Hospice Care in Dementia: What Families Need to Know
- Amy Shaw, PA
- Sep 22
- 3 min read
What is Hospice Care?
When families hear the word hospice, fear and misunderstanding often follow. Many assume it means giving up, or that it is only for the very last days of life. In truth, hospice care is a specialized approach that focuses on quality of life, comfort, and dignity — and it can be one of the most compassionate supports available to families walking the dementia journey.
Hospice Care Defined
Hospice care is medical care that shifts its focus from curing disease to providing comfort. The team includes doctors, nurses, social workers, chaplains, aides, and volunteers who come together to support both the patient and the family. Hospice is not about stopping care — it is about changing the goals of care.
When Hospice Care in Dementia Begins
Families are often surprised to learn that hospice can begin months before death, not just in the final days. To qualify, patients must meet specific hospice criteria. For people with dementia, this usually means the advanced stage of the disease — when physical decline is more pronounced. Signs can include weight loss, frequent infections, reduced mobility and strength, or repeated falls. Just as important, families must also be “hospice-minded,” ready to allow nature to take its course while focusing on comfort and dignity.
What Hospice Care Provides
Hospice care offers:
Expert symptom management (for pain, agitation, shortness of breath, and more)
Medical equipment and supplies delivered to the home or facility
Personal care support from trained aides
Emotional and spiritual care for both the person with dementia and their family
24/7 access to care for triage and urgent needs. This does not mean 24-hour in-home care, but it does ensure that families are never left without guidance or support when they need it most.
Hospice Care in Dementia
For families caring for someone with dementia, hospice care can be life-changing. Hospice care in dementia helps manage unpredictable symptoms such as agitation, difficulty swallowing, or pain, and provides guidance to help caregivers avoid unnecessary hospitalizations. Most importantly, hospice care in dementia helps families shift their focus from doing “everything possible” to doing “everything meaningful.”
Hospice Care Is About Living Well
Choosing hospice care in dementia is not about giving up. It is about prioritizing comfort, dignity, and peace for your loved one — and support for you as the caregiver. In many ways, hospice allows families to reclaim precious time together, free from the crisis-driven cycle of hospital visits and invasive interventions.
Is It Time for Hospice Care?
If you are caring for a loved one with dementia and wonder whether it might be time for hospice, know that you do not have to make this decision alone. Hospice care does not require a referral from a healthcare provider — anyone can make a self-referral to hospice. Still, it is wise to speak with your healthcare team about whether hospice care could help your family.
For families in Wyoming and Illinois, I provide guidance and support through my consulting practice. If you live outside these states, your local hospice organization is a good place to begin the conversation.
The decision to enroll a loved one in hospice care is deeply personal and different for every family. It often comes with mixed emotions — relief that support is available, yet grief that the journey is entering its final stage. What matters most is choosing the path that brings peace, dignity, and comfort in the way that feels right for you.
"There is no right answer, only the answer that is right for you."
—
Amy Shaw, PA
Founder, Better Dementia
