
Kathleen Allen, LCSW, C-ASWCM
Kathleen Allen has been working with older adults and their families for over 20 years.
Senior Care Management Services, LLC
Kathleen Allen, an Aging Life Care Specialist, explores the issues associated with informing a loved one about their diagnosis of Alzheimer's disease.
In clinical practice, there has been a tendency among physicians to not inform their patients of their Alzheimer’s diagnosis. Looking at Medicare data from years 2008 – 2010 including the data of 16,000 people, and interviewing patients who were being treated for Alzheimer’s, one study concluded that just 45 percent of physicians told their patients they have Alzheimer’s. It wasn’t that the physicians did not understand the benefits of informing their patients. Rather, they had reasons for not doing so: for example, they might have believed that telling would be too traumatic or too confusing for certain patients.
Perhaps because we live in a time of unquestioned rights to our own information, this finding can come as a surprise. But looking a little further, there are both pros and cons to letting a loved one know they have been diagnosed with Alzheimer’s, or with other forms of dementia. Relatives of loved ones can be torn about how to handle this. Would you tell your loved one with Alzheimer’s about their diagnosis? Are there be any good reasons not to?
Let’s first look at reasons why a family member might not inform someone of their Alzheimer’s diagnosis.
Why would we tell a loved one they have Alzheimer’s?
These are all possible reasons for telling or not telling one of their Alzheimer’s diagnosis. If you do opt to explain the diagnosis, also consider how to explain it, so that you give your loved one the support they need.
Without question, there are persons with Alzheimer’s or other forms of dementia who may not be impacted when receiving the news of their diagnosis because they are at a stage of the disease that leaves them too forgetful to retain it, or unable to understand it. But in those situations where the diagnosis is being presented to someone capable of understanding, how might we best present the information, and give support to our loved one?
As time goes on as an Alzheimer’s caregiver, find support for yourself. Especially if you are a team of one, consider additional caregivers to round out your team. Senior services agencies, your local Area Agency on Aging, and local private agencies are good options to check when looking for caregivers.
Kathleen Allen has been working with older adults and their families for over 20 years.
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