One of the most avoided subjects in health care is end-of-life care. We train about treatment, transitions, and safety, but as death approaches, often people fall silent. In home care, caregivers are often unprepared for what is not just inevitable but very human.
For those with dementia, this gap is greater. Families are afraid. Caregivers don’t know what to say or do. And the person near the end often lacks the emotional presence they still feel deeply, even when words don’t make sense.
Few have challenged this silence more than PK Beville, a pioneer in dementia care. She revolutionized the way caregivers viewed empathy, presence, and dignity at the end of life.
We live in a death-phobic society, and end-of-life care isn’t taught or handled the way it should be. In home care, most clients will die while we care for them, and we don’t have protocols for death care or good training for caregivers, whether family or professional.
What happens is that families fear, caregivers don’t know what to do, and the person with dementia receives little emotional support. Even with dementia, people notice touch and presence. They may not understand words, but they feel someone there.
Caregivers need training on acceptance of death and presence. The family and staff must be aware that this is a time for holding, touching, talking, and playing music. A good death allows the body to take the lead. People with dementia die differently, and staff must learn to understand and respect that.
Death is not a medical event but, rather, a natural occurrence. That needs to be shifted. In dementia, there are three stages: advanced dementia, transitioning, and active dying. Each of these stages requires a different skill set.
In advanced dementia, caregivers have to connect without getting verbal feedback, and people naturally pull back when there is no response.
Transitioning requires so much empathy. If you are uncomfortable with a dying body, then don’t do the job. I’m very selective about whom I train to be dementia death doulas—without empathy, it doesn’t work.
It is important that in active dying, caregivers understand how the body shuts down to explain what is happening to the family, hour by hour, without guarantees. After death, comfort the family, tidy up the room, and hold the space with dignity.
All three steps require empathy—but at different levels.
Caregivers form deep bonds, and that loss is real. If they aren’t given space to grieve, it can lead to depression or emotional hardening—and we don’t want that.
Agencies need to offer a venue for grieving. One helpful practice would be quarterly memorial services that recognize residents who died during those three months. Staff members should be invited to write or share something about the individual in their care.
A simple photo with a candle is not enough. Caregivers need actual recognition and closure. Some communities invite religious leaders in, others honor veterans with flag ceremonies, while still others hold group remembrances, but the key is to create an intentional place to grieve.
– PK Beville, Founder of Second Wind Dreams
Absolutely, because grief support groups are important, caregivers are losing someone who is like family to them, and need help dealing with that loss.
Resources such as Daughterhood.org would support caregivers to understand grief and recognize that it can, in fact, make them stronger and better caregivers if worked through. Counseling—both individual and group—is important.
It helps when in group settings, you have people at different stages of grief. Those further into their grief can mentor the others. You don’t want everyone to be in the same place right after a loss. If done well, this support is very healing.
PK Beville challenges a big blind spot in health care: our discomfort with death. This work reinforces that end-of-life care—especially with dementia—isn’t about doing more or fixing more or talking more; it’s about being more present.
When staff are educated about the dying process and allowed to grieve a loss, and when they receive emotional support, the level of care becomes deeper and more gentle, and more human. Agencies that invest in training like this don’t just improve outcomes—they protect the hearts of the people doing the work.
A good death doesn’t happen by accident. It comes when empathy, presence, and dignity are taught, modeled, and supported every step of the way.
PK Beville is a world-recognized expert in the areas of dementia care, elder advocacy, and caregiver training with over 40 years of experience. She is the Founder and CEO Emeritus of Second Wind Dreams, creator of the Virtual Dementia Tour, and the brain behind the Dementia Aware Competency Evaluation (DACE) used in over 1,000 elder care communities. PK founded Empathic Transitions in 2024, a program committed to end-of-life dementia care and the Dementia Doula Certification. Her work centers on accountability, empathy, and assuring elders—and those that serve them—are treated with dignity, understanding, and compassion until the very end.
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