Doctors don’t know everything

By Mara Botonis on December 15, 2014

Doctors don’t know everything

Waiting rooms in doctor’s offices across North America are filled with family caregivers who ran a marathon to get their loved one to the appointment. The cleaning, dressing, feeding; the coaxing into the car; making it on time, or at least not late enough that the office staff cancelled the appointment.

They anxiously want to discuss changes in their loved ones’ unique dementia symptoms.

They wrote down or tried to memorize their questions, the new behaviors and health issues they are observing, and the names of the latest treatment options and medication they want an opinion on.

Finally they’re called in: “The doctor will see you now.”

They’ve got about 13 to 16 minutes on average. They take a deep breath, and begin: “Dad seems to be getting worse since we changed his medication.” “My wife’s dementia symptoms seem to have improved since her cold went away.” “My Mom hasn’t been the same since she went under anesthesia last month.”


Sometimes it’s hard to find the right words to help nurses and physicians understand what we are seeing.

Sometimes the message is lost, wrapped in feelings instead of actionable facts.

For some of us, the appointment with our loved one’s physician is over before we got to draw the maximum benefit from the interaction.

Many health care providers and family caregivers express frustration about the effectiveness of physician visits for persons with Alzheimer’s or dementia.

Commonly cited complaints from the family’s perspective include “too little time with the doctor,” “the MD doesn’t understand what’s happening at home” and “nothing we do seems to make any difference.”

Doctors want and need those office visits to provide them with the most specific information to help them adjust treatment and care in the way that best supports each individual patient.

You May Be the Only (and Best) WitnessMany caregivers have heard the phrase, “If you’ve met one person with dementia, you’ve met one person.” All it takes is a short conversation with a medical provider to find out that they agree.

One of the primary barriers to improving both the office visit experience and the adjustment of care plans is the difficulty in objectively measuring and communicating the individual symptoms each person with dementia experiences.

When fighting a progressive, ever-changing disease, the importance of communicating person-specific symptoms is magnified.

Reversible, dementia-exacerbating factors such as lack of sleep, urinary tract infection (UTI), malnutrition, dehydration, or reaction to medications all have the potential to be successfully managed if the medical team knows how and when they are happening.

Family caregivers are thrust into the position of being both the only (and best) witness to the way the disease process is progressing in a loved one.

They have the added advantage of knowing when even subtle changes are occurring. These clues make a difference in altering treatment and care in a way that can improve, and perhaps even prolong a better quality of life.

But it can be difficult for family caregivers to collect and communicate the clues to their doctors.

The Person-Centered Signs and Symptoms of Dementia Tracker” is a communication tool designed to better track individual symptoms and facilitates more meaningful conversations around tailored care and treatment options.

The Tracker lists over 50 of the most commonly occurring dementia symptoms grouped into categories such as:

Orientation, Communication, Bathing/Grooming, Nutrition/Hydration, Behavior, Judgment, Engagement, Toileting, Physical Changes, and Wandering/Safety.

The family caregiver simply indicates by check mark if a particular symptom is occurring in their loved one “Daily,” “Weekly” “Monthly” or “Never.”

Caregivers are encouraged to complete and date the checklist every 30 days or upon significant change in condition.

This one-page checklist offers quick completion on the part of the caregiver and fast review by the health care provider.

Click on the link below to download your FREE copy of the Person-Centered Symptom Tracker, and have a much more satisfying medical visit, with better results.

Click here:


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By Mara Botonis| December 15, 2014
Categories:  Care Giving|Dementia

About the Author

Mara Botonis

Mara Botonis

Mara Botonis has spent time in hundreds of communities with thousands of families while working in over 30 states during her 29-year career in healthcare in the United States. She has consulted for clients and has direct experience in all areas of the seniors housing business: Continuing Care Retirement Campus (CCRC), Independent/ Retirement Living (IL), Assisted Living (AL), Memory Care (MC), Skilled Nursing (SNF), Home Health Care (HH), Hospice and Hospital/Acute Care settings.

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