12 Things to Ask the Healthcare Provider After a Dementia Diagnosis

The diagnosis is in, and it's dementia. Maybe you knew this was coming. Or perhaps it completely surprised you. Either way, it may still be hard to hear this news.

Woman talking with the Doctor in her office
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While you may have some in-the-moment thoughts, it is not uncommon for people with newly-diagnosed dementia to develop questions about the condition only after they have gone home and started processing the information.

To help you along, here's a list of questions you may want to bring with you to your next healthcare provider's visit to ensure you get all the information you need.

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Strategies for Coping with a Dementia Diagnosis

How Did You Arrive at This Diagnosis?

Sometimes, knowing what tests were conducted and how you or your loved one scored on those tests can be helpful. This can give you information about the current status of abilities including decision-making, judgment, executive functioning, communication, and short- and long-term memory.

What Else Could It Be?

While the healthcare provider likely considered this before the diagnosis was made, it's still an excellent question to ask.

Many treatable conditions can be mistaken for dementia, including:

  • Depression
  • Heavy alcohol use
  • Medication side effects
  • Vitamin B12 deficiency

Sometimes, these conditions masquerade as dementia or worsen dementia symptoms, so testing to eliminate these possibilities is essential.

What Type of Dementia Is It?

Some people don't ask this question because they don't want to know. And some clinicians use the word "dementia" because the word "Alzheimer's" scares people more.

As hard as it may be to hear, it can be helpful to know what to expect and to learn as much as possible about the specific type of dementia the healthcare provider believes is causing these symptoms.

What Stage Is the Dementia?

Some types of dementia have fairly predictable stages, such as Alzheimer's. Others, such as vascular dementia, can often remain fairly stable for a time and then suddenly progress.

How Quickly Does This Type of Dementia Progress?

Being prepared for how this disease may progress and affect you or your loved one can be helpful in making decisions ahead of time about care options, financial and legal designations, and medical treatment.

What Else Should I Expect?

Ask what other symptoms might develop so that you know what to watch for as things progress.

What Medications Might Be Helpful?

There are only a handful of medications approved by the Food and Drug Administration (FDA) to treat symptoms of Alzheimer's disease and other types of dementia, including:

  • Aricept (donepezil)
  • Exelon (rivastigmine)
  • Namenda (memantine) 
  • Razadyne (galantamine)

Ask your healthcare provider if any might be appropriate and beneficial, as well as what side effects to watch for with each particular medication.

Are There Any Clinical Trials You Would Recommend?

Some clinical trials might be available for your particular situation. You can also refer to the clinical trial match program on the Alzheimer's Association website.

There are pros and cons to participating in clinical trials. Your healthcare provider may be able to help you evaluate these, given your specific situation, diagnosis, health, and philosophy of disease management.

What Non-Drug Approaches Might Be Helpful?

Non-drug approaches for managing dementia such as exercise, diet, and mental activity can be beneficial for managing symptoms and maintaining function in some people.

Is Living at Home Safe?

Based on your reports, the practitioner's observations, and the results of the cognitive screening tests, your healthcare provider can make recommendations about the safety of continuing to live at home.

Can I Still Work?

Again, depending on the symptoms and expected prognosis, your healthcare provider may be able to help determine how long continuing to work will be possible.

What Resources Are Available to Help?

Many communities have local Alzheimer's Association groups and other support groups and resources. Your healthcare provider may be able to suggest where to begin as you adjust and cope with this disease.

1 Source
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  1. Galvin JE, Sadowsky CH; NINCDS-ADRDA. Practical guidelines for the recognition and diagnosis of dementia. J Am Board Fam Med. 2012 May-Jun;25(3):367-82. doi: 10.3122/jabfm.2012.03.100181.

Additional Reading

By Esther Heerema, MSW
Esther Heerema, MSW, shares practical tips gained from working with hundreds of people whose lives are touched by Alzheimer's disease and other kinds of dementia.