Planning Ahead for Dementia: The Choices We Must Make While We Can—with Lisa Pahl

Join the Next FREE Death Doula Global Training:  ​​​In This Free Training, You’ll Learn: 1) The 3 Phases of End of Life How to recognize the Shock, Stabilization, and Transition phases and what each one needs. 2) What Families Can Expect Common physical, emotional, and spiritual changes as someone approaches death. 3) How to Provide Real Comfort & Support Simple, non‑medical comfort measures and how to be a steady, calm presence.   What would you want if, one day, dementia took away your ability to recognize your loved ones, communicate your wishes or make your own healthcare decisions? It is a painful question—but avoiding it does not protect us or our families. In this deeply important episode of Ask a Death Doula, Suzanne B. O’Brien, RN, welcomes back Lisa Pahl, LCSW, creator of The Dementia Deck, for an honest and compassionate conversation about dementia, caregiving and the importance of planning ahead. Dementia is not one specific disease. It is an umbrella term describing symptoms that affect memory, thinking, behavior and a person’s ability to manage everyday life. Alzheimer’s disease is the most common cause of dementia. The number of people affected is growing rapidly as our population ages. In 2026, an estimated 7.4 million Americans age 65 and older are living with Alzheimer’s dementia. Nearly 13 million family members and friends are providing unpaid dementia care. That care can be relentless—physically, emotionally, psychologically and financially. It may eventually require supervision 24 hours a day and can continue for many years. Although someone with Alzheimer’s lives an average of four to eight years following diagnosis, some people live as long as 20 years. Suzanne and Lisa explore the two urgent challenges before us. Challenge One: Supporting Today’s Dementia Caregivers When a family is already living through dementia, we must show up. One person cannot—and should not—be expected to carry this responsibility alone. Families need to “share the care” by bringing together relatives, friends, neighbors, community organizations and professional resources. Support may include: Creating a care team and using a support-system scheduler. Assigning specific, manageable responsibilities to different people. Arranging regular respite so the primary caregiver can rest. Helping with meals, transportation, appointments and household tasks. Providing companionship for the person living with dementia. Offering emotional support without judgment. Connecting the family with local dementia, hospice and caregiver resources. We often tell caregivers to ask for help. But overwhelmed caregivers may not have the energy to identify what they need, organize everyone or repeatedly make requests. Sometimes the most compassionate response is to offer something specific: “I can stay with your mother on Tuesday from 1:00 to 4:00 so you can rest. Would that help?” Caregiving cannot be sustained by one exhausted person. It requires a community. Challenge Two: Making Our Own Choices Ahead of Time The second challenge is more sensitive—but equally important: What have we learned from today’s dementia experiences about the choices we would want for ourselves? Dementia can eventually take away the cognitive capacity required to make and communicate healthcare decisions. By the time a crisis occurs, it may be too late for the person to explain what quality of life means to them or which interventions they would—or would not—want. That is why these decisions should be considered while we are healthy and able to make informed choices. Questions to consider include: What does an acceptable quality of life mean to me? Under what circumstances would I no longer want life-prolonging treatment? Would I want CPR, hospitalization, a ventilator or a feeding tube? How do I feel about antibiotics and other treatments during advanced dementia? What would I want if I could no longer recognize my family, communicate or care for myself? Who do I trust to speak for me? How much flexibility do I want my healthcare representative to have? What are my wishes concerning assisted oral feeding and hydration? What do I understand about voluntarily stopping eating and drinking, or VSED? There is no single answer that is right for everyone. The right decision is the one that reflects your own informed values, beliefs and definition of quality of life. What Is VSED? VSED stands for voluntarily stopping eating and drinking. It is a decision by a person with decision-making capacity to stop taking food and fluids with the understanding that this will hasten death. Because it must be voluntary, a person considering VSED generally needs to have the capacity to understand and make the decision at the time it begins. Requests concerning assisted feeding after capacity has been lost are more legally and ethically complex and may be treated differently depending on state law, the wording of the directive and the policies of the care facility. This is why anyone considering these choices should speak with their healthcare provider, chosen healthcare representative and an elder-law or healthcare attorney familiar with the laws in their state. A revealing study surveyed long-term-care practitioners, primarily medical directors and clinicians. Among the 69 respondents who answered questions about their own future care, 81.16% said they would be somewhat or very willing to consider VSED for themselves in the event of late-stage dementia. However, the same study found less support for honoring this choice for patients—demonstrating a meaningful gap between what some practitioners might consider for themselves and what systems may be prepared to support. The Importance of a Dementia-Specific Directive A standard advance directive may not address the complicated realities of dementia. A dementia-specific directive allows you to describe your wishes in much greater detail, including your personal quality-of-life thresholds, preferences for medical treatment and thoughts regarding assisted eating and drinking. But completing a form is only the beginning. Your wishes should be: Written clearly. Discussed openly with your family. Shared with your healthcare representative. Reviewed with your medical providers. Evaluated with appropriate legal counsel. Revisited regularly as your health, values or circumstances change. Available where your family and medical team can find them. A video explaining your wishes, in your own words, may provide additional clarity for your family—but it should supplement, not replace, properly completed legal documents. Lisa’s Dementia Deck offers a compassionate way to begin these conversations. Its questions help individuals and families explore the values, fears, preferences and practical decisions that can otherwise feel too difficult to discuss. Our Shared Conclusion Suzanne and Lisa both share that they have made their wishes known: if they were ever living with advanced dementia and had reached their personally defined threshold of no acceptable quality of life, they would not want unwanted medical interventions to prolong that state. This is not a judgment about the worth of anyone living with dementia. Every person remains worthy of dignity, comfort, connection and compassionate care. It is a statement about personal autonomy—and the right of every informed person to decide what quality of life means to them. Planning ahead is one of the most loving gifts we can give ourselves and our families. When we document our wishes and explain the values behind them, we reduce the possibility that the people we love will someday be forced to guess. The conversation is difficult. The consequences of never having it can be far more difficult. Resources Mentioned The Dementia Deck and The Death Deck Compassion & Choices Dementia Values & Priorities Tool Doulagivers Institute Guode Information About VSED Doulagivers Institute Support System Scheduler  End of Life Choices New York Dementia Advance Directive Advance Directive for VSED—Northwest Justice Project Study: Long-Term-Care Practitioners’ Views on VSED Directives This episode is intended for education and conversation. It is not individual medical or legal advice. Laws and facility policies concerning advance directives, assisted feeding and VSED vary. Please consult qualified medical and legal professionals in your state.