Connect2Caregivers: For Researchers

Mayo Clinic researchers are conducting a study titled Fostering Caregiver Connections via Intentional Technology Pairing for Caregivers of Patients with Alzheimer's Disease and Other Types of Dementia — Phase 2.

The study aims to:

• Optimize a profile questionnaire and matching algorithm developed in phase 1 of the study and implement it in a finalized website design.
• Determine if algorithmically matched participants have statistically significant increase in two areas:
  • Match satisfaction.
  • Self-reported sense of resiliency and quality of life compared with randomly matched caregivers.

Background

Behavioral health research has shown that peer-to-peer support is effective and leads to:

• Improved quality of life.
• More engagement with services.
• Improved health.
• Fewer hospitalizations.

Therefore, Mayo Clinic and MinnesotaHealth Solutions Corp. are collaborating to develop and test a unique matching service for caregivers of people with dementias such as Alzheimer's disease, Lewy body dementia and frontotemporal degeneration.

A key aspect of successful peer-to-peer support may lie in finding the "right" person with whom to interact. There is limited research on how to identify potential matches and connect people with others who can best provide the desired emotional support. Studies have shown that people feel more supported by others who have experienced similar situations. However, there may be other characteristics and qualities among caregivers that lead to successful and sustainable peer-to-peer connections.

In phase 1, the study team conducted an iterative set of focus groups to gather information from caregivers on desired matching criteria. The focus groups also tested a prototype website and profile questionnaire based on the desired matching criteria. In phase 2, the team built on the phase 1 website design and added multiple features needed for expanding to a production prototype, including scalability and additional security.

In phase 2, the research team is using the fully functional Connect2Caregivers website study with consented volunteers. The goal is to assess the website's efficacy in matching caregivers. We hypothesize that providing caregivers with a match based on the algorithm — versus a random match — will result in increased match satisfaction, resiliency and quality of life.

Study design

We aim to enroll 355 current or former caregivers of people with dementia in the study. Participants are randomized to be matched either via algorithm-based matching or random matching.

For both groups, a three-month waiting period after enrollment will measure caregiver well-being before being matched. This process means every participant acts as their own control — that is, every participant provides a gauge of "care as usual" before the matching intervention.

After the wait period, study participants are matched with up to five other caregivers. The study duration is 15 months, and measures are collected:

• At baseline.
• After an approximately three-month waiting period.
• At three and 12 months after participants are matched.

Volunteer population

We are recruiting people to participate in this study who are caring for or have cared for a family member with diagnosed dementia. There are no sex or gender restrictions, or exclusion based on race or ethnicity. Participants must be at least 18 years old.

The inclusion criteria are as follows:

• The participant must care for a person with one of the following forms of dementia:
  • Parkinson's disease.
  • Lewy body dementia.
  • Any frontotemporal lobar degeneration dementia.
  • Alzheimer's dementia.
• The participant must be a family member, relative, friend or other nonprofessional caregiver.
• The participant must identify as a care partner or caregiver who performs the following activities at least three days a week:
  • Has contact with the loved one with dementia in person or by phone.
  • Provides social support, emotional support or both.
  • Provides full or partial assistance with daily activities.
• All participants must have access to the internet.
• All participants must speak English.
• All participants must agree to participate in the 15-month study, which includes the following activities:
  • Completing questionnaires.
  • Having brief virtual interactions with the study coordinator on a quarterly basis.
  • Actively interacting with the website and potential matches.
• All participants must agree to follow-up contact throughout the duration of the study, which we expect to last three years.

The exclusion criteria are as follows:

• The caregiver is not able to provide consent.
• The caregiver was or has been in that role for less than three months.
• The caregiver is providing care in a professional capacity.

For more information, email connect2caregivers@mayo.edu.