Mar 15, 2016

How often should a dementia patient see a neurologist?

My husbands neurologist of 1 1/2 years relocated to another state; she referred us to another doctor in her office. After the first visit he referred my husband back to his primary doctor. Is this normal?

The doctor advised my husband was taking the two medications for Alzheimer's so there is not anything further he can assist with. I'm confused.

Our original doctor saw him about every 3 months. Thank you

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A reader of the Alzheimer's Reading Room submitted the question above.

Hi Jean,

I'm not a doctor so keep that in mind.

I can tell you this. I stopped taking my mom to the neurologist on a scheduled basis after about 2 years.  Although, we did see a neurologist when my mother was enrolled in a clinical trial for Alzheimer's disease.

We did have a very good personal care doctor who was focused on dementia. Everyone needs a good personal care doctor who is well versed in dementia care. I finally found the one we needed on my fourth try.

I talked to our doctor and agreed we would only send my mom to the neurologist if there was a neurological reason. Like symptoms of stroke etc.

In the fourth year my mom was having persistent headaches. Before sending mom to a neurologist he ordered an MRI. It did show continued deterioration in her brain but no sign of stroke or transient ischemic attack (TIA). These are often referred to as "mini strokes", or "warning strokes." I was worried about this. The test helped relieve my anxiety. A simple change in medication solved the headache problem.

Quite frankly, I could see with my own eyes what was happening to my mom. I focused in more on her health. I made sure to be on the lookout for urinary tract infection. She had 15 UTIs.

To be real honest. I didn't see what the neurologist could do in our case. I just didn't want to subject my mother to any treatment she did not need. In the last few years we averaged about 27 trips to the doctor a year as it was. We went for blood tests, B12 shots, and other health problems as they came up, mostly headaches and urinary tract infections. We did go to the doctor once a month for a check up. This did help my mental state.

All of the above of course was a personal decision. I think everyone should discuss issues like this with the doctor. We are all different and we all have different needs.

People often tell me they are dissatisfied with their personal care doctor. If so, make a change. I did. 3 times.

How to Get Answers To Your Questions About Alzheimer's and Dementia

You really have to use your eyes, gut, and heart while caring for someone with dementia. It isn't easy; but, you have to trust yourself. You should take action when you are concerned.

I would say the situation you are now in is normal. It is the job of the personal care physician to pay close attention to the patient, and to refer to a specialist when necessary.

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