Advance care planning is the process that allows individuals to express their future healthcare values and preferences so that these wishes can be honored if they become incapacitated and unable to participate in their own healthcare decisions. The care partners for persons with dementia, most often family members such as spouses/partners and adult children, are frequently tasked with making end-of-life decisions on behalf of the care recipient. The research team has developed a dementia-focused advanced care planning tool that may improve communication and understanding between people living with, or at high risk of, dementia and their care partners. This tool is called the Life Planning in Early Alzheimer’s and Other Dementias (LEAD) Guide.

What is the study about?

The aim of this online study is to test the LEAD Guide advance care planning tool for its usability, whether it improves decision-making self-efficacy, relationship quality, and feelings of wellbeing or anxiety, and whether it improves mutual understanding of the wishes of the person living with or at risk for dementia.

What is involved?

The LEAD intervention is designed to be self-administered and delivered through an interactive, web-based platform. Through three modules over the course of approximately eight weeks, the intervention will facilitate the advance care processes of 1) defining the care recipient care values and preferences, 2) developing a shared understanding of the care recipient’s values and preferences through conversation(s), and 3) encouraging ongoing ACP conversation and documentation that can be shared beyond the pair. Both the person living with or at high risk for dementia and the care partner will complete periodic questionnaires during the eight weeks, then again at 6- and 12-week follow-up periods.

Who can participate?

The study is looking for pairs – that is, both people living with or at risk for dementia and their care partners.

If you are the person who has changes with their memory or is in the early stage of dementia, you may join if you:

• Are age 50+
• Have subjective cognitive decline, mild cognitive impairment, or mild dementia

If you are the care partner, you may join if you are:

• Age 18+
• The spouse/partner, family member, or close friend

Study Site(s)

This study is virtual. No clinic visits are required, and volunteers can participate from anywhere.

Study Funder/Sponsor

The study is funded by the National Institute on Aging (NIA), an institute within the National Institutes of Health (NIH)

For more information, please email the study team at [email protected]