Anyone who has or is caring for someone with dementia or Alzheimer’s knows that doctor visits can be a challenge and constant frustration. Finding a doctor’s office that is dementia-friendly is the cure to some of the frustrations caregivers endure.
I didn’t realize how vital a dementia-friendly doctor was until just recently. Despite my Mom’s advanced Alzheimer’s, she had very few other health problems. Until recently.
Mom was in a wonderful care residence, and regularly the caregivers would inform me that Mom had blood in her urine. UTIs can cause many other problems, so I got a doctor’s appointment for her immediately. Luckily for me, upon arriving at the office, Mom announced she needed to use the bathroom. I informed the staff that they were going to need a urine sample so they might as well go with her and do what they needed to do.
Standing outside the restroom door was frustrating. The technician who was attempting to help Mom provide a sample was giving too many directions too quickly. I feared that knocking on the door and inserting myself into the situation would make it worse. I also felt that they needed to learn. Right or wrong, I don’t feel it’s my job to collect samples from my Mom, Past attempts to do so hadn’t proven successful.
Fortunately, we didn’t wait too long in the exam room for the doctor. Mom has about a 1-minute memory, so even a 5-minute wait feels like hours to her. Medical offices need systems that take into consideration this unique need.
Dementia-Friendy Doctors Offices Are Crucial
Once, Mom had a neurologist appointment, and we waited in the waiting room for an hour. That tested my patience, and for Mom, it was a nightmare. Surely someone who works with memory-impaired patients understands that they can’t just wait for an hour. Reading magazines is out, Mom couldn’t do that anymore. Keeping her calm and entertained proved nearly impossible.
Forcing us to wait that long also increased the stress I felt. Mom got hostile, a fact I pointed out twice to no avail. I finally allowed Mom to confront the receptionists. Again, I felt that everyone needed to learn how their policies negatively impacted patients.
The second time Mom had an appointment with the neurologist, they let me know the doctor was behind. Thankfully, there’s a Starbucks in the same center, so while we waited, we went there for a treat.
However, these tactics don’t work when an office is ultimately out of touch with a person living with Alzheimer’s and their care partner. What happened to me in the last three months of Mom’s life compounded her problems.
On December 30th, Mom fell requiring stitches above her eye. This was in addition to the large pimple-like growth under the same eye. A week after her fall and after visiting urgent care about her eye, she had a regularly scheduled neurologist appointment.
Upon arriving to pick her up she had severe pain while walking. That was a brand new situation. We had an eye doctor appointment in an attempt to fix that problem so between the two visits we went to urgent care, again.
I find it astonishing that the urgent care doctor didn’t pay more attention to her recent fall. Mom had no prior pain while walking so something was definitely different. We attempted an X-ray but Mom refused. The doctor was unconcerned because she was able to bear weight on both legs. Just with obvious discomfort.
Understanding how her advanced Alzheimer’s affected her responses, reactions, even how she felt the pain would have made a big difference. Ultimately, I learned she had cracked her pelvis, likely during that fall. Lacking a dementia-friendly doctor resulted in a lower quality of care.
Additionally, understanding the need to take more time, slow down, and be able to pay attention to body language is crucial. People living with Alzheimer’s can react negatively to feeling rushed, confused by difficult language, or feeling unimportant.
Other Important Considerations
Certainly, how Mom was treated was paramount but I was part of the team as well. Mom’s general physician frequently made me feel like just her driver. He never inquired about my health, emotions, or stress level. Generally, he added to my stress.
Understanding how the care partners well being play a role in their overall care makes a big difference. Inquiring into their mental state might also help to avoid elder abuse. It’s an ugly truth, but stress is toxic and can manifest in terrible ways.
With attention to both people in the caregiving relationship, other potential health issues may be avoided. What is their overall nutrition like, are they getting exercise and enough sleep?
Together with these questions, it’s also important to know if they’re getting enough help. A good dementia-friendly doctor’s office will have respite care resources readily available. This is part of what is known as “person-centered care”. It’s an investment of time that will result in a better quality of care.
Finding A Dementia-Friendly Doctor
Currently, it takes effort to find the right care physician. I would start by asking those in your support group who they recommend and who they don’t. Gerientologists are doctors who specialize in eldercare. I would seek out recommendations for these types of doctors. Understandably, it’s a specialty that isn’t common, yet. It may take time to find one that is taking new patients.
Make sure you let any care provider know the best way to approach your loved one. If they are open to your advice then you’ve probably found a dementia-friendly doctor. Acting as if your advice is unnecessary would be a sign to keep looking.
The most important thing to know is that this is a multi-person partnership. With everyone working together, medical appointments might not be the nightmare for you that they were for me.
UPDATE: Thanks to the Coronavirus telemedicine is a lot more common than it was before my Mom died. I would learn all you can about this option. If handling simple things from the comfort of your home is possible, I think that’s ideal.
Additionally, there are concierge medical servives available. I looked into those for Mom but they were not available in the suburbs. I suspect that the pandemic will spur the expansion of those services.
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