Understanding Dementia Together

We had the opportunity to learn from Deborah Seelhoff, a Certified Dementia Practitioner, who shared helpful insights on understanding dementia and building supportive, compassionate connections with those living with it. Her presentation focused on replacing common misconceptions with practical knowledge that can improve caregiving and relationships.

One of the most important clarifications is that dementia is not simply memory loss, nor is it a normal part of aging or something that affects only older adults. Instead, dementia is an umbrella term describing a collection of symptoms caused by diseases that affect the brain. It involves both chemical and structural changes, making it more accurate to think of dementia as a form of brain failure, not just a memory problem. Because different areas of the brain are affected, dementia presents differently for each individual.

Diagnosis can be complex. There is no single test that determines dementia or its specific type. Doctors rely on multiple tools, including medical history, physical exams, lab tests, cognitive and neurological evaluations, brain scans, psychiatric assessments, genetic testing, and sometimes spinal fluid tests. However, families and caregivers often serve as the “first observers,” noticing early changes in thinking, mood, daily routines, and interests.

Dementia also affects how the brain processes sensory information and communication. Vision becomes especially important, as individuals often rely more on what they see than what they hear. While many people with dementia can still hear sounds, they may struggle to interpret or organize words, especially when they sound similar. This can lead to misunderstandings rooted not in hearing loss but in cognitive processing challenges.

Changes in the prefrontal cortex can impact decision-making, problem-solving, and social awareness. Individuals may feel overwhelmed by simple choices, such as what to wear or eat. They may also have difficulty seeing situations from another person’s perspective or understanding complex social cues. For caregivers, remembering this can help foster patience and empathy.

A powerful metaphor shared during the presentation was the “doughnut” analogy. The hole represents lost abilities, while the frosting symbolizes the meaningful strengths, personality, and emotional capacities that remain. Dementia is not static—abilities can fluctuate from day to day, and individuals continue to have moments of clarity, joy, and connection.

Language also matters. Rather than labeling individuals as “patients” or “residents,” the preferred term is People Living with Dementia (PLwD), emphasizing dignity and identity beyond the diagnosis. Care is most effective when it focuses on relationships rather than correction, recognizing that individuals are doing their best with the abilities they have.

Overall, the presentation emphasized that understanding dementia requires perspective, patience, and compassion. By imagining the challenges of reduced sensory clarity, language struggles, and cognitive overload, caregivers can respond more effectively and kindly. The approach shared reflects principles inspired by Teepa Snow and the Positive Approach to Care philosophy, reminding us that meaningful support is rooted in empathy, respect, and human connection.