November 30, 2023

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Be an advocate for your loved one with their healthcare provider

Think about your last doctor’s appointment. At any point during the visit, did you find yourself intimidated? Did the doctor order tests? Did you understand what they were and why they were ordered? Once the results were in and the doctor explained them, did you understand everything? Were you comfortable asking questions?

A trip to the doctor or, God forbid, to an emergency room can be a confusing experience for anyone, but it’s incredibly challenging for someone with a cognitive impairment like Alzheimer’s disease.

I’ve been in similar situations as a patient, and even though I’m of sound mind, I found having an advocate was advantageous. In the birthing room, my husband advocated for me. He did the same during post-op following my cancer surgery, and one of my kids often kept me company while I waited to see a doctor or endured chemotherapy treatments. They also kept notes, filling notebooks with medical jargon that my chemo brain might’ve forced out.

My family’s advocacy helped me as a patient. And when it came time for me to advocate for my mother as her caregiver, my help was not just an advantage, but a necessity.

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The necessity of advocacy

We can’t see the brain just by looking at someone, so when a person with dementia walks into a doctor’s office or crosses the threshold of a hospital, the disease isn’t evident.

In the early stages of dementia, my mother could answer her doctor’s questions. Her answers were often inaccurate, however. In the interest of my mother’s health, I gently intervened. I tried to stay with my mother in the same way that my husband and children had for me, asking her for permission to assist. Hopefully, this clued the doctor in to my mother’s memory issues.

How to advocate for a person with dementia

Most healthcare providers appreciate assistance from caregivers, but you may come across someone who doesn’t understand the necessity — or thinks they know, but they don’t.

For instance, before a procedure that required my mother to lie still on a hospital gurney, my sister explained to the technician that Mom had cognitive impairment and might need assistance to follow the direction. The tech was adamant that my mother was fine and went on with the test. Predictably, my mother shifted her weight more than once on the gurney. This upset the technician, who said, “If your mother can’t cooperate, I won’t be able to continue with the procedure.”

Flabbergasted, my sister informed the technician that it wasn’t a matter of cooperation. Then she gently asked my mother to be very still. She continued to remind her not to move because moving made it difficult for the young woman performing the test.

My mother was selfless and never inconvenienced a soul, but advocating for her was essential. She might’ve felt scolded by the technician’s earlier statement.

Alzheimer’s disease complicates directions

What many would see as a simple instruction may not be simple to a person diagnosed with Alzheimer’s. During a doctor’s visit, a loved one with dementia might not respond as expected to even basic directions or questions.

Imagine, for instance, a nurse handing the cognitively challenged patient a paper gown and telling them to put it on. If the patient is without an advocate, the nurse might return to find the patient has placed the paper gown over their street clothes. Telling them to roll up their sleeves for a blood pressure cuff, step on a scale, or climb onto an examining table could also confuse them.

At times, a person who has dementia can take things quite literally. During a dental appointment, my mother was told to rinse and spit, so she did. She leaned over the side of the dental chair and spat right on the floor. The dental assistant had taken for granted that my mother would understand, and in a sense, she did. She followed the directions as given.

Often caregivers assume that healthcare workers are trained in how to speak with Alzheimer’s patients. Not all are, and even with training, they don’t know until they know. My mother would’ve been more apt to follow clearer, step-by-step instructions from her dental assistant.

After Mom spat on the floor, for instance, my sister stepped in with easy-to-understand directions. “Mom, here’s a cup. Use this to rinse.” As she was rinsing, my sister provided the next steps in the process. Pointing to a silver sink, she told my mother, “See this silver bowl? Spit what’s in your mouth into it.”

She didn’t lose patience with my mother and wasn’t embarrassed by her spitting on the floor. To the assistant’s credit, she wasn’t impatient, either. Hopefully, she saw the interaction as a learning experience.

Caregivers are their loved one’s best advocates. They’ve learned how to converse with the patient through a range of daily experiences. The healthcare professional might need several sessions with a person living with dementia before they learn to interact with clear instructions. In these and many other occasions, caregivers are necessary.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.