Frequent physician visits are not uncommon when you are caring for someone who has Alzheimer’s disease or dementia – especially if they have been recently diagnosed. Feeling overwhelmed and unsure of if or what questions you should ask during each visit is completely normal. Keep in mind that your loved one’s doctor is an active partner in their care, and is there to support and work with you to provide the best care possible.
To help each visit go as smoothly as possible, complete any necessary paperwork in advance, and have something available to take notes – either a small journal or your smartphone will do. If you haven’t started one, a medication log that includes all the medicines your loved one is currently taking (prescription and OTC), as well as supplements is important – especially if you are visiting multiple doctors. Be sure to list the dosage and frequency for each medication. There are several apps available to help you manage your loved one’s medications – making it easier to access and update information quickly.
Essential Questions to Ask
By nature, doctor’s appointments are filled with questions, so it is easy to become overwhelmed by the amount of information being shared. To ensure that your questions are answered, take the time to write them down before each visit, and have them ready during the appointment. While questions are specific to each person and situation, the Mayo Clinic offers some general questions caregivers may want to ask:
1. What physical and behavioral changes can I expect as my loved one’s condition progresses?
Setting expectations early can help you prepare for your future needs, whether that’s adjusting your home for your loved one’s care or looking into memory care services before they become necessary.
2. As a caregiver, what are the most important things I need to know about my loved one’s care?
Make sure that you and your loved one’s doctor are on the same page about what’s ahead and what’s expected.
3. What new treatments are available and what is your recommended course of treatment for my loved one’s condition?
This is a question you will want to ask periodically during the course of care. Alzheimer’s care is evolving all the time, and treatment plans that applied early in your loved one’s diagnosis may not be appropriate during later stages.
4. What do I need to do to make my home safer for my loved one?
If you are caring for your loved one in their home or in yours, you will want to understand the best ways to manage the home environment for their safety and well-being.
5. What types of resources and support services for Alzheimer’s exist locally? Are there any you would recommend?
While there are a number of national and local support groups and services for Alzheimer’s disease and other types of dementia, it can be difficult to research them all on your own. Seek out the advice of your local medical professional on which services or groups would be of the most value to you and your loved one.
6. What changes should I be aware of and reporting during these visits? What types of behavior would constitute an emergency?
While you should always pay attention when your loved one’s behavior changes, getting your doctor’s advice about what types of behavior are expected versus which should be concerning is good to know at the onset.
7. If a medication or medications are being prescribed: What are the side effects of this medication? How often must it be administered, and in what dose?
When you ask these questions, ensure that you have your notebook handy, or take notes in your phone. While many medications will have side effects and dosage printed on the labels, understanding these thoroughly ahead of time will save you stress later. Many specialists offer patient portals, where a summary of the visit, medications prescribed, and results from tests are available. Check with your loved one’s physician to see if this option is available.
8. If the doctor recommends a major diagnostic test or treatment, such as a biopsy, MRI or ultrasound: How will this impact my loved one’s quality of life overall? Are there negative side effects to my loved one’s behavior or health that this treatment/procedure could trigger?
Over the course for your loved one’s illness, you will need to make numerous decisions about their care. In addition to care related to their Alzheimer’s disease or dementia, your loved one may need other tests or treatments. Ensure that you understand the treatment the doctor is recommending, as well as how it will impact your loved one’s outcome versus quality of life. If you are working with multiple specialists, make sure they are communicating with each other so your loved one receives the best care possible.
9. At what point in the progression of this illness would you consider it appropriate to stop using this specific drug or treatment?
It’s important that your loved one’s doctor establishes and sets expectations early on in the treatment of an illness. Many specific drugs and treatments may only provide a benefit during certain stages of the disease.
10. If you have an after-hours question or concern, is there a paging service or on-call doctor you can contact?
You loved one’s regular doctor should have an alternative method of contact when they are unreachable, such as an on-call colleague or a paging service that can notify them if they are needed urgently. Make note of this contact information during your initial visits.
11. What are our next steps?
As your loved one’s condition progresses, you will need to make decisions about their need for a companion or more frequent hands-on care. Having an honest and frank discussion with a medical professional about assisted living communities, memory care programs, adult day care services, nursing home care, palliative care, and hospice services long before you need them will help reduce the stress of these decisions in the future.
Alzheimer’s Care is a Collaborative Effort
Remember that your loved one’s care is a partnership between you, your loved one, their medical team, and any additional family members or professional care staff you employ. Remember to take time for yourself, and ask for help when you need it.
More Alzheimer’s Care Resources
If you found this article helpful, we invite you to read these related resources including some expert advice on managing common dementia care challenges and strategies for overcoming dementia fatigue.