Who Speaks for Me?
Advance Directives & the Power of a Study Partner in Alzheimer’s Care
One of the hardest realities of Alzheimer’s is knowing there will come a day when you may not be able to make your own medical decisions.
For some, that day comes slowly, with gradual memory changes. For others, it arrives faster than anyone expected. That’s why advance directives and choosing the right person to speak for you — often called a study partner in clinical trials — is so important.
Why Planning Ahead Matters
Without clear instructions, decisions about your care can be left to overwhelmed family members or even the court system.
With advance directives, you:
State your wishes while you can still make decisions
Choose someone you trust to act on your behalf
Reduce confusion and conflict among family members
Ensure your care reflects your values, not guesswork
What Are Advance Directives?
Advance directives are legal documents that guide your healthcare if you can’t speak for yourself. They often include:
Durable Power of Attorney for Healthcare
Names the person who will make decisions for you
Living Will
Outlines your preferences for treatments, life support, and comfort care
HIPAA Release
Allows your chosen person to access your medical records
Real-Life Story: Meet “Diane”
When Diane, 67, enrolled in an Alzheimer’s clinical trial, she had to name a study partner. She chose her daughter, Melissa.
“I thought it was just for trial paperwork,” Diane says.
But when Diane experienced mild confusion after an unrelated surgery, Melissa stepped in — confirming with doctors which medications were safe for someone on trial treatment.
“It hit me then,” Diane says. “Melissa isn’t just my daughter. She’s my voice when I can’t speak clearly.”
What Is a Study Partner?
In Alzheimer’s research, a study partner is more than just a driver to appointments. They:
Help monitor symptoms and side effects
Ensure instructions from the care team are followed
Communicate with doctors when the patient can’t
Provide emotional support through the ups and downs of treatment
Even outside of clinical trials, having a trusted advocate in this role is invaluable.
Choosing the Right Person
Whether it’s a study partner, medical power of attorney, or both, look for someone who is:
Trustworthy and able to follow your wishes, even if they disagree
Organized and able to keep track of appointments and paperwork
Comfortable speaking up to medical professionals
Available to attend appointments and respond in emergencies
Real-Life Story: Meet “Harold”
Harold, 72, named his best friend of 40 years as his medical power of attorney.
“He knows how I feel about quality of life,” Harold says. “We’ve had the tough conversations about feeding tubes, hospital stays, and when to focus on comfort.”
When Harold’s memory declined faster than expected, his friend was ready to step in.
“It’s not easy,” his friend admits. “But I know I’m doing what Harold wanted — not what’s easiest for me.”
How to Start the Conversation
Choose the right time — A calm moment, not during a medical crisis
Be specific — Share your wishes for treatment, hospitalization, and quality of life
Put it in writing — Use state-specific advance directive forms
Share copies — Give them to your care partner, doctors, and keep one at home
Bottom Line
In Alzheimer’s care, planning ahead is a gift — for yourself and for the people who love you. Naming a trusted person to speak for you ensures your wishes are honored, whether you’re in a hospital, a memory clinic, or a clinical trial.
💬 Need help setting up advance directives or understanding the role of a study partner?
I guide families through the legal and practical steps so they can move forward with confidence.
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