How to Be a Great Patient Advocate

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One of the key responsibilities of those who care for people with dementia is to interface with their physicians. As health care becomes more complex and office visits are often brief, all patients need to communicate effectively and actively participate in care planning. The increasing reliance on educated and empowered patients puts a special burden on those caring for patients who may not be able to effectively participate or communicate their needs.


Determining Goals of Treatment

There are no effective treatments for Alzheimer’s, but the disease is generally a slow moving one. Designating a health care proxy and completing advanced directives that spell out what the patient’s goals for treatment are both incredibly helpful. These goals provide a structure that will facilitate future decision-making.


Maintaining a Personal Medical Record

As helpful as advanced directives are in establishing long-term goals, the quality of day-to-day medical care will be enhanced by a caregiver who stays on top of the details. It is best to have maintain your own record of key information that you can access at any time, and not to rely on the electronic records of health care provider organizations. The following information should be in the caregiver’s computer file or notebook:

  • All prescriptions, over the counter drugs and vitamins, including dosages
  • All food, drug and environmental allergies
  • Names and contact information for all treating physicians
  • Names and contact information for all key family members
  • Copies of all lab and other test results and notes from office visits
  • Copies of health care proxies, durable powers of attorney or other advanced directives


Getting the Most Out of a Physician Visit

Office visits can be very stressful. The patient with dementia is likely to be confused or stressed. The caregiver is likely to be anxious about getting questions answered and understanding the physician. Here are some ways to defuse the tension:

  • Make the appointments at the best time of day for the patient. If your loved one has a hard time rising in the morning, don’t compound the challenge by booking the first appointment of the day.
  • Keep a log of questions that arise as you care for the patient. Before a doctor’s appointment, identify the most important ones and raise these questions first.
  • Appreciate that as the caregiver, you alone may know key patient information, such as the patient’s appetite, diet, patterns of sleep, changes in behavior and changes in physical and mental abilities. You will know most about the patient’s level of pain, frequency, duration, and triggers. Note this information in your log as well.
  • If you have unique concerns, consider writing to the doctor in advance of the appointment to allow additional time for thought or research.
  • Take notes during the visit so you can remember in detail what was said.
  • If the doctor’s explanation does not make sense to you, ask for a fuller, or a layman’s explanation.


Reviewing Medications

There are only a few drugs approved for Alzheimer’s, and they only treat symptoms, and only for a brief time. Drugs for other medication conditions can adversely affect an Alzheimer patient, so all medications need to be closely evaluated and monitored. Here is a checklist of questions:

  • What is the medication for?
  • What are its side effects? Could it make dementia worse?
  • Will it interfere with any other prescribed medication?
  • When should it be taken?
  • Should it be taken with food?
  • What should I do if I miss giving a dose?
  • How long should the patient take it?
  • What symptoms would signal that this medication should be stopped?


Tying the Recommendations Back to the Treatment Goals.

There is no clear-cut progression for Alzheimer’s. People in early stages of the disease retain many capabilities and may want active interventions to slow the progress of the disease. As the disease progresses, the goals of treatment will need to reflect changes in the patient. One of the most important, and difficult, roles that the caregiver will have is to periodically assess with the physician options for on-going treatment and care and how to best honor the goals of the patient.


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