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Hospice for Dementia Patients

By Karen Appold

Despite its benefits, hospice is underutilized for advanced dementia patients. End-of-life prognostication presents a significant barrier to hospice usage.

Hospice has been shown to help dementia patients and their families. “Dementia patients who died with hospice vs. those who died without hospice have better pain control, are less likely to die in a hospital, and their families have greater satisfaction with end-of-life care,” says Susan Mitchell, MD, senior scientist at the Institute for Aging Research, Hebrew SeniorLife in Boston.

Hospice offers patients and their families’ support and care from an interdisciplinary team composed of experts in end-of-life care. Hospice team members are knowledgeable about common problems and symptoms that may occur in patients with advanced Alzheimer's.

“Family members and the affected individual need to be comfortable with nurturing what remains of the affected person’s function,” says Roger A. Brumback, MD, a professor of pathology, psychiatry, and neurology at Creighton University School of Medicine in Omaha, Nebraska. “Simultaneously, they need to adjust to the diminished capacity and the end stages of life. Hospice can help with this."

Dementing illnesses are the fifth leading cause of death for Americans aged 65 and older. “But Alzheimer’s and other dementias need to be recognized as progressive systemic illnesses that eventually lead to death,” says Thomas R. Palmer, MD, medical director at Henry Ford Hospice and a clinical associate professor of family medicine at Detroit’s Wayne State University School of Medicine, part of the Henry Ford Health System.

Hospital vs. Hospice
Medicare has covered hospice care for Alzheimer’s and other dementias since 1982. In 2004, Medicare beneficiaries aged 65 and older with dementias were 3.1 times more likely to have a hospital stay than those without dementia. In that year, Medicare’s average per-person payments were $33,007 for those with dementias, more than three times the average for those without dementia.1 Also noteworthy is that in 2009, 11.2% of hospice patients in America had dementia as their primary diagnosis. In addition, many patients near the end of life with less advanced dementia had concurrent illnesses such as cancer or heart failure, making them hospice eligible.2

Oftentimes, advanced dementia patients are cared for in a reactive manner, responding to acute problems such as pneumonia or dehydration as they occur. This often results in hospitalization, which presents risks such as the development of delirium and having a nonbeneficial and possibly harmful feeding tube inserted. “This approach often ignores the underlying illness,” Palmer says.

Frequently patients in the end stage of life reside in nursing homes. When they get an infection, which is usually the terminal event, they are typically transferred to an acute care hospital. “These infectious problems are common because the person with dementia is unable to perform the normal behaviors associated with the clearing of germs,” Brumback explains. For example, individuals with dementia do not cough well and frequently will aspirate secretions or even food particles. Thus, organisms can enter the trachea, the bronchi, and then the air sacs, where they can grow and produce bronchopneumonia.

Another reduction in the natural clearing of organisms can occur in the bladder. With normal urinary continence, the bladder fills and, with urination, a vigorous stream flushes out any organisms. However, with incontinence and urinary dribbling, there is no “flush” to eliminate organisms, allowing for bladder and kidney infections to develop.

“Once a smoldering infection gets set up in the lungs or kidneys, the infection can then break out into the bloodstream with resultant fever that leads to the person being sent to an acute care hospital,” Brumback explains. “There physicians often ‘pull out all stops’ to treat the infection. Generally, this is not successful, but nonetheless this stresses the family, and the affected person does not have a dignified death.”

Challenges to Expanding Hospice for Dementia Patients
Despite its benefits, hospice has been generally underutilized for patients dying with advanced dementia. “A survey of hospice providers reports that the No. 1 reason for this is the challenges of prognostication in advanced dementia,” says Mitchell. To enter hospice, individuals must have an estimated life expectancy of fewer than six months.

Although studies have not always shown it to be accurate, Reisberg’s Functional Assessment Staging (FAST) scale is most often used to determine eligibility for those with dementing illnesses. Patients at a stage appropriate for hospice have bowel and bladder incontinence and a vocabulary of one word or less. They are dependent for all activities of daily living, including walking. In addition, they need to have had a complication of their illness. That refers to conditions such as aspiration pneumonia, sepsis, pyelonephritis, stage 3 or 4 pressure ulcers, persistent fever, or significant weight loss.

However, “If hospice can prove eligibility and document continued decline, patients may remain on hospice longer,” says Mary-Ann McCue, RN, BSN, CHPN, hospice manager for the Norwell Visiting Nurse Association and Hospice in Massachusetts.

To better determine patients’ remaining days, Mitchell and her team attempted to develop rigorous statistics and methods to create an accurate prognostic tool, but it proved impossible to do. “The only way to overcome this challenge is to be less stringent about eligibility criteria,” Mitchell says.

Another obstacle is that hospice has traditionally been used for the care of cancer patients. “There is a unique set of needs and skills required to care for dying dementia patients vs. cancer patients,” Mitchell says.

Family's Role in Hospice
Family members often feel a strong sense of needing to do more as the patient declines in hospice. “The hospice team needs to continually update family members regarding their loved one’s condition,” Palmer says. “They need to be given suggestions on what they can do to provide comfort and understand that person-to-person care is far more effective than X-rays or blood tests at this stage of dementia.”

