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? W