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LEAD Study

Life-Planning in Early Alzheimer's and Other Dementias

The LEAD Study is full and no longer looking for new participants. We will update this page with the results of the study and articles we publish, so please check back every few months to see what new information has been added. 

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.

Publications

Dassel, K., Aruscavage, N., Nachtweih, E., Supiano, K., Utz, R., Iacob, E., Clayton, J. (2023). LEADing Advance Care Conversations: Development of an Intervention Platform. Innov Aging, Dec 21;7(Suppl 1):47. https://doi.org/10.1093/geroni/igad104.0154. PMCID: PMC10735647 

Iacob, Dassel, K. B., Aruscavage, N. R., Clayton, J. L., Utz, R., & Supiano, K. P. (2023). Feasibility and Efficacy of the LEAD Dementia Advance Care Planning Intervention. Alzheimer's & Dementia, 19(S19).  https://doi.org/10.1002/alz.078422 

Clayton, J., Supiano, K., Aruscavage, N., Bybee, B., Utz, R.L., Iacob, E., & Dassel, K. (2024). Advance Care Planning in the Context of Dementia: Defining Concordance, The Gerontologist, 54(6).  https://doi.org/10.1093/geront/gnae029

Clayton, J. L., Utz, R. L., Aruscavage, N., Bybee S. G., Bigger, S., Iacob, E., & Dassel, K. B. (2024). Using community engagement with frame: Framework for reporting adaptations and modifications to evidence-based interventions.  Contemporary Clinical Trials Communications, 42, 101398.https://doi.org/10.1016/j.conctc.2024.101398

Dassel, K. B., Iacob, E., Utz, R. L., Supiano, K. P., & Fuhrmann, H. (2023). Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial. OBM integrative and complimentary medicine8(1), 26. https://doi.org/10.21926/obm.icm.2301004

Iacob, E., Utz, R., Supiano, K., Clayton, J., Aruscavage, N., Bybee, S., Bigger, S., Dassel, K. (2025). Exploring the feasibility of the LEAD trial: Online dyadic dementia care planning for early Alzheimer's and other dementias. American Journal of Hospice and Palliative Medicine, 10499091251379840. Advance online publication. https://doi.org/10.1177/10499091251379840

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)