Minds Matter: How Dementia Patients Can Benefit From Hospice

Dementia is hard in so many ways on so many people. It’s frustrating, scary and emotionally draining for the people who have it, for their families and for their caregivers.

As hard as it is for everyone involved when dementia patients can’t express themselves or remember a loved one’s name, the most frustrating thing about the disease—and the scariest—is that these mental slips are only part of a disease that sadly can’t be cured.

Many people might not realize it, but dementia is not just a disease of the mind, but one that affects the whole body and can be terminal.  Last year, Alzheimer’s disease, the most well-known type of dementia, was the sixth-leading cause of death. It claimed more than 80,000 lives. Like other terminal patients, though, hospice can help people with dementia, comforting them and their families.

Getting dementia patients into hospice is sometimes hard. If people cannot or do not see them as dying, there is a roadblock to the best end-of-life care.

There are two problems that can keep people from thinking of dementia as terminal:

1. Dementia doesn’t look like dying. People diagnosed with dementia can live for many years, often in good physical health. The disease is slow and gradual, and families, caregivers and physicians can all have a hard time seeing the patient as dying “Dementia patients can get up and walk around and it seems like they’re full of life and could go on indefinitely,” says Dr. Erdman, Medical Director in Atlanta. “When you have these plateaus and slow declines, many people are unaware of how quickly the disease can progress.”
2. Even when dementia is recognized as incurable, people can have a hard time accepting it as a cause of death, and not just something that opened the door to other problems.

Despite these challenges, hospice care can benefit people with dementia and their loved ones. For patients, hospice can provide skilled care and special equipment. “Every system in the body is affected by dementia,” says Erdman. “Patients often have impaired immune systems and are prone to infection, and healing from things like bed sores can take longer. Hospice care can help manage these complications.”

Caring for a family member with dementia is both emotionally and physically taxing and can cause what Dr. Erdman calls caregiver burnout. But hospice can help even those who aren’t receiving care. “Respite care gives the family time off to recharge their physical and emotional batteries,” she says. “When you combine the skilled care, the provision of equipment and time off that hospice can provide, it gives families a lot of options for taking care of patients.”

Surveys of people who have had family in hospice care show:

• Almost 75% of families of dementia patients rated overall hospice care as excellent and identified fewer unmet care needs than did families of patients with cancer or other terminal diseases.
• Family members of dementia patients also reported fewer concerns with the quality of care, a higher rating of the quality of care and a better rating for the peacefulness and quality of the end-of-life stages than those who did not receive hospice services.

Dr. Erdman once had a patient who was recently retired from a highly technical job working in computers. “He was very bright, but things fell apart quickly and he began to have delusions,” she says. His wife couldn't bear the thought of putting him in a home, but once he was enrolled in hospice care, they were able to have skilled caregivers come right to their house so he could stay home with her.

After all the hardships and hurdles of caring for someone with dementia, thinking of them as dying can feel like giving up or betraying them. For Dr. Erdman’s patient—and all Crossroads’ patients—accepting the diagnosis as terminal allows patients and families to receive the comfort and care they deserve. In fact, it’s the opposite of giving up. It’s gaining hope.

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