In order to discuss your parent's medical issues with her doctor, you must have access to her medical records. The Health Insurance Portability and Accountability Act (HIPAA) protects the privacy of these records, so you'll need your parent to notify her doctor that it's okay to share that information with you.
If your parent has just been diagnosed with Alzheimer's and her mental state is deterioriating, time is really of the essence. Here are the questions to ask your parent's medical provider:
Why do you think it's Alzheimer's disease and not something else?
The doctor's explanation of how he arrived at a diagnosis will help you gain a better understanding of your parent's condition. It's also your best response to the denial often voiced by family members or your parent herself. Ask how the doctor distinguished your parent's condition from other illnesses or other types of dementia. Make sure you're clear on how your parent's condition differs from "normal" aging.
What stage of the disease is my parent in now?
Although Alzheimer's progresses along a gradual continuum, the disease is typically divided into early, middle, and late stages. Alzheimer's affects each person differently and its stages overlap a bit, but there are common patterns. Knowing the stages and patterns enables you to help your parent manage her symptoms and to plan ahead. Ask the doctor what makes him think your parent is in a particular stage.
If your parent is in early Alzheimer's, ask for suggestions on how to make her daily life easier and help her maintain her independence for as long as possible. Ask specifically, "What does my parent most likely need from me right now?" The doctor may offer advice on how you can help make your mother's home safer, how to manage her routine, and how to assist with her medical care (such as keeping up with appointments and taking medications correctly and on time).
What can I expect in the next stages?
Knowing what lies down the road as the disease progresses helps you think ahead. Together, you and your parent's doctor can create a comprehensive care plan. The physician can identify issues that you'll likely need to address and ways to cope with them. In addition, ask about which skills your parent may retain in each stage and how you can help her make the most of them. Now is also a good time to ask about recommended books or other reference materials and resources on Alzheimer's disease.
More Doctor Questions
What medications are available to help my parent?
Several prescription drugs may be used to slow or improve (but not reverse) the symptoms of Alzheimer's. They don't work in all patients, however, and your parent's doctor may or may not recommend one.
For each medication the doctor mentions, make sure you understand its specific purpose -- which symptom it treats and how -- as well as any possible side effects. Ask what you should do if your parent happens to miss a dose or take the wrong dose, and find out how to make keeping track of medications easier for your parent.
Also check with the doctor before your parent starts using any herbal remedies. Ask whether he thinks they're effective (based on the latest research), whether there might be harmful side effects or interactions with drugs your parent is currently taking, and what dose would be safe to use. Don't forget to mention vitamin supplements your parent uses or wants to use in any discussion of medicine.
What non-drug therapies are available to help my parent?
The majority of support available to someone with Alzheimer's isn't from drugs. Given the medical emphasis in many doctor's offices, your parent's doctor may neglect to mention them, so it's an important topic to bring up.
Would your parent benefit from a support group? Some exist for newly diagnosed patients in the early stages. What about counseling, especially if your parent is at particular risk for depression? Or perhaps behavior modification programs designed to boost memory or reinforce routines? Also, ask your parent's doctor for recommendations on improving her diet or what he thinks about adding exercise to her daily plan.
Who should we talk to regarding Alzheimer's care?
Connecting with a geriatric care specialist can be enormously helpful in dealing with a progressive disease like Alzheimer's, which will cause your parent's needs to change over time. Most physicians work with or know of good geriatric care managers, consultants, or therapists who can help you find the right resources and arrange a care plan. The practice itself may have advanced practice nurses, counselors, and therapists on staff to help you.
Among the types of specialists to whom you may want to ask for referrals, depending on your parent's situation:
- physicians (geriatrician, neurologist, psychiatrist)
- home health care professionals (such as a visiting nurse)
- occupational therapists (a health professional who can evaluate your parent's capabilities and environment and suggest changes to help her maintain independence)
More Questions About Alzheimer's
Where can I go for caregiver support and training?
If you'll be a main source of care for your parent, you'll quickly find that caregiver support is essential. In a support group for Alzheimer's caregivers or family members, you can find much-needed encouragement as well as practical information and advice from people with similar experiences and concerns.
Some caregivers also find training that focuses on caring for a person with Alzheimer's disease or dementia very useful. Sessions can cover feeding, dressing, home safety, bathing, and other practical matters. Your parent's doctor may be familiar with a hospital program or organizations that offer seminars or lectures on Alzheimer's care or related topics.
How does this diagnosis impact my parent's overall health?
Alzheimer's disease is a tough diagnosis, but if your parent is elderly, odds are that she has other medical conditions that warrant attention as well. If your parent has osteoporosis, for example, the changes in depth perception caused by Alzheimer's can make her more vulnerable to dangerous falls. Changes in eating patterns, exercise, and mental status can all influence other diseases.
Ask, too, about other common reasons your parent may need medical care and what to look out for. People with Alzheimer's can be vulnerable to urinary tract infections, for example, and may suffer from depression. It's useful for a caregiver to be aware of symptoms of common conditions since your parent may not be able to recognize them or may not bring them to anyone's attention.
What should I do in an emergency?
Many people whose parents develop Alzheimer's have little familiarity with their parent's physicians. Whether your mother is seeing her regular doctor or a new geriatric specialist, you'll want to know how you can reach the doctor (or someone else on his medical team or in his practice) at any time, and what you should do if a problem arises after office hours.
Also establish the best way for you to get your nonemergency questions answered as they arise. Is there a nurse line you can call? When you leave a message for the doctor, how and when will it be answered? Can you email questions?
Can you talk about clinical trials?
After your parent is diagnosed with Alzheimer's, she may receive information about participating in a clinical trial (a research study that tests the effectiveness and safety of a particular therapy on volunteer patients). Ask your parent's doctor what he thinks. It's important to fully understand the benefits and risks involved before participating.