One diagnosis often surprises families when it qualifies a loved one for hospice care: dementia.
Many people associate hospice with illnesses that follow a rapid or more predictable decline, such as cancer, but dementia is also a terminal condition that can significantly affect quality of life and life expectancy.
“Alzheimer’s is often what people think of but there are several types of dementia,” said Susan Mott, director of patient care at Emmanuel Hospice. “It is a progressive disease that can look very different from person to person and often declines slowly over time. While memory loss is the most recognized symptom, dementia eventually affects the entire body.”
Mott said the disease can affect mobility, communication, swallowing, appetite and resistance to infections. Over time, patients may experience repeated falls, weight loss, increased confusion, agitation or more frequent hospital visits.
Because dementia often progresses gradually, Mott said families may not always recognize how much a loved one’s condition has changed until caregiving becomes overwhelming. A hospitalization, fall or infection can also trigger a sudden decline. Hospice teams trained in dementia care can help families recognize and respond to those changes quickly.
“Our team understands dementia and can make care easier,” Mott said. “We talk with families about what to expect, what is normal and how we can work together to handle these things. Beyond symptom management, we are always looking for warning signs of infections. We evaluate the home environment for safety. We help caregivers understand changes in nutrition, comfort and behavior, and serve as an extra layer of support.”
Mott emphasized that hospice care provides a team of professionals with providers, nurses, aides, social workers, spiritual caregivers, complementary therapy specialists, bereavement counselors and volunteers working together to support both the patient and the people caring for them.
Hospice nurses assess symptoms, provide education, coordinate the plan of care and help patients and families navigate changes throughout the illness. Hospice aides assist with bathing and personal care, while equipment such as hospital beds and wheelchairs may be provided to reduce physical and financial strain on loved ones. Services can also include emotional support, advance care planning and guidance through questions about the end of life.
One goal of hospice is to create more opportunities for families to focus less on caregiving and more on having meaningful moments together. At Emmanuel Hospice, patient wish experiences and complementary services such as music therapy help families reconnect in powerful ways.
“When our music therapists come in, we see patients with dementia who were struggling to form words suddenly sing at full voice and remember all the lyrics to a song,” she said. “Moments like that help families develop a positive core memory and think about what that person has meant to them their whole lives.”
Mott added that the ways hospice can provide relief for caregivers, many of whom become isolated as caregiving demands increase, cannot be understated.
“There can be a misconception that hospice is only meant for the final days of life and is sometimes perceived as ‘giving up’ on a person,” she said. “But one of the most common things we hear from families is that they wish they had reached out sooner because of the comfort, quality of life, dignity and support hospice care provided for everyone involved.”
Mott encourages families to ask questions early, even if they are unsure whether a loved one qualifies.
“It is never too early to call and ask about hospice care,” she said. “Even if it is not time for hospice care now, getting an assessment gives a baseline and helps us better understand what trajectory someone may be on. That also helps us get a relationship going, which makes the transition to comfort care happen more seamlessly when it is time.”
For more information, call 616.719.0919 or visit EmmanuelHospice.org.