Becoming a Voice for Those Lost to Dementia

Navigating the complexities of dementia caregiving requires not only medical knowledge but also a deep understanding of the individual and their evolving needs. CherylAnn Haley, a private aide and certified dementia educator from Tampa, Florida, has grow a dedicated advocate for those living with dementia and their families. Her personal journey caring for her mother, Sandy, who has vascular dementia, has transformed her into a powerful voice for improved dementia care and a translator between caregivers and those they support.

Early Signs and the Progression of Dementia

Haley recalls that her mother’s dementia began subtly around the age of 70, initially manifesting as forgetfulness and getting lost while driving. As a real estate agent, Sandy relied on her ability to navigate, and these early incidents—requiring calls to the office for directions—were the first indications of a deeper issue. Despite these challenges, Sandy maintained a passion for her operate, finding a sense of accomplishment in successful transactions. A peculiar habit, ripping up paperwork after filing important documents, emerged as a form of catharsis for her.

Facing Increasing Challenges

Sandy’s condition accelerated, leading to increasingly concerning episodes. In 2016, she unexpectedly appeared at Haley’s apartment, two hours away, without any belongings, stating, “It doesn’t matter. We can buy novel ones.” These instances of getting lost and wandering escalated, culminating in a five-hour disappearance in 2020. Recognizing the growing risks, Haley made the difficult decision to move her mother into assisted living, initially presenting it as a stay in a “nice hotel.” Further complications led to a transition to memory care after Sandy was found outside the assisted living facility at 2:30 a.m., and eventually to hospice care.

The Role of a “Dementia Translator”

Now serving as her mother’s private aide, Haley emphasizes the importance of understanding individual behaviors and communicating those needs to caregivers. She often finds herself explaining seemingly unusual habits, like the paper-ripping, as coping mechanisms that provide comfort. Haley has embraced the role of a “dementia translator,” bridging the gap between her mother’s internal experience and the perceptions of others. She stresses that no one knows a loved one better than their caregiver and encourages sharing insights with healthcare professionals. For example, she advises that when asked a yes or no question, individuals with dementia may default to “no” simply because it’s the easier response, requiring caregivers to probe deeper.

Finding Support and Advocating for Change

Haley draws strength and support from the Dementia Society of America, a resource for both individuals with dementia and their caregivers. She highlights the value of connecting with others who understand the challenges of dementia care. Haley is also actively involved in advocating for better dementia care, including supporting legislation like the ASAP Act, which aims to create a pathway for Medicare coverage of FDA-approved dementia blood tests, as reported by Sandy’s Daughter on Facebook and Business Insider.

CherylAnn Haley’s Work

CherylAnn Haley lives in Tampa, Florida, where she advocates for better dementia care and education. She named her coaching company Sandy’s Daughter, in honor of her mother. She also hosted an event called “Let’s Talk Dementia and the Five Senses” at Promise Pointe Senior Living in Tampa, FL on September 9, 2025, as noted on Eventbrite.

Haley’s story, as shared in Crafting Meaningful Moments, is a testament to the resilience of the human spirit and the power of love in the face of a devastating illness. Her work underscores the critical necessitate for compassionate care, effective communication, and ongoing advocacy for those living with dementia and their families.