Alzheimer’s disease is a terminal illness. In fact, it’s the sixth-leading cause of death in the United States, and one in three adults older than 65 die with Alzheimer’s or another form of dementia, according to the Alzheimer’s Association.
But many families affected by Alzheimer’s don’t realize that hospice care is an option for their loved ones as they reach the late stages of the disease, said Dr. David L. Parks, hospice medical director for St. Elizabeth Healthcare.
Hospice isn’t just for cancer patients
“When you mention hospice, people’s first thoughts are toward cancer,” Parks said. All forms of cancer account for about 36 percent of hospice admissions nationally, according to the National Hospice and Palliative Care Organization in Alexandria, Virginia.
Alzheimer’s and other dementias made up just over 15 percent of the primary diagnosis for hospice admissions nationally in 2013, and it’s common for hospice patients with dementia to have another critical illness, such as heart failure or emphysema, Parks said.
Hospice provides options
Hospice can be provided at home, in a long-term care facility or in an inpatient setting. It provides an array of services for patients and families, including pain management, nutrition services, complementary care and help with personal care, including bathing. Patients and their families also have access to social workers and chaplains who can meet with them to work through complications and issues connected with grief and loss. Staff can also help families set up advance medical directives and make other end-of-life arrangements.
That kind of support is critical for caregivers, who may be overwhelmed by the demands of caring for a person with dementia, Parks said. That’s one reason why St. Elizabeth also offers short-term respite care for dementia patients, as well as inpatient services.
Hospice can be a helping hand
Studies have shown that dementia patients who receive hospice care have better pain control and are less likely to die in a hospital than patients who don’t get hospice care, Parks said, and St. Elizabeth Hospice, like many hospice programs, has nurses available around the clock to answer families’ questions or send help as problems arise.
A difficult decision
One barrier facing families and physicians in choosing hospice is that it’s difficult to predict how much longer a person with Alzheimer’s disease is likely to live. One of the criteria for getting Medicare or other insurance coverage for hospice care is a doctor’s determination that the patient will die within six months of admission if the disease follows its normal course.
With most chronic, terminal illnesses, doctors have ways of predicting what’s likely to happen next and in what time frame. That’s not an option for those with dementia at this point.
“There still isn’t a good way of predicting how long somebody with dementia is going to live,” Parks said. “There’s some science to figuring out if a person has six months or less to live, and there’s not a blood test or scan we can do for dementia.”
But there are other indicators that can determine eligibility for hospice care, he said, including:
- An infection, such as pneumonia, within the last six months
- Loss of speech
- The inability to walk, sit upright or hold a cup or other utensil
- Poor nutrition and weight loss
Hospice care is covered by Medicare and most private insurers. In most states, it’s also covered by Medicaid.