Comfort care is the mainstay of hospice care. Most end-of-life dementia patients are physically inactive, spending most of their time in a geri-chair or bed. For many, limbs may contract; some revert to fetal-like positions. Ensuring that the patient’s skin integrity remains intact and he or she is not experiencing pain from contractions, skin tears, or bedsores is imperative.

“Hospice clinicians and aides learn to 'read' the patient, who most often can no longer verbally express him or herself,” says Joan Wright, CMC, a certified geriatric care manager and Alzheimer’s Specialty Team leader and support group facilitator at the Norwell Visiting Nurse Association and Hospice. “Watching for visible signs of pain and discomfort is imperative so that the hospice clinicians educate family members and caregivers on how to recognize expressions of discomfort or pain."

If patients are no longer taking any form of nourishment, nurses communicate with physicians about medications and mouth care that can help with secretions and teach caregivers how to keep patients comfortable. The hospice nurse is the leader of the team that includes family and caregivers and educates everyone on what is happening as well as why and how each team member can assist.

Family members should also know that hospice provides comfort, warmth, kindness, and the serenity dementia patients need. “Emotions remain within the dementia patient long after other aspects of that person are lost,” Wright notes. “Hospice responds to those emotions, and the dementia patient responds in turn. Ensuring a peaceful environment and a dignified death is what hospice does best for dementia patients.”

To make intelligent decisions, families need to understand that dementia is a terminal illness and that patients with advanced dementia are at the end of life. “Caregivers need to decide how the patient wants to be treated in end-stage disease and what to expect, such as eating problems and recurring infections,” Mitchell says. “Once they understand, the family needs to decide what the patient would want for their care—uncomfortable, aggressive interventions or comfort care where they mostly get treatments that will keep them comfortable.”

If the family is not supportive of hospice, it is often difficult for the dementia patient to adjust. “It is hard for the individual who is confused with dementia to understand what is going on and what hospice is all about,” Brumback says. “The concept of hospice is voluntary cooperation and adjustment toward death. This is unlike a nursing home, in which the dementia patient is forced by personnel to cooperate.”

Advocating Hospice
In physicians’ training, little time is spent teaching medical students about neurologic disease, let alone dementia. Many physicians complete medical school as well as residency training with minimal information or understanding of dementia. “Thus, it is critical to push for more education on this subject,” Brumback says.

Brumback believes there is also insufficient attention given to chronic management of disease processes in physician education. “The emphasis is on acute disease treatment, which is often counterproductive for chronic diseases,” he says. “Chronic disease management needs to be properly compensated, which would encourage more physician interest. This is not only true for Alzheimer’s disease but other chronic diseases as well.”

And despite the huge number of baby boomers projected to develop Alzheimer’s disease, there appears to be insufficient motivation to get physicians to consider hospice as a legitimate alternative for dementia patients’ end-of-life care. To move physicians toward better and more efficient end-of-life care for dementia patients, Mitchell believes they need to be educated about the advantages of hospice. “Although it takes time, it saves time,” she says. The key is advanced care planning.

Choosing Hospice
Hospice services can begin after a physician provides a referral. Physicians are encouraged to continue following their patients as their hospice-attending physician. Hospice works collaboratively with the patient’s physician. If the physician prefers, the hospice physician may follow the patient. On occasion, families refer their loved one themselves, and then the physician is contacted.

One barrier to choosing hospice care is the erroneous thought that hospice is about death. “Family members might fear that the hospice staff will tell the patient ‘You’re going to die’ at every visit,” Palmer says. “But that is definitely not the case. Once they have been enrolled, patients and family members discover that hospice is about life, and the team works with each patient and family to make each day as good as possible.”

Another barrier sometimes occurs when a family desires that the dementia patient retain the option to go to an emergency department and/or be hospitalized at any time. In such situations, education regarding the disease’s course and hospice benefits is critical.

The bottom line is that patients with several illnesses have actually been shown to live longer, or the same length of time, in hospice compared with usual care.3 Nursing and other hospice staff may discover infections before they become serious and prescribe oral antibiotics if such actions agree with the patient’s goals of care. “My experience suggests that Alzheimer’s patients also live as long, if not longer, with hospice care,” Palmer says.

Hospice Outlook
With tight budgets and significant fiscal restraints, Mitchell doubts hospice will be expanded to include patients who are expected to live beyond six months. “Even though hospice can save money, the fiscal calculations to prove this can be complicated,” she says.

“There is a huge financial difference, which is both a help and a hindrance,” McCue says. “Hospice care is a wonderful alternative for an Alzheimer’s patient, but because it costs the Medicare system less, people are often concerned that they are offered it to save money. The truth is, patients often are more comfortable and safer [eg, protected from falls and additional confusion] when cared for in familiar surroundings by familiar people.”

Brumback believes groups such as AARP, the Alzheimer’s Association, and hospice organizations need to work together to lobby for the appropriate political solution. “By overcoming the barriers of physician education, the process of using hospice for patients with Alzheimer’s disease and other forms of dementia could be enhanced.”

— Karen Appold is a freelance medical writer in Royersford, Pennsylvania.


1. Alzheimer’s Association. 2009 Alzheimer’s disease facts and figures. Alzheimers Dement. 2009;5(3):234-270.

2. 2012 Alzheimer’s disease facts and figures. Alzheimer's Association website. http://www.alz.org/documents_custom/2012_Facts_Figures_Fact_Sheet.pdf.

3. Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.