Phoenix hospice has model program for dementia patients

Staff education is main focus

The Hospice of the Valley in Phoenix, AZ, follows the assumption that hospices are an ideal environment for patients with dementia, so long as the hospice staff is well educated about how care for these patients differs from care for the traditional hospice patient.

The hospice encourages employees to become dementia experts, so every clinical team has one nurse or social worker who received eight hours of dementia care training, says Jan Dougherty, RN, MS, dementia program director of the Hospice of the Valley.

"We put together a 30-minute video on dementia care, and we required every staff member to see the video," Dougherty says. "We had talking points for each section to reiterate the most important things people need to know."

Dementia care experts work with their teams to identify better ways the hospice can support dementia care practices, Dougherty adds.

Since hospice care was changed specifically for dementia patients, the staff helped make adjustments in how they provided care, based on their experiences and observations, Dougherty says.

"The people in the field making visits would bring back their areas of concern, and we'd look at how we could solve those problems," Dougherty says.

For example, hospice managers realized the hospice was using the wrong medication for patients who had dementia, Dougherty notes.

"We had a standard protocol of ordering morphine and Ativan for every patient because cancer patients have pain and anxiety," Dougherty explains. "But with dementia patients, we realized they didn't need morphine, when maybe Tylenol would do, and you never want to give dementia patients tranquilizing drugs because it makes them more confused."

At first, the nurses were not happy with the change in medications, she recalls.

"Morphine and Ativan was their traditional arsenal for dealing with problem behaviors," Dougherty says. "But we had started with those medications, and soon realized they made the symptoms worse."

Another major change was in how the hospice trained volunteers who would work with dementia patients. Typically, volunteers would sit with patients and have a conversation, Dougherty says.

"Now, we were asking them to be present with a patient who could no longer communicate in a traditional way," she says.

The hospice provides special training for volunteers on how they can visit a dementia patient and bring meaning to a visit in which the patient could not communicate in a traditional way, Dougherty explains.

"We gave four hours of training to more than 100 volunteers from four different clinical offices," she says.

Hospice staff also are trained to provide comfort care that is specifically designed for dementia patients, including sharing with patients a sing-along CD created specifically for dementia patients, says Maribeth Gallagher, RN, MS, NP, dementia program psychiatric nurse practitioner and music consultant.

"We pick songs they've heard repeatedly over a lifetime," Gallagher says.

Hospice of the Valley has helped to create a statewide consortia to write standards of practice for dementia care, Dougherty notes.

Since Dougherty had already created educational materials about dementia care, the program's development went quickly, and the hospice has shared the training with others.

"My colleagues and I have presented a lot of information about dementia care at professional hospice meetings, and, locally, we've trained more than 1,600 medical, non-hospice professionals, including 61 professional trainings at nursing homes," Dougherty says.

As the program has evolved, it's included ideas from the staff, including the use of a caregiver grief inventory that was suggested by a hospice social worker, Dougherty notes.

"This is a wonderful way to work with the family prior to the patient's death on their own grieving experience," Dougherty says.

With dementia patients, the bereavement counselor might be assigned before the patient has died, she adds.

"Families of dementia patients are tired of telling their story, so we put together this educational program for them," Dougherty says. "It's a half-day session in which they are brought together to talk about the grief and loss they've experienced with the loved one who has dementia."

The workshop empowers people to tell their story and to share their ideas of how they make new connections with people who have advanced dementia, Dougherty explains.

Input from families led to the development of new ceremonies in which families can acknowledge the loss they've experienced, she says.

"For example, we have one ceremony called the new home ceremony for the person with dementia who can no longer live in his or her own home," Dougherty says. "This is a really tough thing for the family to cope with, so the ceremony allows them to acknowledge the loss of leaving their home behind, while celebrating their new home."

During the new home ceremony, the family reminiscences and talks about the good times they've had with the patient, she says.

Then they celebrate the new home, usually by bringing an object from the old home that will stay in the new one, Dougherty adds.

The ceremony helps families come together before the patient's death to remember who the patient really is, and it's a nice way to help them stay focused on the moment rather than on their loss, she says.

"Our goal is to put together a dementia tool kit, and we're trying to complete a dementia care path for hospice patients, outlining what you do for these patients over time," Dougherty says.

For example, one strategy is to require a biographical sketch of every patient and to perform a mini-mental status exam to evaluate each patient's cognitive status, Dougherty says.

For the hospice's staff, there has been a profound attitude shift from one of disliking care for dementia patients to one of appreciating providing care for these patients because they know they can help them, Dougherty says.