Patient Comfort?

Studies of dying cancer or ALS patients with anorexia: Little hunger or thirst

Any thirst can be treated with mouth swabs and ice chips Sense of euphoria (endorphins)

Goes away if fed Patients were left alone more

Gillick MR. NEJM, 2000

Comfort?

Eating is pleasant! depriving a person (who wants to eat) of the

pleasure of eating does not increase comfort

Pulling out the tube Return trips to GI or IR Restraints

More stool and urine Caregiver burdens high

Finucane T et al. JAMA 1999

Slow hand feeding

Survival can be substantial despite emaciation and poor po intake

Human, nurturing, time for closeness with loved ones

Finucane TE, JAMA, 1999

Caregiver Stress

Why bother?

Caregivers are at higher risk for: Medical problems Depression and anxiety Financial problems

Dementia caregivers are especially challenged due to: Protracted length of time of caregiving Difficult behaviors Lack of appreciation from the patient Need for intensive involvement with the

patient

Why bother?

Supporting the caregiver helps the patient:Less depression Less agitated behavior

How to help?

Support groupsEducation about the disease and how to be

a caregiverAdult day careHospice (for patients with advanced stage)

Resources

www.alz.org (Alzheimer Association- education, info on clinical trials, local support groups, Safe Return program, much more)

www.alzbrain.org (State of Alabama Dementia Education and Training Act sponsored education site)

UAB Alzheimer’s Family Program (205) 934-2178 (one on one counseling, support groups)

www.alzca.org (Alzheimer’s of Central Alabama- info on clinical trials, adult day care scholarships, WanderGuard, local support groups)