The Art of Caring

Making Mischief: Spiritual Care in Advanced Dementia

John T. McFadden 

In my role as memory care chaplain on a unit serving people with advanced dementia, I approached a social worker to ask whether a particular resident might benefit from hospice care. She offered a wry smile: “ALL the people on this unit would benefit from hospice care!” Most residents had been largely abandoned by friends and neglected by their families. Adding a caring presence could only enhance their quality of life.

Medicare in the United States insists that a physician make the prognosis (or lucky guess) that a person has less than 6 months to live before it will reimburse hospice care. “Joanie” is in her fourth year with hospice and still going strong; whereas “Emma” died before her first hospice visit. Although there are guidelines offering objective standards for determining hospice eligibility in advanced dementia, most dementias are terminal, and none of us has the knowledge or wisdom to know how quickly death will come. Ideally, palliative care should begin as soon as a person with advanced dementia enters residential care, but this remains sadly uncommon.