Having a loved one diagnosed with Alzheimer’s disease is always accompanied by a flood of questions.
This is probably a good thing, as asking the right questions will get you the answers you need to shift into the role of caregiver.
Of course, with so much confusion and uncertainty right after diagnosis, it’s difficult to distinguish which questions will provide you with the answers you need.
As with any medical condition, it’s always a good idea to read up about the disease. This will improve your knowledge and will help you determine which questions to ask your doctor.
A few key facts:
• Over 321,600 Australians have some form of dementia.
• The current number is expected to rise to 400,000 in less than 10 years.
• Without a medical breakthrough, almost 900,000 Australians will have dementia by 2050.
• 1,700 new cases of dementia are reported in Australia every week (1 person every 6 minutes).
• Your chance of getting dementia is higher if a parent or sibling is a sufferer.
• A predisposition to high blood sugar or diabetes increases your risk of getting Alzheimer’s.
• Currently there’s no cure for the disease.
Questions to ask
With the support of friends and family, you can create a useful list of questions. The following questions shouldn’t discount the ones you already have, but may prove useful:
1. How will Alzheimer’s affect my loved one’s overall health?
If the person is elderly, they probably have existing medical conditions. Check with your doctor how Alzheimer’s may compound any existing illness and which steps can be taken.
2. Which stage of the disease is my loved one experiencing?
Alzheimer’s progresses gradually over the years and is typically divided into mild, moderate and severe stages. The stages overlap and affect each person differently, so finding out which stage of the disease your loved one is experiencing will help you manage the symptoms and plan ahead.
3. Are you certain it’s Alzheimer’s?
An explanation of how your doctor made the diagnosis will help you to gain a better understanding of your loved one’s condition, and will also put to rest the denial often experienced after diagnosis. Get a clear understanding of how the condition differs from “normal” ageing.
4. What will the next stages be like?
Your doctor will help identify issues that you’ll have to address as the disease progresses. They will recommend coping mechanisms. This information will help with future planning and compiling a comprehensive care plan.
5. Which medications are available?
A number of existing drugs may be useful in terms of treating some of the symptoms of Alzheimer’s disease, especially in the early stages. However, they don’t work in all patients, and your doctor may or may not recommend them.
6. Which non-drug treatments are available?
This is an important question, since the majority of support available for Alzheimer’s sufferers isn’t from drugs. However, given the great medical emphasis on the treatment of various diseases, your doctor may neglect to mention the non-drug alternatives. Be sure to ask.
7. What about clinical trials?
Your loved one may be invited to participate in clinical trials after initial diagnosis. Certain experimental treatments may be effective in reversing some of the symptoms of the disease. However, check with your doctor first.
8. Should I talk to a specialist?
While your family doctor will be your first point of contact, connecting with a geriatric-care specialist can be enormously helpful in dealing with a progressive disease like Alzheimer’s. Your family doctor will be able to refer you.
9. Where can I get training and caregiver support?
Caregiver support is essential, especially if you’re the main source of care. People with similar experiences are often a great source of support, advice and encouragement, so think about joining a support group. Again, your doctor may have a reliable contact list for you.
10. How should I react in an emergency?
Whether you’re using a geriatric specialist or your family doctor, it’s important to be able to reach them (or an associate) at any time. Also find out what you should do if there’s an emergency after hours.
REMEMBER: It’s the responsibility of your medical professional to provide you with the best advice and guidance. There’s no such thing as a stupid question, so ask!