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(Michael Mancuso/The Times of Trenton file photo)
By Amy Tucci
The recent death of Tom Magliozzi, co-host of NPR’s popular show “Car Talk,” from complications of Alzheimer’s disease, is a reminder that dementia is a terminal illness. While Alzheimer’s is just one type of dementia, it accounts for at least 60 percent to 80 percent of all dementia cases, according to the Alzheimer’s Association.
People don’t often think of Alzheimer’s as a terminal condition, but it is a crippling affliction that slowly robs the brain of its ability to direct normal bodily functions. Now the sixth-leading cause of death in the U.S., it accounts for more than 500,000 deaths each year, more than breast cancer and prostate cancer combined.
An unfortunate consequence of not recognizing Alzheimer’s as a life-ending illness is the missed opportunity to tap into the strong, established resource of hospice care, designed specifically to assist patients facing terminal illnesses and their families. Millions of people in this country, most often spouses or adult children, serve as caregivers for family members with Alzheimer’s disease. Often, this caregiving is physically, psychologically and financially draining. Hospice care, a Medicare benefit, can help.
Hospice is the model for compassionate care for people facing a life-limiting dementia illness such as Alzheimer’s. Hospice focuses on caring, not curing. Hospice care is most often provided in the patient's home, but it can also be provided in hospitals, nursing homes and other long-term care facilities. A family member or facility worker typically serves as the primary caregiver, and hospice staff make regular visits and are on call 24/7.
A growing number of older Americans in hospice care today suffer from Alzheimer’s and other dementias. In fact, for the first time, dementia is the leading non-cancer diagnosis for hospice patients. More than 15 percent of patients are admitted to hospice because they are dying from Alzheimer’s disease or dementia, according to the latest National Hospice and Palliative Care Organization’s “Fact and Figures: Hospice Care in America.”
In New Jersey, approximately 50 Medicare-certified hospices provide care every year to more than 30,000 patients with terminal illnesses such as cancer, heart disease and different forms of dementia. New Jersey hospice patients receive care for 63 days on average, according to the Centers for Medicare and Medicaid Services.
Still, considering that Alzheimer's deaths increased almost 70 percent between 2000 and 2010, too many caregivers are shouldering the burden alone. Either they don’t know that hospice care is available to them, because a medical professional failed to suggest it, or they are so buried with day-to-day care responsibilities that they do not have the time or energy to figure out if hospice may be the answer.
While hospice is a good fit for most families caring for people with terminal illnesses, it can be a particularly good choice of care for Alzheimer’s and other patients with dementia. Family members of someone with dementia grieve not only the loss of the person they know, but ultimately the death of someone they don’t know. Hospice care teams understand this special loss and are available for a year after the death to help family members cope.
It may be difficult to discuss the topic of hospice care, but it is important for family members to share their wishes long before it becomes a concern. Having this conversation early on can reduce stress when the time for hospice is needed. Receiving a diagnosis early means the conversation about end-of-life care can occur when the person is still able to participate.
Caring for a family member with Alzheimer’s or a related form of dementia is a reality for millions of Americans now. Hospice care may not be the right solution for every family, but it can lift a heavy burden off of a caregiver’s shoulders and help someone who is dying enjoy peace, comfort and dignity.
Amy Tucci is president and CEO of the Hospice Foundation of America.
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