Planning Ahead: A Good Plan for Alzheimer’s Patients

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There’s a reason why Alzheimer’s disease is referred to as “the long goodbye.” On average, a person with Alzheimer's lives four to eight years after diagnosis, but can live as long as 20 years, according to the Alzheimer’s Association. 

If you or a loved one has Alzheimer’s, the journey will be more bearable if you begin planning immediately after being diagnosed. The earlier you start, the greater the likelihood that you can participate in the planning process. In addition, you’ll improve the chances of slowing the onset of more devastating symptoms, lengthening your or the patient’s independence and improving your quality of life.

Larry Lawhorne, MD, geriatric medicine specialist with Wright State Physicians in Dayton, says that planning guidance is one of the most important services physicians can offer Alzheimer’s patients. The earlier this happens, the better.

“When their judgment is still good, when their insight is still good, we can ask them lots of questions about what they would want or not want as the disease progresses,” he explains. “This is extremely important to families.”

Preparing for the future with an Alzheimer’s diagnosis includes:

  • Making legal and financial plans
  • Knowing who you’ll turn to for help and support
  • Planning how you’ll manage in the early stages
  • Clearly communicating how you want to live the rest of your days

Legal and Financial Planning

Legal planning includes preparing for future health care needs, making plans for finances and property, and determining who will make decisions once you or your loved one are no longer able to do so. Some of this planning can be very complex, so the earlier you begin, the better.

The steps include:

  • Organizing needed documents (wills, financial documents, medical information)
  • Taking an inventory of your assets and debts (yours and your partner’s)
  • Identifying family members that should be included in your financial plans
  • Researching and identifying the costs of care (for now and in the future)
  • Reviewing government benefits for which you may be eligible, such as veteran’s benefits and/or long-term care insurance 
  • Determining who will help you with routine finances, like paying bills, handling benefit claims, making investment decisions, handling bank accounts and preparing tax returns
  • Considering hiring an attorney to assist with legal planning

Gather Your ‘Team’

As soon as you or your loved one is diagnosed, figure out whom you will rely on for help, care and support during the course of the disease. Getting people to help works best if you talk to them in advance and work with them to develop a well-thought-out support plan, rather than trying to enlist help in an emergency.

Help from friends, family, members of your faith community and others can minimize stress and feelings of being overwhelmed. Developing a support network may help you lead a more productive, active and engaged life during the early stages of the disease.

Your medical team can be an invaluable asset by facilitating planning discussions between you and your family. Qualified medical professionals can also guide you, your family, care team, attorneys and judges regarding your or a loved one’s ability to make decisions.

If you or a loved one has Alzheimer’s, the journey will be more bearable if you begin planning immediately after being diagnosed.

Plan for Your Daily Needs

If you or your loved one has been diagnosed early, you’ll need to plan for managing the daily activities of living. The National Institute on Aging recommends considering the following:

  • Whether you can continue working, and for how long
  • Who will help you with routine tasks like cooking, driving and shopping
  • Finding a home health agency to conduct a safety audit of your home
  • Identifying someone who can visit you regularly if you live alone – to check on you and make sure you’re safe
  • Ordering an emergency life response system
  • Talking to your employer’s HR department to find out whether you are eligible for family leave, if you are caring for someone with Alzheimer’s

End-of-Life Planning

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One of the greatest gifts you can give to your loved ones is to discuss your end-of-life preferences now, while you are able to make decisions for yourself. “It takes such a burden off the family to know what people want at the end of life,” says Dr. Lawhorne.

Having a forthright and upfront discussion with those closest to you, as well as your care team and a legal professional, will help ensure that your wishes are met.

The Alzheimer’s Association recommends that you consider the following as you think through what you want at the end of life:

  • Where do you want to spend the end of your life? At home, in a nursing facility?
  • What are your religious, spiritual or cultural beliefs about end of life? How can these be respected and honored?
  • Do you want all available treatment measures to be taken? Or are there treatments you don’t want?

Advance directives are legal documents that enable you to document your preferences regarding treatment, comfort care and care at the end of life. These include:

  • Living wills, which record your wishes for medical treatment near the end of life or when you are permanently unconscious and cannot make decisions about treatment
  • Health care power of attorney. This designates someone (called an agent or proxy) to make health care decisions when you can no longer do so.
  • A do-not-resuscitate order (DNR), which directs medical professionals not to perform cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. A DNR is signed by a doctor and placed in your medical chart.

Preparing and discussing your wishes is “a constant conversation,” says Dr. Lawhorne, “because as we’ve talked about, it’s a journey…. It’s going to go on for a long time.”

Small Steps: Keep a Journal
Write down details about your symptoms and how well they do or don’t respond to particular meds.