Become a Volunteer Join HopeHealth in Massachusetts as a pet therapy or music volunteer! Spread love and comfort to those in need. Learn more.

Starting hospice care: What families coping with dementia should know

People can live with Alzheimer’s disease or other form of dementia for years after being diagnosed. In fact, other physical health concerns may worsen at a faster rate because the loss of the ability to think and function is so gradual.

Enrolling those in the later stages of the disease on hospice service gives patients and families an extra layer of support and the time to focus on what is most important to them.

In addition to a board-certified physician medical director, nurses and hospice aides, a hospice care team includes a licensed medical social worker to assist with logistical and emotional challenges and an interfaith chaplain to provide spiritual support. Hospice care helps caregivers too with a variety of educational, emotional and spiritual support services, including Medicare-covered respite.

But, like so many aspects of dementia, things can get complicated. There are criteria that must be met in order to be declared eligible for hospice care. Becoming familiar with what clinicians are looking for will help families be better prepared to navigate end-of-life decision making about the care their loved one with dementia receives.

In order to be eligible for hospice service, a patient must have a terminal illness and a life expectancy of six months or less if the disease runs its natural course.

How to tell when it’s time for end-of-life transition?

A patient with Alzheimer’s disease or other dementia is generally considered in the terminal stage of their illness when they are:

  • Unable to move from bed to chair or walk to another room without help
  • Dependent on someone else for bathing, dressing and feeding
  • Incontinent
  • Limited to six or fewer intelligible words when they speak
foreground focus on old man's hand on bedrail
A patient must have a terminal illness and a life expectancy of six months or less to be eligible for hospice care.

Normally, clinicians are looking for evidence of weight loss, infections and decline in their patient’s medical condition over the past year. So be sure to mention recent changes in health status when meeting with your loved one’s health care provider, Lisa says.

There are other considerations. Clinicians are also looking for other health problems that affect the hospice eligibility of a person who has dementia — they may refer to these problems as “comorbidities” — including heart disease, COPD, stroke and cancer.

“Although dementia is a terminal diagnosis in late stages, in many cases, a person living with dementia becomes eligible for hospice with a terminal diagnosis other than dementia,” Lisa says.

Hospice services are covered under most insurance plans. For those without insurance who cannot afford the cost of end-of-life care, HopeHealth maintains The Hope Fund to cover these expenses. After six months on hospice, a patient can continue to receive the benefit as long as a hospice doctor certifies that they are still terminally ill.

When HopeHealth enrolls a hospice patient who has dementia, the person is connected to our Circle of Love Dementia Care program, which provides a holistic approach to bringing joy and comfort to hospice patients living with dementia. Specialized services for caregivers include resources, support groups and the opportunity to connect with volunteers who can help with brief respite breaks.

Receiving hospice services as early as possible provides the greatest opportunity to ensure a patient remains comfortable as their needs increase.

To learn more about our hospice services, please call 844-671-4673 or email Info@HopeDementia.org. You can also visit HopeHealthCo.org.

Back to top