LeadingAge New York Adviser Winter Vol. 1 | Page 50

Caring for Alzheimer’s
Patients at End of Life

There are more than 5 million Americans living with Alzheimer’s disease and it is the sixth leading cause of
death in this country. In fact, in 2014, 14.8 percent of patients admitted to hospice had a primary diagnosis of
dementia. Dementia is a group of disorders involving mental decline that typically interferes with activities of
daily living and affects at least one core mental function, such as memory, language, visuospatial or executive
functioning; Alzheimer’s disease accounts for 70 percent of all dementias.
Being a caregiver for someone with Alzheimer’s requires flexibility and patience. It can require making
changes in everyone’s lifestyles in ways that they don’t like and can’t imagine. As the abilities of a person
with Alzheimer’s change and functioning independently becomes more difficult, caregivers take on greater
responsibility. Sad to say, Alzheimer’s only gets worse. There will be good days and bad days, but the bad
days will get worse and the good days will become more and more rare. While it is important for everyone
to plan for the future, it is especially critical for those with an Alzheimer’s diagnosis to consider advance care
planning. Early planning allows the person with dementia to be involved and express his or her wishes for
future care and decisions. This eliminates guesswork for families, and allows for the person with dementia to
designate decision makers on his or her behalf. In addition to sharing the patient’s wishes with family, advance
directives should also be discussed with doctors and other health care providers to ensure they’re aware of
their patient’s wishes.
During the late stages of Alzheimer’s disease, the patient generally loses the ability to walk, speak and
even swallow. Since care needs are extensive during the late stages of the disease, this may mean moving
the individual into a skilled nursing facility where intensive, around the clock care can be provided.
Approximately 80 percent of all people with Alzheimer’s disease live in a nursing home. At this point in the
disease progression, the role as a caregiver can shift to focus on preserving quality of life and the dignity of the
individual.
For those dementia patients at end of life, hospice care is an option that promotes dignity and quality of life
by focusing on keeping the patient comfortable and pain-free until life ends naturally. Hospice includes an
interdisciplinary
team comprised of
physician, nurse,
social worker,
home health aide,
spiritual counselor
and trained
volunteers. They
work together
to address
the physical,
emotional and
spiritual care of
the person as well
as the family. Care
can be provided
at home or in a
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Adviser a publication of LeadingAge New York | Winter 2015