Improving palliative care for dementia patients

Dementia population expected to triple by 2040

The number of Americans with dementia is expected to double or triple in the next half century as the U.S. population ages. While 6% to 8% of people older than age 65 have Alzheimer's disease, nearly 30% of people older than age 85 are affected by the disease.1

"There is a dramatic increase in the number of Americans who are diagnosed or who are going to be diagnosed with Alzheimer's disease, or related dementia," says R. Sean Morrison, MD, director of the National Palliative Care Research and Training Center in New York City. Morrison also is a Hermann Merkin professor of palliative care, a professor of geriatrics and medicine, and a vice-chair for research at the Brookdale department of geriatrics and adult development at Mount Sinai School of Medicine in New York City.

"As baby boomers start to age, by 2040, the burden on the population is going to be about 12 to 15 million people with dementia," Morrison reports.

Typically, hospice patients who have a diagnosis of dementia have been less than 10%, Morrison says. But this is expected to change as hospice and other providers make changes to include programs for dementia patients.

One potential model for dementia care in hospice is the dementia program initiated in 2003 by the Hospice of the Valley in Phoenix.

The sheer number of older adults dying of Alzheimer's disease and related dementias necessitates a special hospice dementia program, says Jan Dougherty, RN, MS, dementia program director for Hospice of the Valley.

"Hospices are struggling to know how to implement a benefit designed for a cancer model, and we knew we had a chance to do better, serving our patients and their families better than the traditional way," she says.

Dougherty previously has worked for the Alzheimer's Association, where she started a project on palliative care in nursing homes. The project encompassed how nursing homes take care of people dying of advanced dementia, she says.

Hospice of the Valley's medical director decided to improve the hospice's response to dementia patients and hired Dougherty to help make changes.

Referring dementia patients

Unfortunately, few hospices have special programs or education to handle dementia patients, and physicians make too few referrals of dementia patients to hospices.

"I think it's changing slightly, but the major problem is that until the Medicare guidelines for enrollment move beyond a prognostic-based system, it will be extremely hard to enroll patients with Alzheimer's disease," Morrison explains.

The reasons why it's so difficult for physicians to make that referral are as follows, he says:

  • Alzheimer's disease is a relatively slow, progressive disease, and the needs of patients with the disease are very different from what typically is provided by hospice, Morrison says.
  • "These patients have a tremendous amount of personal care needs," he adds.
  • Alzheimer's disease patients have long periods of stability, and then have an acute crisis that typically is triggered by an infection, such as aspiration pneumonia or a urinary tract infection, he says.
  • Physicians, families, caregivers, and even many hospice professionals do not view Alzheimer's disease as a terminal illness because patients with the disease typically live for eight or nine years and die of an acute infection, not the disease itself, Morrison notes.

"We treat the infections, pressure ulcers, behavioral disorders, and we tend to lose sight of the fact that this really is a fatal illness of brain degeneration," Morrison says. "People don't think of the hospice setting for Alzheimer's patients because we're focused on other medical issues in the background."

These factors make the dementia patients a poor match for what is typically provided under the hospice benefit, Morrison says.

However, with an estimated 4.5 million Americans who have Alzheimer's disease, it is worth the effort for hospices and health care systems to make changes that would enable more dementia patients to receive the hospice benefit, Morrison says.

Also, data suggest that when advanced dementia patients are hospitalized for an acute infection or a hip fracture, about half of them will die within six months.2

So hospital providers who see dementia patients during their crisis periods are in a good position to make hospice referrals, Morrison says.

"There's a clear need for systems of care for these patients in hospices, which are ideally situated to care for them," he adds.

A first step would be staff education.

For instance, the Hospice of the Valley has developed a comprehensive education program for staff, as well as for other health care professionals.

The hospice holds a five-hour dementia experts workshop in each of four area offices, and these are attended by nurses, social workers, chaplains, and other employees who see patients with dementia, says Maribeth Gallagher, RN, MS, NP, a dementia program psychiatric nurse practitioner and music consultant at the Hospice of the Valley Dementia Program in Phoenix.

"We start with a dementia overview to get everyone on the same page," Gallagher says.

