One hardship for those with Alzheimer’s is a lack of understanding about this disease from those in the general public. Though it may hurt sometimes, to some extent this is understandable. We can’t all be expected to be knowledgeable about every disease, even more common ones. Typically, we forgive those who are important to us if they need a little education. But many Alzheimer’s sufferers and their caregivers are surprised to discover that many in the medical field, who do not work with memory care patients frequently, also do not have a good understanding of what Alzheimer’s is.
Imagine someone in the early stages of Alzheimer’s falls and breaks their hip, requiring a stay in the hospital. When the doctor interviews her and her son to learn about other medical conditions that may affect treatment, they mention that she has early Alzheimer’s. The doctor seems to ignore this information, which he fails to see as relating to the broken hip, especially since after a casual interaction he notices no cognitive impairment.
However, our patient quickly runs into problems. The doctor goes over instructions for her pain medication at a time when her son isn’t at the hospital, expecting that she will manage this on her own. The next time her son comes in, he finds her in extreme pain because she hasn’t taken the medicine on schedule. He points out this problem to the doctor. The hospital staff then goes to the other extreme, hovering over the patient excessively, speaking to her in slow loud voices, and even spoon-feeding her! Those with early Alzheimer’s know that this clearly is not the appropriate response either.
Unfortunately, the fact is that medical professionals just don’t receive adequate training on how to handle those with more mild cognitive impairments. They are able to address severe impairments, but the shades of gray in between just aren’t discussed. However, that’s cold comfort to early Alzheimer’s patients and their caregivers, who feel ignored and misunderstood by the system.
There’s no real answer to this problem for individual patients and families, since the issue is entrenched in our larger health care system. Hopefully in the future, all doctors, nurses, social workers, aides, and others will receive more refined training on how to deal with those with early Alzheimer’s and similar cognitive conditions. In the meantime, caregivers and patients should not assume that doctors and others will understand what they mean when they disclose early Alzheimer’s. Be specific about the kinds of communication you expect about the person’s treatment and how Alheimer’s will affect it.