Long term care reform: Delawareans deserve better

Incidences of life-threatening abuse, neglect and harm to residents in our state’s memory care facilities are problematic. In the past year alone, I have heard directly from several Delawareans whose loved ones have suffered emotional and physical harm while residing in memory care facilities entrusted with their care. 

When the family of one Newark resident made the difficult decision to move her into inpatient memory care, a small facility close to home was chosen to ease the transition and to, ostensibly, provide more hands-on attention. Tragically, this family’s worst fears were realized when their mother’s body was discovered after having gone missing for some time. This family deserved better. 

A Wilmington man experienced utter heartbreak as his wife, who was living with Alzheimer’s, languished in a facility where her personal care and dignity had been compromised. Despite residing in a facility that was designed to provide her care—even the most basic level of care that is food and water — his wife was often left without, unless he was present to feed her each day. This couple — this woman — deserved better.

One Middletown woman expressed anguish after witnessing her mother in tears because of abdominal pain after she had fallen out of a wheelchair at the memory care facility where she resided. Despite the administration insisting her mother was fine, after many days and a false X-ray report, a trip to the emergency room revealed she’d fractured two vertebrae which control the abdominal muscles. This mother, and her daughter, deserved better. 

These horrific experiences — and the countless others like them that have not been reported in the news—are simply unacceptable. And the fact of the matter is, through policy change and commitment from our local legislators, these circumstances are avoidable. 

Our Delaware legislators must act quickly to pass and fund the package of legislation recently proposed by state Sen. Spiros Mantzavinos and Rep. Kendra Johnson. Importantly, this legislation is designed to address the critical need for reform in facilities offering memory care services. The package — which includes Senate Bills 150,151 and 215 and House Bills 217 and 300 — aims to help facilities recover from loss of labor through a career-based scholarship program; provides enhanced transparency via third-party accreditation and annual in-person inspections; and gives the state more clout to correct extreme cases of life-threatening abuse through increased civil penalties. 

Delawareans deserve to have better laws in place to protect them and their loved ones. Passage and funding of these bills will better ensure a system that protects our most vulnerable citizens. 

According to the Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figuresreport, there are currently 22,300 Delaware residents aged 65 and older who are living with Alzheimer’s disease. At age 80, approximately 75 percent of people with Alzheimer’s live in a nursing home. Each one deserves to receive care with dignity, and their families deserve to not live in fear that their loved one might be neglected, abused or otherwise harmed. 

On behalf of all Delaware families who are navigating a dementia diagnosis — and who depend on memory care facilities to provide much-needed specialty care — I implore our state legislators to act, and to act quickly. 

Sean Dwyer is director of Delaware State Government Affairs for the Alzheimer’s Association Delaware Valley Chapter.