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The Right to Get a Proper Dementia Diagnosis

Why everyone should be able to be informed of their condition

By Mike Good

(Editor's Note: This is the first in a series examining and interpreting a commonly used "bill of rights" for dementia patients.) 

As we settle into 2015, many of us are looking ahead with enthusiasm and pondering what the new year has in store. We hope for prosperity and joyful times with our loved ones and friends. Some of us made resolutions to make important changes and others laid out plans for new beginnings.

Imagine, however, that you have an undiagnosed health condition that is causing you to function and behave differently from your norm. Each day you awake uncertain as to how it will affect you. Fear, anxiety and maybe even embarrassment keep you from looking ahead, let alone making plans.

(MORE: Dealing With an Incurable Disease)

Because of barriers to care, this is the reality for potentially millions of people with Alzheimer’s or other forms of dementia.

To help reframe the discussion around caring for people with dementia, Virginia Bell and David Troxel created the Best Friends Approach to Alzheimer’s care, a philosophy meant to help caregivers be a friend first to people with the debilitating condition. They also created the Best Friends Dementia Bill of Rights. Based on interviews with people diagnosed with dementia, it captures how those with the disease want to be treated.

Getting a Proper Diagnosis

At the top of the list is a person’s right to be informed of his or her diagnosis.

(MORE: Why Elder Care in America Isn’t Working)

I’m going to take that a little farther and say that everyone has a right to receive a proper diagnosis. Yet, the outcome of a study published in November 2014 by the American Academy of Neurology says, “Approximately 1.8 million Americans over the age of 70 with dementia have never had an evaluation of their cognitive abilities.”

There are many factors that prevent someone from getting proper medical attention, ranging from fear to lack of insurance to nonexistent family support.

The study also shows that married couples are twice as likely to have a screening as their non-married counterparts. This may indicate that those with a support system are more willing to face the outcome.

Yet, whether it’s a wife who outlives her husband, or a father whose children live far away, more and more of our aging population are aging alone. They pride themselves on remaining strong and independent. However, when they are suffering, they have no one to provide them with a feeling of security or to nudge them into a doctor’s office.


Unnecessary Suffering

Many could be living with a form of dementia that is reversible; some dementia is caused by medications, stress or vitamin deficiencies. Sadly, barriers to diagnosis can mean continuing to struggle unnecessarily on a daily basis.

Others truly have an incurable form of dementia caused by Alzheimer’s, Parkinson’s or Lewy Bodies. However, without the knowledge of what is affecting them, they are powerless to fight back and regain control of their lives.

(MORE: From Bizarre Behavior to Dementia Diagnosis)

Everyone has the right to a proper diagnosis, and without one, it’s nearly impossible to plan for the future.

It’s up to us as a society to remove these barriers. We must eliminate the stigma associated with dementia by educating the general public. We must also find ways to get trustworthy support to our isolated neighbors, friends and family.

One day it might be us living without a proper diagnosis. Is that what we want?

Please share your thoughts in the comments below.

Mike Good is founder of Together in This, an online community helping family members caring for someone with Alzheimer's. His goal is to provide information and tools to help caregivers take control and find peace-of-mind. Read More
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