Leading Dementia Advance Care Planning Conversations

  • STATUS
    Recruiting
  • End date
    Jul 1, 2023
Updated on 1 December 2021
dementia
Online studies
Accepts healthy volunteers

Summary

This study guides family members through the process of advance care planning conversations within the current or future context of memory loss or dementia. The study lasts 36 weeks and takes approximately 4 hours to complete.

Description

LEADing Dementia Advance Care Planning Conversations The purpose of this research study is to provide support and guidance for family members to have conversations about advance care planning within the context of current or potential future dementia. Advance care planning is the process that allows individuals to express their future health care values and preferences, so that these wishes can be enacted in the event that they become unable to participate in their own health care decisions. In the case of dementia, the person with dementia will likely lose the ability to make decisions about their own care due to the progressive memory loss associated with dementia. If you agree to participant in this study, you and a family member will participate in a study in which you will you be guided through the process of having conversations about advance care planning and completing advance care planning documents. The study consists of seven parts that will take approximately 4 hours total to complete over the course of the 36-week study: • Week 1 – Welcome: Study Consent & Informational Surveys (~30 minutes) • Week 2 – Activity 1: Advance Care Planning (~30 minutes) • Week 5 – Activity 2: Care Discussions (~1 ½ hours) • Week 8 – Activity 3: Sharing your Care Plans (~30 minutes) • Week 12 – Follow-up survey (~20 minutes) • Week 24 – Follow-up survey (~20 minutes) • Week 36 – Follow-up survey (~20 minutes) The study surveys focus on practical and personal outcomes of the study. Practical outcomes of the study include providing feedback about the study, your completion of an advance directive (with an option video-recording of conversations), and sharing your care planning documents with others. Personal outcomes of the study include providing feedback about your confidence in communicating advance care preferences and associated future decision-making regarding these preferences as well as your relationship quality with your family member. There will be no cost to you to take part in the research study. Your pair (you and your study partner) will receive a $150.00 gift card after completion of the Week 8 Activity and a $100.00 gift card after completion of the week 36 survey for a total of $250.00. The information gained from this study will help us to refine this study so that we can help support other families in advance care planning.

Details
Condition Memory Concerns, Alzheimer's Disease, Dementia, Healthy Volunteers, Mild Cognitive Impairment, Memory Loss
Clinical Study IdentifierTX284526
Last Modified on1 December 2021

Eligibility

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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