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Hospice Care and Alzheimer's Disease

Planning Ahead For Comfort at the End of Life

By James Clyde Sellman, Ph.D.

Updated July 01, 2008

(LifeWire) - Alzheimer's disease has edged out diabetes as the sixth leading cause of death in the United States, and the number of families caring for someone with this progressive brain disorder is only expected to grow as the population ages.

As a result, hospice care, once associated almost exclusively with cancer, is increasingly viewed as an end-of-life option for Alzheimer's individuals. But because this disease progresses slowly -- and the late stage isn't easy to define -- people with Alzheimer's can face difficulties meeting hospice eligibility requirements.

Benefits for the Patient

Some aspects of hospice care may seem unlikely to help people with severe dementia. The counseling usually offered to dying patients may be of little use for those who've lost the ability to communicate with language, for example.

But other hospice services could have a positive impact. Pet therapy (the holding and stroking of small, gentle animals), for example, can provide comfort and reassurance. Music therapy has shown even greater promise.

In Musicophilia: Tales of Music and the Brain (2007), Dr. Oliver Sacks writes that for those with severe dementia, music -- particularly familiar music - can sometimes elicit "emotions and associations that had been long forgotten, giving the patient access once again to moods and memories, thoughts and worlds that had seemingly been completely lost."

People with severe dementia may also derive benefit from reassuring, friendly voices or being read to, even if they can't understand what's being said.

Certainly, they benefit from palliative care -- efforts aimed at alleviating pain and discomfort without extending life. In conventional settings, researchers have found that Alzheimer's individuals endure more pain than necessary because they can't express themselves with words, and their agitation is often misunderstood.

Support for Caregivers

Caring for someone with severe dementia is physically and emotionally draining. In regard to prognosis, those with Alzheimer's can live anywhere from 8 to 20 years after diagnosis.

The demands often go beyond what family members alone can provide. But hospice helps make it easier for those with dementia to remain in the familiar surroundings of their own homes. While family members continue providing much of the day-to-day care, their efforts are augmented hospice nurses, social workers and trained community volunteers.

Some hospice programs also arrange respite care to give family caregivers a break.

Sometimes the burdens of late-stage dementia force the family to seek full-time residential placement for a loved one. There may be hospice options in this case, as well, including residential hospices and hospice care provided through a nursing home.

Last but not least, hospice offers family grief or bereavement counseling.

Planning Ahead

If a loved one has Alzheimer's disease, you should discuss end-of-life care preferences as soon as possible. He or she may have strong feelings on these matters.

Advanced directives are legal instruments that help ensure that such preferences are honored. They include:

However, such steps should be undertaken while the person is still legally competent.

In choosing a hospice program, it's important to find out what services are available and whether the program is Medicare-approved. A convenient location certainly matters, too. In addition to conducting your own research, speak with people who've had family experience with a given hospice program. Doing so can help you get a more personal perspective.

Eligibility and Financing

Because Medicare covers more than 80% of their patients, hospice programs generally apply Medicare regulations across the board. The biggest hurdle for a person with dementia is the stipulation that she or he has no longer than six months to live. Physicians make their assessments using Medicare eligibility guidelines, which focus mainly on physical deterioration. To be eligible for hospice care, a patient must be:

  • unable to walk unassisted
  • unable to dress him- or herself
  • unable to bathe or see to grooming needs without help
  • unable to control bowel and bladder
  • unable to converse effectively (though some language may remain)

In addition, the individual must have had at least one serious health issue, such as a severe lung or kidney infection, evidence of profound nutritional problems, or severe open bedsores.

A 2007 study in the Journal of Pain and Symptom Management found that hospice patients with dementia often exceed the six-month limit. It's important to know that, should this happen, a patient can be recertified for successive 30-day periods and in order to continue receiving Medicare coverage.

On the other hand, the study suggests that the six-month rule "has hindered access" to hospice care for those with dementia. Currently, people with Alzheimer's disease (and other forms of dementia) account for just 10% of all hospice patients.

Sources:


"CareFinder: Finding Care That's Right for You." Alz.org. 2007. Alzheimer's Association. 20 Jun. 2008 <http://www.alz.org/national/documents/brochure_carefinderguide.pdf>.

