Hospice Care Evolves as Alzheimer's, Other Ills Raise Demand

Robert Stack of Orange, Virginia, is cared for in his home by his wife, Beverly (left), and a nurse named Ellen Colvin (right).

Video: Signs of Alzheimer's

To handle the volume of patients with end-stage Alzheimer's and related conditions, some hospices have developed specialized programs for people with dementia. Hospice of the Valley, a Phoenix nonprofit founded in 1977, is one of the nation's oldest and largest hospices, and it initiated a special dementia program in 2003. The program's director, Maribeth Gallagher, says its core curriculum focuses on educating both professional caregivers, such as nurses and physicians, and spouses, friends, and volunteers on how to maximize a dementia patient's comfort and quality of life. The hospice currently serves 639 patients with a primary diagnosis of dementia, nearly three times the number of dementia patients it had when the program began.

Unfortunately, Gallagher says, too few hospices have specialized dementia programs, and too few dementia patients are referred to hospice in the first place. One reason is that the vagaries of the disease make it difficult to predict when death is near. Moreover, physicians, families, and caregivers often do not view Alzheimer's disease as a terminal illness because patients with the disease typically live for eight or nine years before dying of, say, an acute infection.

Beverly Stack, too, has trouble thinking of her husband's illness as terminal, but she is grateful that, at the doctor's urging, she made the call to the Hospice of Rapidan. "The nurses are giving me a lot of support," she says. "And that's what I need right now. They're here for him...and for me."