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Marianne Sciucco noticed her stepfather sleeping more, neglecting home chores and repeating stories. Once tidy and well-groomed, he grew disheveled and increasingly irritable, but family members dismissed it as just his personality. Rather than shrugging it off, Sciucco found that her nurse’s intuition was telling her something was seriously wrong.
Sciucco, a founder of AlzAuthors, a global community for authors who write about Alzheimer’s disease and dementia, sensed these behavior changes were more than mood swings — they were red flags. During visits to the home on Massachusetts’ Cape Cod, she saw how the house had fallen into disarray. Despite resistance from both her mom and her stepfather’s longtime physician, she persisted — documenting concerns, accompanying them to medical appointments and ultimately finding a new doctor who recognized the cognitive decline.
A comprehensive evaluation confirmed what Sciucco had suspected: Her stepfather had dementia, compounded by a brain injury at birth. The diagnosis was devastating, but her advocacy ensured he received proper care and protected her aging mother from being overwhelmed.
Reflecting on that time, Sciucco says, “As a nurse and a family member, I knew I couldn’t ignore the signs. When someone you love starts acting unlike themselves, you owe it to them to find out what’s really going on.”
Catching subtle health clues
Older adults frequently face significant delays in receiving diagnoses for chronic diseases, a problem that can profoundly affect treatment outcomes and quality of life. For conditions such as dementia, Parkinson’s disease, stroke and type 2 diabetes, a timely diagnosis is especially critical. It not only allows patients to access appropriate care and interventions that help maintain independence and quality of life but also supports families in planning and coping with the disease.
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Missed or delayed diagnoses can exacerbate disability, reduce the effectiveness of interventions and increase both caregiver burden and health care costs. Addressing these barriers through education, proactive screening and improved access to care is essential to reduce diagnostic delays and improve outcomes for older adults.
“The earlier you identify the signs, the earlier you can get a diagnosis, start treatment and get on a good course of care and therapy. It really behooves caregivers and patients to act as soon as possible,” says Dr. Caroline Tanner, vice chair for clinical research in the Department of Neurology at the UCSF Weill Institute for Neurosciences in San Francisco.
“Caregivers play such an important role in noticing early signs and getting loved ones evaluated. They often see subtle changes that patients themselves may not recognize,” Tanner says.
When changes signal something more
For Tracy Cram Perkins, the signs were there long before her father’s diagnosis — she just didn’t know what she was seeing. After caring for her mother, who developed dementia following cancer surgery, Perkins began to notice similar changes in her father: repeated stories, unpaid bills, flashes of uncharacteristic anger and unexplained dents on his car.
At first, she chalked it up to grief after her mother’s death. But over time the pattern was impossible to ignore.
Her father’s confusion deepened, and one day, he slipped into a diabetic coma— the crisis that finally led to a diagnosis of moderate Alzheimer’s disease. In retrospect, Perkins realized that the warning signs had been present for years. “I thought he was just tired or lonely,” she says. “Now I know those were the first signs of dementia.”
What followed was another painful discovery: In the care facility where her father lived, he was prescribed 38 medications — many of them conflicting, some making his diabetes and hallucinations worse. Once his drug regimen was corrected, his alertness and personality returned, at least for a time.
The experience turned Perkins into an advocate for early recognition and medication oversight. Her book, Dementia Home Care: How to Prepare Before, During, and After, helps families recognize subtle behavioral and physical changes before a crisis occurs.
Her message to other caregivers: “Spend time with your loved ones, pay attention to minor changes and trust your instincts. If something feels off, it probably is.”
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