There is currently no cure for the more than 5 million Americans who have Alzheimer’s disease. Projections by the Alzheimer’s Association (alz.org) are that by 2050 more than 14 million Americans will suffer from this disease. If you’ve received a medical diagnosis of Alzheimer’s, what steps can you take to navigate this journey? In addition to adhering to your doctor’s recommendations, a crucial aspect of your estate planning is creating an advance directive. This document will help ensure that your wishes are honored when you may no longer be able to express them due to the progression of your illness. Having an advanced directive that accurately and legally reflects your financial and health care wishes allows you to focus on enjoying your life knowing you are doing all that you can to address your future circumstances.
Advanced Directives
You may already have advanced directives. It is a general term for various documents like a living will, instruction directive, health care power of attorney, and health care proxy. With Alzheimer’s disease now ranking as the sixth leading cause of death in the United States, there is a growing trend towards the use of a new advance directive that specifically focuses on dementia. This document is referred to as the Advance Directive for Mental Health in relation to Alzheimer’s Disease and Dementia.
An advanced dementia directive takes a comprehensive look at living with Alzheimer’s. Issues like where you will live, coping with profound changes in intimate relationships, how to finance your care, your preferred caregiver and healthcare agent, care of your pets, when you stop driving, and more. The essence of a dementia directive is to make life decisions that will span the course of time you survive with the disease. Life expectancy after a diagnosis of Alzheimer’s can range from as short as three years, with an average of eight to ten years, and as long as twenty years. By establishing an advanced dementia directive, you create a pathway for your wishes to be recognized, providing you with reassurance that your intentions will be clear when you can no longer communicate them. This document also serves as a detailed guideline for your loved ones to follow.
Considerations for VSED
Some advanced dementia directives may even include an end-of-life strategy known as “voluntarily stopping eating and drinking” or VSED. In the context of terminal illness, VSED is acknowledged as a legitimate approach to help individuals move towards death more swiftly. Originally a VSED addressed a patient experiencing physical decline while maintaining cognitive function. In the case of Alzheimer’s, a VSED addresses the opposite issue of cognitive decline. Most people, when faced with a future of being mentally unfit in a body that will not quit, prefer to find an exit strategy they consider has a modicum of dignity. A VSED can prevent distressing situations for yourself and your family system.
Though requests for VSED are currently uncommon there is a groundswell of patient-driven need. This need says that if incapacitated through dementia, their choice is not to endure what can be a long physical decline while cognitively absent. Most people do not want life prolonged beyond the point where they are participating in it. However, it’s important for state and federal laws to adapt to VSED, as current regulations mandate that long-term care facilities provide daily meals and assistance with feeding when needed.
A directive that addresses Alzheimer’s disease and other forms of dementia does not replace the more standard advance health care directive.
Most conventional health care directives address cardiopulmonary resuscitation, the use of ventilators, artificial hydration (intravenous fluids) and nutrition (feeding tube), participation in research and clinical trials, organ donation, comfort care, and pain relief services. Both advanced medical and dementia directives in place assure you and provide relief to your family. Your clearly defined choices can lighten the suffering your own family will feel when you can no longer communicate with or recognize them. Reconciling end-of-life scenarios is always challenging, but once handled, it frees you up to get on with the joy of living.
We would be happy to help you determine the correct advanced directives for your needs and desires. Please contact us if you would like to discuss this matter further. Call us at (207)848-5600 or check out our CONTACT page.