"Last year, we provided 94 hours of training to more than 1,300 employees," Dougherty reports.

As a result of the training and changes, the percentage of hospice patients who have dementia has increased to 18% in 2006 from 8% in 2002, she says.

"Also, we've increased our length of stay, which for a dementia patient is an average of 118 days," Dougherty says. "Our overall length of stay is 68 days on average, and the median length of stay is 35 days for dementia patients and 16 days overall."

Plus, Hospice of the Valley's overall daily census has increased to 2,600 patients from 1,200 per day, and this is in a highly competitive area for hospices, she adds.

There are other strategies that hospices and health care systems can employ to improve hospice referrals of dementia patients, Morrison notes.

For one, there needs to be a better integration between hospice programs and other systems of care where there are dementia patients, and these systems include doctors' offices and long-term care facilities, he says.

"Two-thirds of the people admitted to a nursing home have dementia," Morrison says. "So clearly there is an incredible opportunity for collaboration between hospices and nursing homes."

Both providers bring higher, but different, expertise to the care of these patients, Morrison adds.

"They can work together in a way that is happening now, but not to the extent it could be," he says.

Also, there should be more integration between palliative care programs and hospices, so people who are taken care of under regular home care services could be transferred to hospice care, Morrison says.

Fortunately, the palliative care model is growing, with one in four U.S. hospitals having one, and about 60% of the largest hospitals having a palliative care program, Morrison says.

"Palliative care is a model of care that is focused on improving the quality of life of patients with advanced illness, and it's offered in conjunction with all other appropriate medical treatment," Morrison says. "So it's the ideal model of care for people with Alzheimer's disease."

For example, a palliative care program could begin to see a patient with an early dementia diagnosis and mild short-term memory loss and provide the patient and family with advanced care planning according to their quality of life issues, Morrison explains.

As the disease progresses, palliative care staff could provide caregiver support and help the patient in terms of cognitive strategies, such as having them rely on the caregiver for memory, he adds.

Continued palliative care services would include periodic evaluations of the patient's quality of life and goals and how various other health care programs might meet their goals, he says.

For instance, the patient and family could make clear decisions about when the patient should be hospitalized and for what conditions, and which treatments would be appropriate, Morrison says.

This is when palliative care staff would assist in providing the family with home health aide care and refer them to programs that are designed to help people stay at home, even when they are eligible for nursing home care, Morrison says.

"Then, as the disease progresses, there will come a point where people meet the eligibility requirements for hospice, and palliative care staff can make sure the referral is made and that the patient is seamlessly transitioned into another system," Morrison says.

"Clearly, earlier referral and appropriate documentation for people with Alzheimer's disease is important," Morrison says. "Once you enroll somebody with Alzheimer's disease under the hospice benefit, they will get better because they receive the personal care they need."

These patients might receive faster treatment of infections, and sometimes they've done so well they've been disenrolled from the hospice program, which is a problem because the disease is progressive, Morrison says.

The solution would be better documentation that explains how improvements are transitive within the setting of a progressive disease, he adds.


1. Pinderhughes ST, Morrison RS. Evidence-based approach to management of fever in patients with end-stage dementia. J Palliat Med 2003; 6:351-354.

2. Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA 2000; 284:47-52.


For more information about improving palliative care for dementia patients, contact:

  • Jan Dougherty, RN, MS, Dementia Program Director, Hospice of the Valley, 1510 E. Flower St., Phoenix, AZ 85014. Phone: (602) 636-6309. E-mail: (Requests for more information about the hospice's dementia program material, video, and/or CD, can be made at this e-mail address.)
  • Maribeth Gallagher, RN, MS, NP, Dementia Program Psychiatric Nurse Practitioner/Music Consultant, Hospice of the Valley Dementia Program, 1510 E. Flower St., Phoenix, AZ 85014. Phone: (602) 636-2220. E-mail:
  • R. Sean Morrison, MD, Director, National Palliative Care Research and Training Center, Hermann Merkin Professor of Palliative Care, Professor of Geriatrics and Medicine, Vice Chair for Research, Brookdale Department of Geriatrics and Adult Development, Box 1070, Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029. Phone: (212) 241-1466.