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Don't Stop at Dementia

The Importance of Getting a Proper Diagnosis

· Dementia,Alzheimer's Disease,Dementia 101,Neurologist,Diagnosis

Dementia? Alzheimer's Disease?

In this Facebook Live Video, we talk about why the next question you need to ask after you hear the words... You have dementia, should be "What Kind?"

The Importance of Getting a Proper Diagnosis

I sat in the driveway to finish the call without interruption. As my friend Jason spoke, I listened intently to the symptoms he was listing off, “... he gets lost finding the bathroom… can’t find his way to the bedroom… very slow to respond… can’t find the right words…”

As I questioned Jason about the onset of the symptoms, he interrupted, eager to get answers that would bring him a sense of control, “Could it be Alzheimer’s disease?”

“It could be, but Alzheimer’s disease of exclusion,” I began.

“What does that mean?” he added.

“Alzheimer’s disease is a form of dementia. There are many different types of dementia. There are also different diseases that can elicit these same symptoms. We want to make sure we get everything else checked out before we make any assumptions. Getting the right diagnosis will lead to the right treatment, if it is possible. Let’s hope that it is.”

As we talked further I encouraged Jason and his family to contact a neurologist immediately. We discussed different types of testing that would rule out any reversible medical issues that could solve the problem.

Needless to say, I was pretty sure it was Alzheimer’s disease, but I kept that to myself. Jason promised to keep in contact and let me know of the outcome of any medical appointments.

It was three weeks later before I heard from Jason again. This time, when his call came through, I excused myself from a meeting to take it.

“How is your dad?” I asked, “... have you gotten him to a neurologist yet?”

“Dad is on hospice,” he began, choking up as he continued, “he was diagnosed with an inoperable brain tumor. It wasn’t Alzheimer’s or anything like that. It has been a huge shock but we are so grateful to know and get him the comfort he deserves.”

Taken by surprise, I shared with Jason how grateful I was that he was a strong advocate for his dad and getting the care he deserved. I admitted that I was sure that his father would be diagnosed with Alzheimer’s disease. I thanked him for sharing the news and being vulnerable with such a sensitive and intimate issue. I also thanked him for opening my eyes once again. Even though I had advised him to get a proper diagnosis, I was still operating from an assumption. I was wrong to assume and I was so glad that he pushed for a proper diagnosis.

Instead of talking of medications and symptom management we discussed comfort through hospice and support for his family. Instead of discussing the differences between nursing home, memory care and assisted living, we talked about granting final wishes, meeting his father's needs and the gathering of family around his bedside. Instead of being a professional that could provide advice, I was given a chance to be a friend to my friend and a support to his family.

Getting the proper diagnosis is imperative: Imperative to care, comfort, family planning and providing support. Making assumptions and remaining uninformed is detrimental to your health and the health of your family.

~ Written By: Cathy Braxton, Chief Education Officer

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