LEAD Study
Life-Planning in Early Alzheimer's and Other Dementias
Have you noticed a change in your memory or thinking skills?
Have you been diagnosed with mild cognitive impairment or dementia?
Are you a family member of a person who has noticed a change in memory or thinking skills, or been diagnosed with dementia?
If you answered “yes” to any of the questions above, the LEAD Study may be right for you.
What is the LEAD Study?
The LEAD study is an advance care planning study. Advance care planning allows people to discuss, document, and share their wishes for end-of-life care. This is especially important for people with memory loss, and even more so for people who have been diagnosed with Alzheimer’s disease or another type of dementia because they will most likely lose their ability to make decisions.
Should a person lose their ability to make decisions, their care partner, usually a spouse/partner or adult child, is the one who will make the end-of-life decisions for them. These care partners are often unsure as to what the person would want, resulting in added stress, and often unnecessary and unwanted medical treatments.
The LEAD Study gives people a chance to plan for their future care, side by side with the person who may eventually need to make care and treatment decisions for them at the end of life.
Who Can Participate in the LEAD Study?
This study is for pairs (2 people). The first is the person who is experiencing changes in their memory or thinking skills, and the other person is a member of their family.
If you are the person with memory changes, you may be eligible to participate if:
• You are age 50+
• You have noticed changes in your memory or thinking skills
• You have been diagnosed with mild cognitive impairment, Alzheimer’s disease, or another type of dementia
• You are interested in engaging in conversations and documenting your desires for your future care
If you are a family member of a person experiencing changes in memory or thinking skills, or has been diagnosed with mild cognitive impairment, Alzheimer’s disease, or another type of dementia, you may be eligible if:
• You are the spouse/partner, child, or close family member
• You are age 18+
How Does the Study Work:
Participation in the study is free. You will use an internet webpage to access and complete four educational modules that will guide you through the process of advance care planning, including video-recording a conversation with your study partner about end-of-life care values and preferences. You will also answer surveys and provide feedback about the study. The entire study is spread over 20 weeks, but only takes about 6 hours of your time.
You can participate in the comfort of your own home using a laptop, desktop computer, Chromebook, or tablet that has a working microphone and camera. To access the LEAD website, you can use your preferred internet browser such as Safari, Google Chrome, Firefox, or Edge. Compensation is available for participation.
How To Participate
If you are interested in participating in the LEAD Study, please email us at lead@utah.edu
Contact Us
Email: lead@utah.edu
Call 801-587-7353
This study is conducted by Dr. Kara Dassel at the University of Utah College of Nursing (IRB_0013204)