Dementia: Caring for Others and Planning for Ourselves

Thoughts from Suzanne O’Brien, founder of Doulagivers, and her conversation with Lisa Pahl, creator of The Dementia Deck.

Dementia presents enormous challenges, not only for the person living with it but also for their family and caregivers. Providing care can become a round-the-clock responsibility, bringing physical exhaustion, emotional strain and financial pressure. It may continue for many years, and no one should have to manage it alone.

In a recent episode of Ask a Death Doula, Suzanne O’Brien spoke with Lisa Pahl about two important issues: how we can better support families living with dementia today, and why it matters to think about our own wishes before we may lose the ability to communicate them.

Bringing caregiving back into the community

When a family is coping with dementia, planning ahead can feel impossible. They may simply be trying to get through each day. This is where community support can make a real difference.

Rather than saying, “Let me know if you need anything,” we can offer something specific. We can bring a meal, help with errands, provide transportation, or spend time with the person living with dementia so their caregiver can rest. We can organize a family care schedule or help arrange respite care.

These practical gestures provide relief and remind caregivers that they are not alone. Caring for one another is not solely a family responsibility; it is something we can share as a community.

Making our wishes known

Dementia can eventually affect a person’s ability to make healthcare decisions or communicate their wishes. If we haven’t discussed our values and preferences beforehand, our families may be left making difficult decisions without knowing what we would have wanted.

Advance care planning gives us an opportunity to consider what quality of life means to us, which medical treatments we would accept or decline, and who we trust to speak on our behalf if we cannot speak for ourselves.

Completing a standard Representation Agreement and/or Advance Care Directive is an important starting point, but we may also want to document our values and wishes more specifically, including our preferences for care in advanced dementia. These conversations should involve trusted family members and healthcare professionals.

An act of care

Suzanne O’Brien’s conversation offers a valuable reminder: we need to support those who are caregiving now, while also taking responsibility for thinking ahead to our own potential need for future care.

Every person living with dementia deserves comfort and compassionate support. By sharing the work of caregiving and having honest conversations about our wishes, we can help build a community that cares for people through every stage of life.

Planning ahead is not about expecting the worst. It is about giving ourselves and the people we love greater clarity when it matters most.