The time to prepare for the future is at the earliest stage of a disease when the patient, the family and the healthcare team can plan together.  A family needs to talk openly about the consequences of the diagnosis and what it means to the future.

Denial and depression are common reactions to a diagnosis of Alzheimer's disease. Some doctors say that people appear to fear Alzheimer's more than they fear cancer.  Yet, those people who are able to face it head-on are the ones who will fare better over the course of the disease. 

When the diagnosis comes in the early stages of Alzheimer's disease, the patient and their loved ones have time to make important decisions. People with very mild Alzheimer's disease are still able to make informed decisions about their own future care, while those with moderate Alzheimer's may no longer be able to competently participate.¹ Making decisions on someone else's behalf is never easy.  Knowing their wishes and understanding their values so you can use them as a guide can lessen the struggle. 

While the ideal is to support the person in making decisions independently as long as possible, drawing up a plan for the time when they can no longer do so just makes sense. 

Establishing a will or estate plan, if one doesn't exist, should be the first step.  The next is to fully consider and make the difficult decisions about the individual's needs while they still live.  Issues include:

• Who will be the primary decision maker when the time comes
• When to stop driving and other safety concerns
• Personal care
• Treatment options and how symptoms will be managed
• Services that will be needed
• Finances
• Whether and at what stage the individual might go to a care facility
• End of life – get information about end-of-life planning at Second Opinion, End of Life (Episode 313)

Wherever possible, legal paperwork should be completed.  Advance directives are particularly important and include:

• Living Will.  This is a written, legal document that describes the kind of medical treatments or life-sustaining treatments you would want if you were seriously or terminally ill.  It isn't just for people who want to avoid being sustained indefinitely on mechanical life support. It's a way to spell out personal wishes.  A Living Will does not let you select someone to make decisions for you.
  
• Durable Power of Attorney.  This advance directive allows you to designate a surrogate – a person who will make treatment decisions for you if you are unable to make medical decisions.
  
• Health Care Proxy.  This is another name for a Durable Power of Attorney.
  
• Do-Not-Resuscitate Order (DNR).  This is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing.

Open and frank discussion among loved ones is essential.  But, families should not go it alone.  Health care providers and social workers cannot act as legal or financial advisors, but they can encourage planning discussions between patients and their families and help them with ethical issues. They can help families:

• Discuss difficult topics and complex issues
• Address emotional concerns
• Make short- and long-term plans
• Evaluate in-home care needs
• Select care personnel
• Coordinate medical services
• Evaluate other living arrangements
• Provide caregiver stress relief

Qualified clinicians can also guide patients, families, the care team, attorneys, and judges regarding the patient's ability to make decisions.² 

¹ Neurology, May 10, 2008, American Academy of Neurology
² Legal and Financial Planning for People with Alzheimer's Disease, U.S. National Institutes of Health, National Institute on Aging
 

Learn more about Alzheimer's Disease:

Key Point 2: With many diseases, the care giving burden progresses as the disease progresses.  The caregiver's health is important not only for the patient, but also for the caregiver's long term wellness.