Living with Advanced Dementia in Residential Care
A Consumer Guide
English (PDF) En Español (PDF)
This booklet is for family members, friends and caregivers of a person who has dementia. The purpose is to provide information about the best ways to offer comfort and the best possible quality of life for someone whose dementia is progressing.
The approach to care described here is called “palliative.” The goal of this care is to increase comfort and pleasure and reduce pain and suffering. Palliative care can be very helpful to those who have advanced dementia. Many people think that palliative care is only for people who are about to die. But that is not so. Palliative care helps people who have many types of serious injuries or chronic illnesses. It can be helpful for many months, or even years. Studies show that palliative care can help people who have advanced dementia. It is not about giving up.
This booklet is intended to help you bring the best possible quality of life for the person you care for who has dementia. For the person with even the most advanced dementia, comfort matters and is possible. The more you are able to share with staff about what the person you care for enjoys and is comforted by, the better. In turn, when there are signals that your relative is not comfortable, the focus should be on working with staff to figure out what is causing the source of their distress and taking the necessary steps to prevent or minimize it in the future. This is how to bring “person centered care” to someone with dementia.
For more information about this project, contact: Ann Wyatt AWyatt@cknyc.org.