Geri Hall, PhD, ARNP, GCNS-BC, FAAN
One of the issues I dealt with almost daily is
the one of when to begin palliative care. For those
who don’t know the term, palliative care means that
the focus of the care of your loved one shifts from
trying to maintain life as long as is humanly
possible (families often believe they will be seen
by family or God as “giving up”) to the focus of
promoting function, comfort, and quality of life. At
the end stages of the disease, this usually involves
a hospice referral.
Palliative care requires the family/care
provider acknowledge a few things:
- The acknowledgment that Alzheimer's
disease is chronic (long-lasting) and eventually
- That the patient's level of disability and
discomfort will at some point exceed their
quality of life.
- The concern that the patient's physical,
emotional, and spiritual comfort are the most
important things—even when a doctor says "We
- That only the people empowered to decide for
the patient can really evaluate what is best for
the patient in light of what the patient would
- That life is finite (has an end).
Palliative care is not necessarily
something that happens at the end of life. Many
families take a palliative care approach as soon as
the diagnosis is made by doing the following:
- Making sure the patient is free of pain.
- Making sure the patient participates in
social, family, and individual activities.
- Trying to avoid behavioral outbursts by
managing fatigue, changes in routine and the
environment, inappropriate stimuli, etc.
- Treating depression assertively.
- Taking preventive health measures such as
flu shots, medication administration, hand
washing, encouraging/participating in exercise,
- Allowing the patient to eat what they like.
- Finding communication strategies that do not
correct, but communicate respect.
- Paying attention to safety in the least
- Trying to prevent acute hospitalization,
non-essential surgeries, etc. The American
Association of Medical Directors (of long term
care programs) is now proposing citing
facilities who have too many hospitalizations
and transfers to other facilities or within a
facility. The idea is that once you are living
in a facility, you should be there for life.
- Attending educational seminars and caregiver
- Having the caregiver take care of themselves
and encouraging treatment for depression.