It’s hard to prepare for the unknown, but there are steps you can take after a diagnosis to help you and your family member cope.
They are words that no one wants to hear: You have Alzheimer’s disease. While it may be difficult to hear the diagnosis, many patients and families are relieved to learn that their instinct about “something being wrong” is actually right.
Today more people are diagnosed with Alzheimer’s than ever before, and many can live with it for up to 20 years. Because the disease is progressive (meaning that it gradually worsens), people can improve their quality of life by being honest and prepared to face Alzheimer’s in all of its phases.
Why tell me that I have a disease that’s not curable?
“It’s a question we get all the time,” said Helena Chang Chui, MD, chair and professor of neurology, and director of the USC Memory and Aging Center at Keck Medicine of USC. “Over the years we’ve been gradually detecting these types of illnesses earlier and earlier, and I think with families there is always a debate.”
If the person is in the early or moderate stages of the disease and capable of making decisions, the team consults with the patient to decide next steps.
“We tell them the risks and ask if they really want to know,” Dr. Chui said. For patients, “Having the knowledge about what the family could face helps to increase the patient’s quality of life — and that of their family.”
What should I do next?
The initial meeting with your medical provider is often too filled with medical information to discuss future plans and options. Make a follow-up appointment and keep a list of questions to ask on your next visit.
How can I take care of myself?
Being angry, sad, depressed and resentful are normal reactions to learning that you have Alzheimer’s disease. Find cathartic ways to work through your feelings such as journaling, opening up to family and friends, talking with a counselor or clergy member, staying engaged in activities you love and taking time to reassess and repurpose your life’s goals.
What options should I explore?
Ongoing counseling to assist with coming to terms with a diagnosis is recommended for patients and families, including support groups. Additionally, activity programs and treatments including cognitive exercise, music and art therapies, and memory groups may help maintain communication and memory skills.
Staying physically active, managing other health concerns like diabetes and heart health, eating well and practicing good nutrition will also help with overall wellbeing.
Drug treatment is available but the benefits do not contribute to great improvement. In the early stages, there are some medications that may slow the disease and improve alertness and memory.
How do I tell others?
This is one of the hardest parts of being diagnosed – and one where a support group can help. Understanding how others have handled this, along with other aspects of the disease, can help you better cope with what you will face.
What will happen to my family?
Don’t put off the hard conversations. The earlier you can talk about legal, financial, long-term and end-of-life issues with family members, the better. Taking action simply means that you are looking ahead with long-term plans that will help you and your family better deal with the situation.
Where can I find help?
The Alzheimer’s Association has a listening hotline (800-272-3900) for people who need support, or you can join an online community. Alzheimer’s |Greater Los Angeles has a 24/7 hotline (844- 435-7259) and website for Southern California. Your family medical provider can also give you a list of contacts in your area.
For more than 30 years, Keck Medicine of USC physicians and researchers have made major contributions to understanding Alzheimer’s disease, vascular brain injury and memory problems.
If you are in the Los Angeles area and are looking for exceptional care from some of the top Alzheimer’s specialists in the world, schedule an appointment by calling (800) USC-CARE (800-872-2273) or by visiting http://neuro.keckmedicine.org/request-an-appointment/.
By Heidi Tyline King