Coping: planning ahead
Steps for Managing the Future
Alzheimer's disease doesn't develop overnight, and you don't need to cope overnight. Try to take things one step at a time. If you're confused or frustrated, remember that there's a world of resources at your fingertips, including The Alzheimer's Association Web site.
Get a diagnosis
Don't assume that it's Alzheimer's. Have a physician make the medical assessment. The earlier you get an accurate diagnosis, the more options you have for treatment and for planning. And diagnosis techniques are improving and becoming more accurate all the time.
Ask your doctor about treatment options
Before starting a treatment program, ask
- What is the stage of Alzheimer's? What is the MMSE score?
- Why did you choose this specific drug instead of the others and what are the expected benefits?
- What are the expected risks? Will treatment interfere with any current drugs or illnesses?
- How much does treatment cost?
- How often do we need to come in for follow-up visits? (At least every three months is ideal.)
- Will my insurance pay for the medications and, if so, for how long?
At follow-up visits, ask
- What kinds of tests did you do? How does the MMSE compare to prior scores? What kinds of improvements or declines are you noticing?
- Is the diagnosis still Alzheimer's?
- Is treatment working? Is this the best dose? Would changing drugs or adding a second drug help?
- Are there any worthwhile new clinical trials to consider?
From The Alzheimer's Action Plan by P. Murali Doraiswamy, MD, and Lisa P. Gwyther, MSW, with Tina Adler. Copyright (c) 2008 by the authors and reprinted by permission of St. Martin's Press.
Try to make the most of your medical appointments.
For information about clinical trials, visit the National Institute on Aging's Web site. Clinical trials are designed to assess the safety, effectiveness and potential of treatments for people with Alzheimer's. Volunteering for a clinical trial is one of the greatest public services that an individual with Alzheimer's can contribute. These clinical trials may also offer you or your family member free care and monitoring by health care professionals who specialize in Alzheimer's.
You'll be much more effective and helpful if you're healthy and happy. Professionals are standing by to help you find the right group. A few to consider:
- The Alzheimer's Association: 1-800-272-3900 (open 24 hours).
- The Area Agencies on Aging Hotline: 1-800-677-1116.
- A doctor, nurse, social worker, psychologist or clergy member who you trust.
- A faith-based organization that is important to you.
- The Alzheimer's Disease Education and Referral Center (ADEAR): 1-800-438-4380.
Call in the troops
Talk to your friends and family, and let them help you. This is not the time to be a hero or a martyr: Alzheimer's is bigger than one person should handle on his or her own. Don't try to be perfect. Caregiving is difficult. Enlist the help that you will need.
Consider finding a Geriatric Care Manager (GCM).
GCM's can help you with a variety of planning issues including arranging care services, acting as a distance care liaison, counseling, reviewing finances and determining assistance eligibility. To find out more or to locate a potential care manager, visit the National Association of Professional Geriatric Care Managers or call 1-800-243-5656.
Check out a few online support groups and connect with other caregivers.
Some to consider:
- The Alzheimer's List at www.alzheimer.wustl.edu/Education/default.htm
- The Eldercare Chat Forum
- The Alzheimer's Association Message Boards
For Caregivers: Limit what your loved one needs to remember
Take responsibility for anything that requires memory or complex planning. Keep appointments, take the person places, and find someone to help with tasks like housekeeping and paying bills. Helping the person with Alzheimer’s find a new daily routine is important.
Read helpful pamphlets. They're free!
A few recommended pamphlets for caregivers include the "Caregiver Guide," "Home Safety for People with Alzheimer's Disease," and "Challenging Behaviors: Special Issues for Family Care."
Locate These Legal and Financial Documents
Locate your loved one's legal and financial documents including:
- Wills and living wills
- Durable health care power of attorney
- Financial powers of attorney
- Insurance policies
- Stock and bond certificates
- Bank and brokerage statements
- Pension and retirement benefit summaries
- Social Security payment information
- Rental income paperwork
- Deeds or mortgage papers or ownership statements
- Monthly or outstanding bills
If certain documents, such as durable health care power of attorney, have not yet been made, do so. Visit BenefitsCheckUp to see if you're eligible for special benefits.
Get Financial Help
If you have been diagnosed with early stage Alzheimer’s, you will need to prepare for the management of your finances. It is important to find someone you trust to assist you with your financial matters. The sooner, the better. For caregivers, it is important that financial and health
If it's still early in the disease
One of the first things Alzheimer's does is cause problems with calculations. The disease causes people to make and miss mistakes. Find someone trustworthy to assist with finances. If you have been diagnosed, share your preferences as early as possible. If you are a caregiver, always ask for input.
If the disease has already progressed
Even if a person's disease is advanced, caregivers should always talk to the person before taking action regarding finances. When you talk to someone in the later stages of Alzheimer's, emphasize the hassles, worries and frustrations of keeping track of complicated finances. Suggest a trusted local person who can help. Then, reassure the person that you will keep her informed and/or involved with any financial decisions.
Talk to a trusted and knowledgeable local professional to determine how you can afford health care and daily living over the course of the disease.
You might want to use an online management system that consolidates your bills, pays them automatically and informs you of current balances. For an example, visit Paytrust.
For information on locating an attorney specializing in Elder Care Law, visit The National Academy of Elder Law Attorneys Website.
Find out about care options
Know your options before you become overwhelmed. Call the Eldercare locator at 1-800-677-1116 to learn which care options are available in your area.
From home aides to adult day programs to assisted living, there are a range of options to explore in addition to full-time home care or nursing home placement. Your decision will depend on your unique situation, including finances, the disease's progression, availability and physical capabilities.
For help deciding what would work best for you, call the Alzheimer's Association hotline at 1-800-272-3900.
Make a list of your biggest remaining questions and worries
For any questions you might have about Alzheimer's, caregiving or where to find help and information.
The Alzheimer's Disease Education and Referall Network
For information on Alzheimer's disease, research and resources.
For information on how to connect with local aging-related resources.
Once you have created a list of questions, call the experts!
Whether you have Alzheimer’s or are caring for someone who does, don't be nervous or embarrassed to ask anything. Chances are, someone else has been through a similar situation. A few great phone resources are listed to the right.
Search the Web
The Internet is a great way to get the latest happenings in Alzheimer's research and connect with other people in your situation. Our resources page provides an easily searchable database of recommended Alzheimer's-related links.
If you're the sort of person who likes to read everything you can get your hands on, visit the Alzheimer's Association listing of books and resources by topic.