotional reinforcement system can be truly devastating through the grueling dementia experience.
A lifetime of employment discrimination means LGBTQ+ caregivers are more likely to have lower lifetime earnings and savings.
When combined with the exorbitant costs of dementia care and potential income loss as a caregiver, LGBTQ+ community members face several financial obstacles.
Disproportionate health impacts
The sustained discrimination, social marginalization, and trauma involved in LGBTQ+ dementia caregiving appear to be manifesting as observable mental and physical health disparities.
Research suggests LGBTQ+ dementia caregivers have worse overall self-rated health, higher rates of disability, and elevated depressive symptoms compared to non-LGBTQ+ caregivers providing the same level of care.
Studies indicate that chronic stress and adversities may put LGBTQ+ caregivers at higher risk of developing conditions like cardiovascular disease, diabetes, and compromised immune function.
This not only impacts their personal well-being but their quality of caregiving for their loved ones as well.
The urgent need to support LGBTQ+ dementia caregivers
While LGBTQ+ individuals have made hard-fought strides toward equality and inclusion, the dementia sphere has yet to catch up in fully recognizing and accommodating their caregiving realities.
Too often, LGBTQ+ caregivers feel unseen and disrespected, lacking access to resources that can lighten their heavy load.
Our event represents a critical step in unmasking these systemic challenges and equipping the community with tools to advocate for change.
Elevating authentic stories from diverse experiences can inspire care providers, policymakers, and society to prioritize LGBTQ+ inclusivity in dementia care.
Each caregiver’s journey is unique and shapes them in profound ways. As our panel reinforced, those who are LGBTQ+ deserve to have their identities not only recognized—but embraced and supported—every step of the way.
Build a dementia care movement for LGBTQ+ caregivers
At Kensington Senior Living, we believe every caregiver deserves to have their identity embraced with dignity, understanding, and equitable support—regardless of sexual orientation or gender identity.
Their stories and struggles cannot be overlooked.
Let’s come together to uphold the humanity and self-determination of every person bravely caring for a loved one with dementia.