Death with Dignity & Dementia: What Caregivers Need to Know with Peg Sandeen

In this episode of the Life on Repeat Podcast, I sit down with Peg Sandeen, CEO of Death with Dignity and a social worker with 25+ years in end-of-life care. Together, we explore one of the most difficult—but important—topics for caregivers: end-of-life choices, dignity, and what options really exist for families facing dementia.

Peg shares her personal story of losing her husband to HIV-related dementia in the 1990s and how it shaped her life’s work. We talk openly about the Death with Dignity laws in the U.S., why dementia does not currently qualify, and what families can do to prepare and communicate their wishes with compassion and clarity.

This episode is about facing hard truths while also feeling empowered with knowledge, so you can better support yourself and your loved ones.

👤 Meet Peg Sandeen:

Peg Sandeen is the CEO of Death with Dignity in Portland, OR, and has more than 25 years of experience as a social worker in end-of-life care. Her personal and professional journey gives her unique insight into the challenges of caregiving, policy, and how we talk about dying in our culture.

📌 Topics Discussed:

• Why end-of-life conversations are still taboo—and why they matter
• Peg’s personal story of caregiving, loss, and advocacy
• What the Death with Dignity laws allow (and don’t allow)
• Why people with dementia do not qualify under current U.S. laws
• The differences between U.S., Canada, Switzerland, and Belgium policies
• The role of POLST/MOLST forms and healthcare agents
• How caregivers can prepare their loved ones’ wishes with clarity
• Rethinking death as a social issue with a medical component, not just a medical problem

⏱️ Timestamps (Approximate):

00:00 – Introduction + why this conversation matters

04:20 – Peg’s personal caregiving story and early work in end-of-life care

13:00 – What Death with Dignity laws cover and how they work

22:30 – Patient and family experiences: calm, clarity, and choice

33:00 – Why dementia patients are excluded from current laws

41:00 – International perspectives: Canada, Switzerland, Belgium

48:15 – The importance of advanced directives, POLST/MOLST, and choosing the right agent

56:00 – Preparing families for dignity, clarity, and compassionate decision-making

💡 Key Takeaways:

• Difficult conversations about end-of-life care are easier before a crisis
• Death with Dignity laws allow choice, but exclude people with dementia due to competency requirements
• International approaches vary, but the U.S. currently has no pathway for dementia within these laws
• Every caregiver should have clear conversations about wishes, markers of quality of life, and a trusted healthcare agent
• End-of-life care is about more than medicine—it’s about community, caregiving, and dignity

📚 Resources Mentioned:

Death with Dignity

In Love by Amy Bloom (book)

🤝 Connect with Peg Sandeen & Death with Dignity:

Website: deathwithdignity.org

🌿 Connect with Laura Vaillancourt & the Life on Repeat Podcast:

Website: lifeonrepeatpodcast.com

Instagram: @lifeonrepeat.podcast

Facebook: facebook.com/Lifeonrepeatpodcast

Email: hello@lifeonrepeatpodcast.com

These are not easy conversations—but they are necessary ones. My hope is that this episode brings you clarity, courage, and compassion as you navigate caregiving and end-of-life decisions. Please like, subscribe, and share this episode with someone who may need it. 💙