Older Patients, Wiser Care
Should You Tell Someone He or She Has Alzheimer's?
Dear Dr. Kernisan: Should an elderly person (83) be told that she's been diagnosed as being in the early stages of Alzheimer's disease and what to expect as the disease progresses?
--Caring.com community member RQM
Yes, I generally recommend that the person be told of a diagnosis of Alzheimer's dementia, unless there's good reason to believe that she'd prefer to be shielded from a difficult diagnosis. Being told you have an incurable disease such as Alzheimer's is very difficult to hear, but every patient is entitled to autonomy. This means you should be able to make decisions for yourself (instead of doctors deciding what's best, which is how things used to be). And to make decisions, you need reasonably accurate information about your condition, including what to expect. So a person should be told, no matter how upsetting the news.
What would be a good reason to believe the person wants to be shielded from this information? Well, some people say so. They have a history of asking that difficult information go through a specific family member first. In fact, in many cultures worldwide it's actually expected that the doctor do this, and leave it up to the family to decide how much information to share with the sick person.
As a doctor, before I deliver serious or difficult news, I try to get a sense of how the person prefers to process difficult medical news. I might start asking something like: "I have some important information regarding your health that I need to share. Some people prefer to hear this information directly; others prefer that I tell a trusted family member first. What would you prefer?"
I also try to understand what the caregiver's concerns are, if a family member suggests to me that perhaps an older person should be "spared the news." For instance, sometimes I've found that caregivers change their minds once we talk about the value of having a person with early Alzheimer's (or any other dementia) participate in advanced care planning, while she still has the mental abilities to do so.
A related situation that often comes up: Should caregivers avoid mentioning the dementia diagnosis? Or alternatively, should they keep reminding a loved one of an Alzheimer's diagnosis, perhaps as an explanation of why the person now lives in a different place?
There's no right answer. What you say (or don't say) depends on the individual and the situation. Let's say your mother recently moved to assisted living, in part because of her dementia, and sometimes asks you why she's there. A gentle reminder might be reassuring: "Mom, you have Alzheimer's, like Grandma did before you, so now you live in a place where people can help you more." But if this proved confusing or distressing, a caregiver would need to find another answer, which may or may not include a fiblet.
In general, unless the person with dementia needs to make an important decision that might hinge upon understanding one has Alzheimer's (such as about financial management plans), I recommend that a caregiver do whatever seems to cause the least distress.
My prescription for caregivers:
An individual should be told of an Alzheimer's diagnosis, or any other serious medical condition that will affect the future. Exception: The person has specified other preferences regarding the communication of important medical diagnoses.
Once the person has been given a reasonable chance to absorb and act on the diagnosis, don't feel you have to make sure he or she remembers it. (Over time, this will be impossible for someone with Alzheimer's.) What's most important is figuring out how to keep your loved one as unstressed as possible.
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