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2020 Alzheimer's Association Research Grant (AARG)

End of Life Care Planning Intervention

Can a web-based tool help in end-life-care planning intervention in individuals with Alzheimer’s and all other dementia?

Kara Dassel, Ph.D.
University of Utah
Salt Lake City, UT - United States


Discussing end-of-life wishes with family and care team can be emotional and difficult for individuals with Alzheimer’s and all other dementia. Alzheimer’s is a progressive brain disease and as a result, individuals with Alzheimer’s may lose the capacity to make decisions as the disease advances. This could result in family caregivers making end-of-life decisions. As a result, Dr. Kara Dassel believes that it is important that end-of-life wishes be communicated with one’s spouse/care partner and doctor in the early stages of Alzheimer’s. This may help the caregivers and doctors understand the preferences of the individual with Alzheimer’s, in advance to ensure that their wishes are met.

Research Plan

Dr. Kara Dassel and her team have developed a paper-based set of tools for helping people with early-stage Alzheimer’s and dementia plan for their end of life. The tool is called the Life-Planning in Early Alzheimer’s and Dementia (LEAD) Guide, that aims to facilitate conversations, documentation and sharing of care planning ideas between a caregiver and the person with cognitive changes. The researchers will refine and test the efficacy of the tool by adapting it to a web-based platform. They will then recruit 60 individuals at risk of or in the early stages of Alzheimer’s or other dementia and their family caregivers. They will administer the LEAD Guide intervention to the participants and then study whether the program is user-friendly. In addition, the researchers will assess whether the intervention is effective and feasible to facilitate dementia-focused advanced care planning.


If the results of this study are successful, the LEAD Guide intervention could be tested in larger studies to understand it’s use and implications for diverse populations. Ultimately, such work could identify a cost-effective method for enhancing care quality, efficiency and expanding support for individuals with Alzheimer’s and all other dementia as well as their families.

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