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Dementia: Would You Want to Know?

caregiver to alzheimers patientIf you were diagnosed with dementia, would you want to be told? If you said “yes,” you are in agreement with nine of ten Americans in nearly two dozen national surveys on the subject. Even among patients actually diagnosed with some form of dementia, 85% said that they wanted to know their diagnosis. Yet, according to the Alzheimer’s Association fewer than 50% of Alzheimer’s patients or their caregivers actually have been told by their healthcare providers. Why the disconnect?
I have written in the past about people’s greatest fears as they age, and it is not that they may (will) die; it is losing their cognitive abilities. A fair number of healthcare providers reportedly withhold the dementia diagnosis from their patients and the patients’ families because they are concerned about the stigma that knowing may represent. Others are concerned about the impact a misdiagnosis might have or they just do not know how to communicate with these patients or help the family learn to cope with the diagnosis.
Some providers also write this off as just another part of “normal aging” or ironically they “forget” to mention these cognitive symptoms. Despite all the logic or the excuses, there remains an ethical obligation to disclose a dementia diagnosis and to help the patient and family confront the issues head on. There is a general appreciation that dementia is presently incurable, but knowledge of the diagnosis early can help families to decide on treatments as well as a future plan of care. There are currently five FDA-approved treatments for Alzheimer’s Disease … the acetylcholinesterase inhibitors like Aricept and memantine, Namenda. None of these can prevent or reverse the disease, and none of these is indicated for other dementias beyond Alzheimer’s. But they can slow or eliminate the build-up of beta-amyloid or tau proteins. In a recent posting I also talked about dementia being type 3 diabetes, so medications that can limit the inflammation in the brain or insulin resistance also can have some benefit for patients. And there are therapies in development that show some promise as well.
While all states have some level of mandatory reporting of abuse on the part of healthcare providers, only a handful require dementia disclosure. More require reporting epilepsy as a traffic safety issue than require dementia. But it is more than a traffic safety matter; disclosure is one more step toward helping the caregivers to dementia sufferers get training and help in their day to day activities. As recently as 2012, it has been reported that more than 15 million Americans provided in excess of 17 billion hours or unpaid care to loved ones with dementia.
If you are a caregiver to someone showing signs of cognitive decline, speak with your loved one first and then accompany them to their next physician’s visit. Speak with the physician about your concerns. Most likely you will need a referral to a neurologist who will put in an order for a brain scan. If you insist on a candid conversation, not only will you know what the actual diagnosis is, but you will be directed to a host of community resources to help everyone manage your care receiver’s condition. You and your care receiver will be better served.
Charlotte Bishop is a Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. Please email your questions to


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