"End-of-Life Decisions." Alz.org. 10 Oct. 2007. Alzheimer's Association. 19 Jun. 2008 <http://www.alz.org/professionals_and_researchers_end_of_life.asp>.

"Frequently Asked Questions About Hospice for Dementia Patients." Mphi.org. 2002. Michigan Public Health Institute/Michigan Dementia Coalition, Hospice & Palliative Care Work Group. 23 Jun. 2008 <http://www.mphi.org/files/HFF.pdf>.

"Hospice Eligibility Guidelines for Persons with Dementia." Mphi.org. 2002. Michigan Public Health Institute/Michigan Dementia Coalition, Hospice & Palliative Care Work Group. 22 Jun. 2008 <http://mphi.org/files/Hospice.pdf>.

Hurley, Ann C., Ladislav Volicer. "Alzheimer Patients and Hospice." Encyclopedia of Death and Dying. 2007. Macmillan/Advameg Inc.. 22 Jun. 2008 http://www.deathreference.com/Gi-Ho/Hospice-Alzheimer-Patients-and.html.

"Medicare Hospice Benefits." Medicare.gov. Mar. 2000. Health Care Financing Administration, Department of Health and Human Services. 23 Jun. 2008 <http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf>.

"Medicare's Hospice Benefit for Beneficiaries with Alzheimer's Disease" [Medicare Topic Sheet]. Alz.org. Aug. 2004. Alzheimer's Association. 19 Jun. 2008 <http://www.alz.org/national/documents/medicare_topicsheet_hospice_benefit.pdf>.

Mitchell, Susan L., Dan K. Kiely, Susan C. Miller, Stephen R. Connor, Carol Spence, and Joan M. Teno. "Hospice Care for Patients with Dementia." Journal of Pain and Symptom Management 34:1(2007): 7-16.

Modi, Seema, Cassandra Moore. "Which Late-Stage Alzheimer's Patients Should Be Referred for Hospice Care." Journal of Family Practice 54:11(2005): 984-86.

"NHPCO Facts and Figures: Hospice Care in America." Nhpco.org. Nov. 2007. National Hospice and Palliative Care Organization. 19 Jun. 2008 <http://www.nhpco.org/files/public/Statistics_Research/NHPCO_facts-and-figures_Nov2007.pdf>.

Powers , Bethel Ann, Nancy M. Watson. "Meaning and Practice of Palliative Care for Nursing Home Residents with Dementia at End of Life." American Journal of Alzheimer's Disease and Other Dementias (2008): 1533317508316682v1.

"Respite Care Fact Sheet." Eldercare.gov. 6 Jul. 2005. Department of Health and Human Services. 20 Jun. 2008 <http://www.eldercare.gov/Eldercare/Public/resources/fact_sheets/respite_care.asp>.

Sabatino, Charles P., ABA Commission on Legal Problems of the Elderly. "10 Legal Myths About Advance Medical Directives." Abanet.org. N.D. American Bar Association. 23 Jun. 2008. <http://www.abanet.org/aging/publications/docs/10legalmythsarticle.pdf>.

Sacks, Oliver. Musicophilia: Tales of Music and the Brain. 1st. New York: Alfred A. Knopf, 2007.

"Ten Myths About Decision-Making Capacity: A Report by the National Ethics Committee of the Veterans Health Administration." Va.gov. Sept. 2002. National Center for Ethics in Health Care, Veterans Health Administration, Department of Veterans Affairs. 23 Jun. 2008. <http://www.ethics.va.gov/ETHICS/docs/necrpts/NEC_Report_20020201_Ten_Myths_about_DMC.pdf>.

Volicer, Ladislav. "Goals of Care in Advanced Dementia: Quality of Life, Dignity and Comfort." Journal of Nutrition, Health and Aging 11:6(2007): 481.

Wolf-Klein, Gisele, Renee Pekmezaris, Lisa Chin, Joseph Weiner. "Conceptualizing Alzheimer's Disease as a Terminal Medical Illness." American Journal of Hospice and Palliative Medicine 24:1(2007): 77-82.

LifeWire, a part of The New York Times Company, provides original and syndicated online lifestyle content. James Clyde Sellman is a freelance writer and editor in Newton, Mass., who specializes in a broad range of consumer health topics. His work has appeared in the Harvard Health Letter, Harvard Women's Health Watch, Revolution Health, Infertility Source and My Student Body.com.

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