I'm a Hospice Nurse. Here's What I'd Do If I Got Dementia.

Julie’s Personal Preferences After a Dementia Diagnosis

Hospice nurse Julie describes what she would personally choose after a dementia diagnosis. She emphasizes that different types of dementia progress differently and that her choices may not be right for everyone.

Plan Ahead

• Make an advance directive early. Document care preferences while still able to make decisions, including what should happen if she can no longer communicate.
• Hold a family meeting. Explain her wishes and possible care needs to the people who may support or care for her. Julie suggests that people unfamiliar with dementia ask their own doctors and nurses about the expected progression of their specific condition.
• Plan for future caregiving costs and arrangements. Consider where care would take place, whether paid caregivers or family support are available, and whether a skilled nursing or memory-care facility might be needed. Hospice does not provide round-the-clock caregiving.
• Arrange funeral preferences in advance. Decide on burial or cremation, whether to have a ceremony, and details such as music or readings. Julie would make and, if possible, fund these plans while she still could.
• Hold a “living funeral.” Gather loved ones for a celebration while she could be present and understand what people wanted to say.

Set Limits on Life-Prolonging Treatment

Julie says her personal directive would request:

• DNR (do not resuscitate) if her heart stops.
• DNI (do not intubate or use a ventilator).
• No feeding tube—and, if she could no longer feed herself, no hand-feeding either.

She views that level of dependence as incompatible with her desired quality of life. She says documenting this preference in advance could help reduce family uncertainty and guilt.

Prioritize Comfort and Quality of Life

Julie says she would prefer not to treat infections such as UTIs or aspiration pneumonia in advanced dementia, accepting that they might lead to an earlier death. She describes hospice and symptom-relief medication as ways to ease discomfort, such as fever or pain.

These are Julie’s personal end-of-life preferences, not universal medical guidance. Treatment and advance-care choices should be discussed with the person’s healthcare team and documented according to local requirements.

Presenter/source: Hospice Nurse Julie, speaking from her perspective as a hospice nurse. She recommends consulting one’s own doctors and nurses about individual dementia and care decisions.