Care Partner Information Sheet

End of Life Care

End-of-Life Care

As someone with dementia nears the end of their life, it can be difficult for care partners to provide all of the care that is needed. Hospice can help.

What is Hospice?

Hospice is special care for people who are dying. Care is provided by nurses, doctors, and others with special training. They can provide care at the person's home. Or, they can give care in a special hospice hospital. They focus on the whole person, including their physical, emotional, and spiritual needs. The goal is to keep the person comfortable in the last months and weeks of their life. This helps a person with dementia to enjoy the remainder of their life and also supports care givers.

What Hospice Can Do
Help plan and coordinate care.
Give care partners a break.
Make sure the patient is comfortable and pain free.
Provide emotional support for the family before their loved one dies.
Answer questions about death and dying.
Provide emotional support for the family even after their loved one has died - often for up to a year.

When to Consider Hospice

Your doctor can help decide if a person with dementia is ready for hospice, but you should starting thinking about hospice early. Consider hospice when a person with dementia can't do their day-to-day activities. They do not have to be bed-bound to get help from hospice.

It is better to start hospice care sooner, rather than later. It can improve comfort and pleasure with life for both patients and their families. Most insurance lans, including Medicare, cover hospice care for free. Your own doctor can give care along with the hospice staff.

Important Conversations

As dementia gets worse, it is hard for a person to think and talk. So before dementia gets too bad, you should talk to the person about important things. These are things like what kind of care they want, where they want to die, and any special wishes.

Talking about end-of-life issues is often hard, but it can bring peace of mind and reduce stress.

Topics for Important Conversations
What to expect as dementia gets worse
What type of care the person wants and doesn't want
Organ donation
Where the person wants to live and where they want to die
Funeral plans

Legal Documents Everyone Should Have
There are important documents (paperwork) that everyone should have. They help others to take care of you if you can't take care of yourself. If you move, make sure your documents are legal in your new state.

Type of Document
What It Is For
Power of Attorney
Names one person to manage your personal affairs and money if you can't do it.
Medical Power of Attorney
Names one person to make medical decisions for you if you can't do it yourself. Have an alternate person.
Mental Health Power of Attorney
Names one person to make mental health decisions for you if you can't do it yourself. Have an alternate person.
Advance Directives / Living Will
States what kind of medical care you want and covers things like whether you want CPR.
States what you want done with your money and belongings after you die.

Useful Websites 

Written by: Jane Mohler, NP-c, MPH, PhD and Lisa O'Neill, DBH, MPH, University of Arizona Center on Aging

Alzheimer's disease and Related Dementia ~ Care Partner Information
Edited by an inter-professional team from the University of Arizona Center on Aging, Alzheimer's Association - Desert Southwest Chapter and Community Caregivers

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UB4HP19047, Arizona Geriatric Education Center.  This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.