When should you call hospice for dementia?

Published: Thursday, April 25, 2024
Erin Farlow, RN
Hospice of NGMC Access Center

While it is always difficult to watch as a loved one’s health worsens at the end of life, it can be even more painful when someone you love has dementia. If you’re struggling with the challenges of caring for your loved one or his or her health is rapidly diminishing, hospice for dementia may help.

Unlike with many medical conditions, those who have dementia may thrive physically for years even as their minds are affected. Someone who has Alzheimer’s disease or another form of dementia may experience a gradual worsening of symptoms related to their cognitive health, including a loss of thinking, memory, and reasoning skills.

Even as a person’s mind slips, his or her body may seem physically OK. Gradually, though, dementia will cause physical symptoms as well, such as difficulty swallowing, an inability to combine muscle movements for basic actions like walking, stiff or weakened muscles, sleep problems, trouble controlling the bladder or bowels, and an increased risk of falling.

Many of these physical symptoms are considered indicators of the final stages of dementia, when hospice for dementia may be appropriate.

Signs hospice may be needed

Hospice is intended for those with a life expectancy of six months or less. Your loved one’s care team can use guidelines from the National Hospice and Palliative Care Organization along with their judgment to determine when it’s time for hospice and how your family can benefit.

How can you know when it’s time to seek hospice care for someone with dementia? The physical indicators of the disease’s progression are a good place to begin. As your loved one’s health worsens, it will become increasingly difficult to manage physical symptoms while not being able to communicate effectively with the patient in many cases.

While there are medications available to help slow the progression of dementia, at a certain point, the disease can progress to a point where medications may become ineffective and you may want to consider care to maintain quality of life rather than curative care. That’s where hospice for dementia can help.

The benefits of hospice for dementia

Caring effectively for someone who has dementia requires taking a number of steps to provide comfort and reassurance, along with relief of symptoms. That can be challenging—or even impossible—for a family caregiver, particularly as dementia worsens.

Hospice for dementia can help provide those essential tools, along with many other services that may benefit both the patient and his or her family. Hospice services can include nursing care, medical equipment or supplies, dietary counseling, the help of a hospice (or home health) aide, and other care designed to manage pain or other symptoms related to the end stages of dementia.

Because every patient is unique and the progression of dementia is unique for every patient, there are four different levels of hospice that can be used as needed: routine home care, continuous home care, general inpatient care, and respite care.

Both routine home care and continuous home care are services provided in the home setting, whether that’s the patient’s house, a skilled nursing facility, or an assisted living community. The difference between the two levels is that routine care is provided during set hours for patients who are in stable condition, while continuous care is used for longer periods of care when a medical crisis isn’t well-controlled.

If a patient experiences symptoms that cannot be managed at home, general inpatient care can be used to provide more intensive hospice services temporarily in an inpatient setting. Once a patient’s condition is stabilized, he or she can return to routine or continuous home care.

Respite care is also provided outside the home, and this type of care is unique in that it provides care for the caregiver, too. During respite care, hospice patients stay for a short time in a hospice facility or another setting outside the home to provide caregivers with “respite,” a short break from caregiving responsibilities. This type of care can be particularly beneficial for those caring for someone with dementia, which can be hard both physically and emotionally on caregivers.

Caring for someone with dementia can be difficult, and caring for someone with dementia in the end stages of life is even harder. Hospice care can make a tremendous difference.

A research study published in 2022 found that those with dementia who used hospice for at least one day in the final month of life experienced better end-of-life care than those who did not use hospice. Those who received hospice for dementia for 30 continuous days in the last month of life had the best transition to end of life, with family members reporting that their loved ones’ pain and other symptoms were properly managed and they received excellent care.

If you believe your loved one could benefit from hospice for dementia, talk with his or her care team about whether it’s appropriate. Hospice services are covered by Medicare and many other insurance providers and are designed to promote quality of life in the last days of life while also providing the grief support you need to handle the loss.

Learn more

Hospice of Northeast Georgia Medical Center partners with you and your family to provide excellent care and enhance your quality of life. Call 770-219-8888 or visit our website for more information about how we can help.