Advance Care Planning for People With Cognitive Impairment

What Is This Study About?

Advance care planning allows people to communicate their preferences about the medical care they receive at the end of life. This study will test the effectiveness of a program called Sharing Healthcare Wishes in Primary Care (SHARE) in improving the advance care planning process and communication among a patient, doctors, and caregivers. Participants with cognitive impairment and a family member or friend will be randomly assigned to receive either the SHARE program or enhanced care with print educational materials. Over two years, participants will complete surveys and telephone interviews about their experiences. The researchers will also collect information on the completion of advance directives.

Do I Qualify To Participate in This Study?

Must have:

Participant with cognitive impairment:

• English-speaking
• Able to provide informed consent themselves or through their legally authorized representative
• Has a family member or friend who plays an active role in care coordination or accompanies them to medical visits  
• Evidence of cognitive impairment (mild to severe), based on the results of a telephone screening interview

Family or friend of the person with cognitive impairment:

• 18 years and older
• English-speaking
• Hears well enough to communicate by telephone
• Attends at least some medical visits with the person with cognitive impairment
• No evidence of cognitive impairment, based on the results of a telephone screening interview

Must NOT have:

Participant with cognitive impairment:

• Plans to move out of state within the next year
• Receives no help with care coordination or primary care visits

Family or friend of the person with cognitive impairment:

• Plans to move out of state within the next year
• Diagnosis of a life-threatening illness
• Receives payment for care of the person with cognitive impairment

If I Qualify, Who Do I Contact?

Contact study personnel listed either under the general study contact or the location nearest you.

 

Where Is This Study Located?

Who Sponsors This Study?

Lead: Johns Hopkins University

Collaborator Sponsor

• Medstar Health Research Institute
• Johns Hopkins Community Physicians
• National Institute on Aging (NIA)

Source: ClinicalTrials.gov ID: NCT04593472