Now What? Next Steps After an Alzheimer's Diagnosis

Senior Help Desk healthcare blog credited to The National Institute on Aging, part of NIH   www.nia.nih.gov

A diagnosis of Alzheimer’s disease can be difficult, but getting accurate information and support can help you know what to expect and what to do next. Use this checklist to help you get started.

Learn about Alzheimer’s disease

Being informed will help you know what to expect as the disease progresses. Here are some resources:

  • Alzheimer’s and related Dementias Education and Referral (ADEAR) Center: 1-800-438-4380
  • Alzheimer’s Association: 1-800-272-3900
  • Alzheimer’s Foundation of America: 1-866-232-8484
  • Local hospitals: May have educational programs about Alzheimer’s disease/dementia

Get regular medical care

  • Make regular appointments with your primary care doctor or specialist (neurologist, neuropsychiatrist, geriatric psychiatrist).
  • Consider going to a specialized memory disorders clinic. Ask your doctor for a referral if desired.

Find local services and support

  • Find local services by contacting Eldercare Locator: 1-800-677-1116
  • Find your local Alzheimer’s organization, such as an Alzheimer’s Association chapter: 1-800-272-3900
  • Find local member organizations and providers affiliated with the Alzheimer’s Foundation of America: 1-866-232-8484
  • Contact relevant local healthcare and social service agencies

Do some legal, financial, and long-term care planning

  • Get information to help you plan.
  • Prepare or update your will, living will, healthcare power of attorney, and financial power of attorney. To find a lawyer, contact your local bar association or the National Academy of Elder Law Attorneys
  • Learn about care you may need in the future and how to pay for it.
  • Explore getting help to pay for medicines, housing, transportation, and more. Visit the National Council on Aging.

Get help as needed with day-to-day tasks

  • Use simple memory aids like a notepad or sticky notes to jot down reminders, a pillbox to keep medications organized, and a calendar to record appointments.
  • Ask family members or friends or find local services to help with routine tasks, such as cooking, paying bills, transportation, or shopping.
  • Consider using technology solutions for medication management, safety (e.g., emergency response, door alarms), and other care.
  • See tips about coping daily, sharing your diagnosis, changes in relationships, and more.

Be safe at home

  • Get home-safety tips.
  • Ask your doctor to order a home-safety evaluation and recommend a home health care agency to conduct it. Medicare may cover the cost.
  • Consider joining the MedicAlert® + Alzheimer’s Association Safe Return® program.

Stay safe on the road

  • Talk with your doctor if you become confused, get lost, or need lots of help with directions, or if others worry about your driving.
  • Get a driving evaluation. Ask your doctor for names of driving evaluators, or visit the American Occupational Therapy Association.
  • Learn about driving safety.

Consider participating in a clinical trial

  • Ask your doctor about trials or studies at local medical centers or universities.
  • Contact an Alzheimer’s Disease Center for assessment and potential research opportunities.
  • Search for a clinical trial or study near you:
    • ADEAR Center
    • TrialMatch
  • Learn more about clinical trials:
    • ADEAR Center
    • National Institutes of Health

Stay healthy

  • Be active! Getting exercise helps people with Alzheimer’s feel better and helps keep their muscles, joints, and heart in good shape.
  • Eat a well-balanced diet that includes fruits, vegetables, and whole-grain products.
  • Continue to enjoy visits with family and friends, hobbies, and outings.

If you live alone

  • Identify someone who can visit you regularly and be an emergency contact.
  • If you are at risk of falling, order an emergency response system. A special pendant or bracelet lets you summon help if you fall and can’t reach the phone.
  • Consider working with an occupational therapist. This person can teach you ways to stay independent. Ask your doctor for more information.
  • Get tips about self-care, preventing falls, staying connected, and more.
  • Stick with familiar places, people, and routines. Simplify your life.

If you are working

  • If you have problems performing your job, consider reducing your hours or switching to a less demanding position.
  • Consult your employer’s HR department or employee assistance program about family leave, disability benefits, and other employee benefits.

Find out if you qualify for Social Security disability benefits through “compassionate allowances.” Call 1-800-722-1213.

About the National Institutes of Health (NIH):  The NIH is the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

National Institute on Aging
Building 31, Room 5C27
31 Center Drive, MSC 2292
Bethesda, MD 20892

niaic@nia.nih.gov 
Phone: 1-800-222-2225
TTY: 1-800-222-4225
Phones are answered Monday through Friday, 8:30 a.m. – 5:00 p.m. (Eastern time)

Categories: 
Alzheimer's/ Dementia Services/ Adult Day Care
City: 
Jacksonville
States: 
Florida