Getting a correct dementia diagnosis might take awhile

Dear Carol: When my husband started having some rather bizarre behavioral episodes, he made an appointment for a checkup. After an exam didn’t show problems, the doctor referred him to a neurologist who conducted some tests and diagnosed him with Alzheimer’s. Because my husband didn’t have memory problems that are unusual for his age, I wasn’t satisfied, so we saw another neurologist. She diagnosed my husband with mixed dementia with signs of Alzheimer’s, but also vascular dementia. This diagnosis seems odd to me, too. Aren’t memory problems the hallmark of Alzheimer’s? Are we right in staying with her, or should we get yet another opinion? — GD.

Dear GD: I’m sorry about your tough situation. You consulted a specialist under the direction of your husband’s primary doctor and, rightly, expected a definitive answer. Unfortunately, the correct dementia diagnosis may take longer than expected.

Dementia is an umbrella term that covers many types of cognitive problems, including Alzheimer’s (AD), vascular (VD), frontotemporal (FTD), Lewy body (LBD) and others. Different types of dementia have overlapping symptoms, so I wouldn’t be too hard on the first neurologist. In fact, from what I’ve read, a misdiagnosis, especially in the early stages, is quite common.

One area where you may have been misled is the common perception that Alzheimer’s symptoms always begin with memory loss. This isn’t necessarily true. A physician who knows the patient well might first pick up on changes in the patient’s gait, or a spouse may notice a change in sense of humor.

Additionally, a change in the ability to make sound decisions is often a sign of pending dementia of any type, including Alzheimer’s. Then, too, personality changes like your husband has exhibited might suggest LBD or FTD. Vascular dementia isn’t straightforward either.

As you can see, while dementia testing is getting better, it’s still not as easy as headlines may imply. Since you like this second doctor, I’d suggest that you work with her to fine-tune the diagnosis, if necessary, rather than seek yet another opinion.

That being said, if you find over time that you need a change, then you should follow through. Anyone struggling to live with dementia deserves to have a good working relationship with a caring specialist, and if that means changing doctors, then that’s what needs to be done.

As you move forward, remember that while a dementia diagnosis presents people with an enormous challenge, that diagnosis doesn’t change who your husband is. He should still be able to live a quality life even though it will be one where both of you are constantly working with and around symptoms.

The Alzheimer’s Association and the Alzheimer’s Foundation of American are wonderful resources for all types of dementia. Additionally, there are hundreds of books to consider, but my current favorite is “The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias” written by Gayatri Devi. This book can be purchased in bookstores and on Amazon.

Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached at carolbradleybursack@mindingourelders.com.