LEAD Study (Lucid Episodes in Alzheimer’s and Dementia)

Seeking Current Family Caregivers of Family Members with Alzheimer’s and Dementia.

To date scientists have very little understanding about lucid episodes in people living with later stages of Alzheimer’s Disease and Related Dementias (ADRD). There is little understanding about how or why some people, even after years of not communicating, suddenly communicate in meaningful ways. If you agree to participate you would be part of one of the first studies to try and understand these episodes.

There are two main aims for this study:

  1. To understand how often these episodes occur and if there are special circumstances present when they happen.
  2. To understand how family caregivers experience these episodes, what they think about them, if they change the way they approach their caregiving.

What will you be asked to do?

We are very interested in hearing from current caregivers, regardless of whether they have experienced a lucid episode.

  • Participants in this 12-month study will complete an online survey once a month for one year.
  • Each questionnaire will include questions about whether the person you are caring for is still living and whether you have witnessed a lucid episode in the past month.
  • Most monthly questionnaires are short (5-10 minutes); three questionnaires are longer (may take 20-30 minutes).

Who can participate?

Caregivers currently caring for someone with dementia and/or Alzheimer’s disease.

You may qualify if:

  • You are a current caregiver to someone with ADRD.
  • You are comfortable answering surveys online and using a secure website.
  • You are older than 18 years of age.

Potential benefits and risks:

Monthly surveys will provide time to reflect on your loved one’s wellbeing and the care you provide. Surveys may help participants process stress and increase their well-being.  Surveys include questions about decreased cognitive function and if the person with ADRD dies during the course of the study, questions about grief. These may make some participants sad. However the benefits of this research are likely to exceed these risks.
Each month you complete your monthly questionnaire, your name will be entered into a drawing for a
$100 gift card. We will randomly pick 3-5 caregivers a month to receive the gift cards.

For more information or to complete an eligibility Screening: