Alzheimer's and Dementa Caregiving, Dementia Caregiver Stories

Getting a Diagnosis

The process can be long and confusing and emotional. If you feel you feel like you're running in circles, we understand.

Things to know

You might not know where to start. Often, people start the diagnostic process with their primary care doctor.

A primary care doctor, a geriatrician, a psychiatrist and/or a psychologists can all be part of the diagnosis process.

ISSUE

The diagnosis process can take time. Scheduling appointments, follow-ups, and tests can involve a lot of waiting.

 

Some families find the first doctor isn't the right fit, and will decide to find another doctor. Loved ones and caregivers may find this process stressful.

TIMING

Doctors use a variety of factors to diagnose dementia. There's no one test.  

Your Loved One may be nervous  and/or no longer able to manage and advocate for their own health. Someone should go with them to appointments.

If you are confused about the process,  just ask. You've never done this before.  You're not supposed to be an expert 

AN APPROACH

How they did it

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ANITA

Age: Early 30s

Loved One: Mom, Early 60s

Diagnosis: Vascular Dementia

Years Since Diagnosis: 1

I didn't know how to get a diagnosis. There are so many types of doctors.  I said to my mom, “I’ve noticed some things. You might be having a problem with your memory. I’d like you to get it checked out. Maybe medication could help.  I want to make sure you’re safe and healthy.” I did not bring up Alzheimer’s. She was reluctant. I guided her along. 

 

We started with her nurse practitioner.  The nurse practitioner said “do you have any issues with your finances?”  Mom said “no.” I said “all your utilities were shut off last month because you haven't paid your bills.” The nurse practitioner asked me what referral I wanted next. I should have done research before. I could have skipped months of headaches. She referred us to a neurologist.

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RENE

Age: Early 40s

Loved One: Mom, Mid-70s

Diagnosis: Alzheimer's

Years Since Diagnosis: 2 months

My mom said she felt like she was a little forgetful but it was her sleep.  This is my biggest regret -- I regret that I wasn't insistent. She said “I’ll make an appointment. I’ll talk to my doctor.” I assumed that meant she’d talk to her doctor about memory issues. But she told him she was having sleeping problems and he prescribed trazadone.  Then COVID hit. We assumed she was under doctor’s care for her memory - but she wasn’t. She was living alone and not seeing anyone. 

 

In August, I realized she had no memory of our Thanksgiving conversation. She was not doing well. What she seemed to “remember” me and my aunt “tricking” her. I pieced together that her long time doctor had retired and she had not gotten a new doctor.

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HENRY

Age: Early 40s

Loved One: Mom, Mid-70s

Diagnosis: Alzheimer's

Years Since Diagnosis: 5

We went to see her primary care physician. He was in his 70s. We were frustrated that he wasn't on top of things. The doctor made a recommendation to a neurologist in that same hospital system. They did tests. 

 

I don't remember the  results. From that conversation, I took away that she was  at the beginning of some cognitive problems but the doctor wanted to see it play out.  My sister and I said “no.” We had to convince my dad. We looked for another neurologist. Through friends, we got connected with a neurologist and she diagnosed my mom. We’ve been working with her for six years. She’s a researcher but she spends a portion of her time with patients. It took 12 months from the time we went to see her primary care doctor until we had a diagnosis.

How you can do it

Learn more about how other caregivers have navigated the diagnosis process

MORE DIAGNOSIS STORIES

Download the scratchpad to get an overview of the diagnosis process and prepare for medical appointments.

DIAGNOSIS SCRATCHPAD