How can enrollment in a hospice program help in late stage Alzheimer's?

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American Hospice Foundation

Unfortunately, patients with end-stage Alzheimer’s disease often receive burdensome medical interventions of questionable benefit and suffer from inadequately controlled symptoms. One study showed that, although end-stage Alzheimer’s patients have four to five times the mortality rate after pneumonia or hip fracture of those without dementia, they receive the same amount of painful procedures, including daily needle sticks for blood work, placement of intravenous catheters, and painful injections of medicines. In this same study, Alzheimer’s patients were more likely to undergo placement of catheters into the bladder and placement of feeding tubes through the nose or surgically through the abdomen than patients who were not demented. In spite of the fact that tube feeding has not been shown to prevent aspiration (contents of mouth or stomach go into the lung), prolong survival, reduce infections, improve functioning, or increase patient comfort, persons with advanced Alzheimer’s disease undergo placement of feeding tubes at alarming rates. Tube-fed patients with Alzheimer’s disease and other dementing illnesses typically die within a year, have increased lung infections, and show increased agitation requiring more use of physical restraints and sedation, which in turn results in more instances of painful skin breakdown.

Hospice and palliative care can help address these issues for patients and their families.

Hospice care typically addresses directly what studies have shown patients with serious illnesses want (Singer et al, JAMA 1999; 281(2), 163-168):

Pain and symptom control
Avoid inappropriate prolongation of the dying process
Achieve a sense of control
Relieve burdens on family
Strengthen relationships with loved ones
Hospice care also addresses what family members and caregivers want (Tolle et al, Oregon Report Card 1999; www.ohsu.edu/ethics):

Loved one’s wishes honored
Inclusion in decision processes
Support/assistance at home
Practical help (transportation, medicines, equipment)
Personal care needs (bathing, feeding, toileting)
Honest information
24/7 access
To be listened to
Privacy
To be remembered and contacted after the death
Hospices stress excellent management of pain and other distressing symptoms; use an interdisciplinary care team comprised of a physician, nurse, social worker, nurse’s aide, chaplain, and volunteer, to comprehensively address all sources of suffering; and develop an individualized care plan focused on the needs of the patient and family rather than on the disease.

When should I call hospice for my loved one with Alzheimer’s disease?

When your loved one can no longer care for him or herself and has lost the ability to walk independently, especially if you are feeling stressed from caregiving, ask hospice to evaluate your loved one for admission. Particularly when your loved one has begun having choking episodes, is losing weight, or has had fever and infections, it is likely time to ask hospice for help.