Ending Life Well
Before Memories Fade: End of Life Care Planning with for Older Adults with Alzheimer’s By Alex Trevino, Caregiving and End of Life Specialist Alzheimer’s, like other dementias, is a progressive condition that affects memory, decision-making, and communication. As it progresses, individuals gradually lose the ability to make decisions and express their wishes. This makes end of life care planning early in the disease progression essential for ensuring that the person’s preferences are known and understood by their loved ones. Why Early Planning is Critical Dementias, like Alzheimer’s disease, progress through stages. During the early stages, individuals often retain enough cognitive ability to make informed decisions. This is the ideal time to complete Advance Directives. In Arizona, Advance Directives typically include a Healthcare Power of Attorney (HPOA), Mental Health Care Power of Attorney (MHPOA), Living Will, and a Pre-hospital Medical Care Directive (known as a Do Not Resuscitate (DNR) Order). Advance Directives provide the “who” and the “what” around desired medical interventions. By making these decisions early, the person with Alzheimer’s asserts their voice and provides clear guidance to their caregivers.
Alzheimer’s-Specific Considerations When completing Advance Directives, it’s important to address decisions that may become critical as the disease progresses. Key considerations include: • Pain Management and Comfort Care: As communication abilities diminish, individuals may be unable to express pain or discomfort. It’s essential to plan for pain assessment methods that don’t rely on verbal cues and ensure caregivers can recognize and respond to nonverbal pain indicators. • Behavior Management and Care Options: Advanced Alzheimer’s can cause mood changes, aggression, paranoia, and confusion. Consider preferences for comfort and soothing strategies, and whether the individual would prefer to remain at home or transition to a specialized care facility. • Tying Up Loose Ends and Leaving a Legacy: Early in Alzheimer’s, when individuals can still recognize and engage with loved ones, it’s a good time to organize documents, share final wishes, and pass down family stories. These steps provide peace of mind and help preserve their legacy. The Risk of Waiting Too Long If Advance Directives are not completed while the person still has decision-making capacity, their loved ones may face additional challenges later. Once Alzheimer’s reaches moderate or to severe stages, the
individual may no longer be legally capable of completing these documents. At that point, family members may need to pursue Guardianship through the court system. This may be a time-consuming and somewhat complicated process that gives the court-appointed legal guardian authority to make decisions on behalf of the individual.
Protecting Dignity and Autonomy Completing an End of Life Care Plan early after a dementia diagnosis not only protects the individual’s autonomy, but also eases the emotional and legal burden on caregivers. By ensuring that wishes are documented while the person can still participate in the decision-making process, families can approach the future with greater clarity and peace of mind. If you or your loved one needs assistance with Advance Directives or have questions about End of Life Care Planning, PCOA is here to help. For assistance completing Advance Directives, contact the PCOA Helpline at (520) 790-7262.
May & June 2025, Never Too Late | Page 17
Pima Council on Aging
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