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No two individuals with Alzheimer's experience the disease the same way. People with Alzheimer's live an average of eight years after diagnosis but may survive anywhere from three to 20 years. In the disease's final stages, individuals lose the ability to respond to their environment, speak, control movement, walk without assistance and sit without support. Reflexes become abnormal and muscles grow rigid. In addition, swallowing can be impaired. Data from various studies indicate that:
67 percent of dementia-related deaths occur in nursing homes. 71 percent of residents with advanced dementia died within six months of admission to a nursing home, yet only 11 percent were referred to hospice care. Nonpalliative care is quite common in nursing home residents with dementia. This includes tube feeding, laboratory tests, restraints and intravenous therapy.
Quality end-of-life care for people with advanced dementia
involves a number of key elements, including appropriate management
of symptoms such as pain and behaviors, involvement in programs
like hospice care and decisions about medical interventions.
The body of evidence from research indicates that aggressive
medical treatment for nursing home residents with advanced
dementia is often inappropriate for medical reasons, has a
low rate of success and can have negative outcomes that hasten
functional decline and death.
Cardiopulmonary resuscitation (CPR) is three times less
likely to be successful in a person with dementia. Those
who initially survive are taken to an intensive care unit,
where most die within 24 hours. Individuals with advanced
dementia are hospitalized more often than those who are
cognitively intact or have milder dementia. The most common
cause of hospitalization for a person with Alzheimer’s
is pneumonia, even though immediate survival and mortality
rates are similar whether treatment is provided in a long-term
care facility or a hospital.
Long-term outcomes are better in residents treated in a
nursing home setting. Transfer from a nursing home to a
hospital can result in functional decline that does not
improve significantly at discharge. Individuals with Alzheimer’s
often fall or develop confusion and incontinence, symptoms
that tend to be managed by aggressive medical interventions.
Tube feeding of nursing home residents with advanced dementia
does not prevent malnutrition or risk of infection, nor
does it improve functional status, comfort or survival.
It also adds to Medicare costs because of expenses involved
with tube placement and hospitalization or emergency room
visits due to complications.
To improve end-of-life care for persons with advanced dementia,
the Alzheimer’s Association recommends expanding the
availability of palliative care for beneficiaries with advanced
dementia who opt for comfort care and support over aggressive
medical treatment. Specifically, policymakers should consider:
Eliminating fiscal incentives in Medicare and Medicaid payment policies that encourage hospitalization and tube feeding of nursing home residents. Authorizing payment of palliative care for beneficiaries with advanced Alzheimer's disease and or related dementia before they are eligible for hospice services provided by current Medicare eligibility criteria. Encouraging a national discussion among health care providers to develop consensus around optimal end-of-life care for residents with advanced dementia, to correct common misconceptions about the effectiveness of aggressive medial interventions in persons with late-stage dementia and to provide more accurate information about the natural course of death due to Alzheimer's disease.
Next: MEDICAID and LONG-TERM CARE
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Individuals with Alzheimer’s often fall or develop confusion and incontinence, symptoms that tend to be managed by aggressive medical interventions.
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