A survey of caregivers of family members with dementia who had passed away showed that more than a third reported being unprepared for the death. In interviews with caregivers of deceased family members with dementia, researchers found five main themes in how these caregivers described preparedness for death.
These interviews showed that 87 percent of those interviewed believed it was important that caregivers be prepared for death. However, at the time they were interviewed, only a third were prepared for the death, and the majority of those said their family member was enrolled in hospice. Eight of the thirteen who described themselves as unprepared said they experienced extreme stress from the lack of preparedness, which included “crying all the time” and “vomiting every morning.”
From these interviews, the caregivers identified five domains of preparedness that could be addressed. The first domain was accepting reality. One caregiver said, “there’s almost like a calmness” once this happens. The second was knowing death is near, which was often described as an intuitive feeling based on long familiarity with the family member. The other three domains were a matter of things that needed to be done, including getting your “house in order” and making sure appropriate financial, legal, medical, and other arrangements were made; saying “what you need to say,” whether this was saying goodbye or honoring accomplishments and expressing appreciation; the fifth was giving permission to die.
The caregivers also described many benefits from being prepared in these ways. These ranged from eliminating the surprise, making it easier to accept death, aiding in being present at the end of life, and easing transitions.
For the aging services field, this study suggests that there is an unmet need that the caregivers of family members with dementia think is valuable. Ways need to be found that can give these caregivers the opportunity to prepare for death. These could be part of a respite program, or materials that can be reviewed during downtime of their caregiving duties.