pair 2 care: peer support for caregivers of black americans living with dementia

Conditions: Family Caregiver; Dementia; Peer Support

Summary: the purpose of this study is to test a peer support intervention for caregivers who are caring for a loved one living with dementia.

african americans are twice as likely to develop alzheimer's disease or a related form of dementia (adrd) than their white counterparts. these individuals are, however, more often diagnosed later, creating additional physical, spiritual, psychosocial challenges for both the person living with adrd and their family caregivers. african american adrd caregivers are therefore at greater risk for adverse physiological and psychological health effects of caregiving, including significant burden and stress. evidence suggests that peer to peer support using storytelling may be effective in assisting adrd caregivers with surrogate healthcare decision making, an important aspect of palliative care. access to and use of palliative care, a recognized approach to serious illness care symptom management, among african americans are low. the impact of this healthcare inequity further reduces the quality of life for african american adrd caregivers and subsequently their care recipients. prior approaches to serious illness care have failed to address the needs of african americans living with adrd from a palliative care perspective. this inability to meet their needs leads to increased unmet caregiver needs. peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision making burden within cultural groups such as african americans through cultural tailoring by promoting oral traditions, personal contact, and storytelling. our current study includes perspectives of lower socioeconomic status african american adrd caregivers who have expressed the need for person-centered, non-judgmental, on-demand, culturally congruent caregiving support for advance care planning and healthcare decision making. simultaneously, former caregivers retrospectively described perceived benefits of peer support while caregiving and their willingness to serve as peer mentors to current caregivers. additional data from healthcare provider and community stakeholders support the need and potential benefits of peer support for adrd caregivers. based on these preliminary findings, there is an urgent need and exciting opportunity to address the unmet palliative care needs of current caregivers through peer support. for this innovative project, investigators will use the experiential expertise of former caregivers to help current caregivers with advance care planning and healthcare decision making. the purpose of this project is to use a stakeholder-informed approach in further developing and pilot testing the co-created peer support for caregivers of african americans living with alzheimer's disease and related dementias (pair2care), a culturally sensitive caregiver peer support intervention. aim: conduct feasibility and acceptability testing of pair 2 care in current and trained former african american adrd family caregiver peers paired based on congruent identity traits (e.g., relationship to care recipient, gender identity, etc.). investigators will determine if pair2care is feasible and acceptable by evaluating satisfaction and appropriateness of the intervention for broader dissemination.

Eligibility criteria:
inclusion criteria: * african-american * english-speaking * adult (18+) * family caregivers of people living with dementia (current or former) exclusion criteria: * non-african-american * non-english-speaking * under age 18 * non-family caregiver

Keywords: african american/black