A Decision Aid about Goals of Care for Patients with Dementia
Alzheimer’s disease and related dementias are leading causes of functional dependency and death. Over 5 million Americans currently suffer from dementia, and 1 million have advanced disease with loss of meaningful communication and total functional dependency. Family members make difficult choices on behalf of persons with advanced dementia. Common decisions include life-sustaining treatment, tube feeding, treatment of infections, and hospital transfer for acute illness. Treatments should align with goals such as prolonging life, maintaining function, or promoting comfort. Shared decision-making helps patients and families to prioritize goals in order to guide treatment. Decision aids improve shared decision-making by informing and framing choices for patients or families. However, few decision aids are designed for dementia. In the Goals of Care study, a team of investigators developed and tested a decision aid for surrogate decision-makers for patients with advanced dementia, and found it effective to improve quality of end-of-life communication for nursing home residents with advanced dementia, and enhance some elements of palliative care. The Goals of Care study was funded by the National Institutes of Health: National Institute on Aging R01AG037483 and K24AG033640. The funding source had no role in the design and conduct of the research, and does not directly endorse the decision aid.
How to use this decision aid:
If you are a health professional working with patients with dementia – this decision aid can help to prepare and educate families who must make health care decisions for people with advanced dementia. Encourage family members to view the decision aid before they have a care plan discussion or meet with the patient’s physician. Simply give them the link – https://www.med.unc.edu/pcare/resources/goals-of-care – or let them view it on a computer while visiting your office or nursing home.
If you are a family member for someone who has advanced dementia – you can listen to this decision aid anytime you are concerned about making treatment decisions. The information is designed to help you learn about goals of care decisions, and learn more about how to communicate with your health care providers about these decisions.