For people who have Alzheimer's disease or a related disorder causing dementia, doctor appointments may be stressful. How they experience these visits will change over the course of the disease. Caregivers, who have an important role in these visits, likely have many questions and limited time. To get the most out of medical appointments, caregivers can consider these tips.
1. Complete necessary paperwork
Early in the course of the disease, it's important to complete paperwork that assists with future decision-making and care. Make sure the doctor's office has copies. Revisit these documents periodically during doctor visits to ensure that your care decisions and written goals are consistent. The documents include:
- A privacy release form at the doctor's office that indicates who can discuss diagnoses, treatments and other medical concerns
- A durable power of attorney for health care, which designates who can make medical care decisions when the person with dementia is no longer able to do so
- An advanced directive that enables a person to make decisions about future care
2. Minimize stress
For some people with dementia, talking about an appointment ahead of time may be helpful. For others, it may be stressful. Use past experiences as a guide. To minimize stress:
- Schedule appointments, when possible, during the best time of day for the person with dementia.
- Allow for plenty of time to travel.
- Bring a friend to serve as a back-seat companion for the person with dementia.
- Ask the doctor's office ahead of time if there is a quiet place to wait for the doctor.
- Bring a favorite book, magazine or activity for the waiting time.
- Focus on something enjoyable to do after the appointment, such as going out for a treat.
3. Keep a medication record
Keep a list of all medications, including over-the-counter drugs and dietary supplements. You might bring a bag of all prescription and nonprescription drugs for the doctor to review. A complete record should include:
- Name of the medication
- Daily dosage
- Name and contact information of the prescribing doctor
- Prior medications that have been tried and stopped
Keep a log of daily medication use. Record any possible side effects, changes in behavior or problems that may be related to medication use. Note any missed dosages.
Prepare a list of questions you have about any medication or side effect. If the person with dementia lives in a care facility, ask the staff ahead of time about any concerns regarding medications.
4. Be ready to ask and answer questions
Keep a log between appointments to help the person with dementia or you to answer the doctor's questions. Record changes in memory, behavior or mood. Make notes of times of day or types of experiences that are challenging and those that are positive.
Before the appointment, write down any questions you have regarding symptoms and behaviors.
5. Take notes
Take notes during the appointment. You might also invite a friend to take notes or record the conversation. If you don't understand something the doctor tells you, ask for clarification.
If the doctor prescribes a new medication or adjusts a dosage, record the following:
- Name of the drug
- Instructions for taking the drug
- Reason for taking the drug or for adjusting dosage
- Possible side effects
- Instructions for when to call the doctor or to stop taking the drug
6. Discuss future care
Over the course of the disease, treatment goals will change. Discuss with your doctor expected care needs in the short term and long term. Discussions may include plans for:
- Decisions about driving
- Need for supervision or adult day services
- Memory care centers
- Nursing home care
- Palliative care
- Hospice services
Talk about how these decisions meet overall treatment goals and align with advance directives.
7. Ask for recommendations
If you need help, ask. The doctor can refer you to various community resources, such as the local area agency on aging, meal services, senior centers, respite care and support groups. Some clinics or hospitals may have a social worker to help identify and arrange support services.
8. Leave with a plan
Write down any instructions or tasks that need to be addressed between now and the next appointment, including:
- Appointments or tests that need to be scheduled
- Details about changes in treatment or care
- Concerns or instructions to share with other caregivers
- Behaviors or changes in signs or symptoms to watch out for
Medical appointment checklist (PDF file requiring Adobe Reader)