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P2‐524: KEY ELEMENTS SUPPORTING RECRUITMENT AND RETENTION OF UNDERREPRESENTED GROUPS INTO RESEARCH: OUR EXPERIENCE IN THE AFRICAN AMERICAN COMMUNITY
Author(s) -
Carter Fabu P.,
Benton Susan Flowers,
Edwards Dorothy Farrar,
Blazel Hanna,
Harris Brieanna L.,
Lucille John,
Smith Tierra,
Green-Harris Gina,
Carlsson Cynthia M.,
Johnson Sterling C.,
Gleason Carey E.
Publication year - 2018
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2018.06.1218
Subject(s) - ethnic group , health equity , diversity (politics) , gerontology , population , feeling , health care , political science , medicine , dementia , psychology , public health , disease , nursing , social psychology , environmental health , pathology , law
care partner of a person with Alzheimer’s/another dementia); 2) multisensory enrichment group for person with dementia held in parallel with care partner support group; 3) early journey support group for persons with recently diagnosed mild cognitive impairment or early stage Alzheimer’s who attend with their primary family care partner (spouse and/or adult child); and 4) fronto-temporal dementia support group for care partners only. Groups lasts 90 minutes, are held weekly for 8-10 consecutive weeks, have 8-16 participants, and are led by licensed clinical social workers/counselors. Weekly sessions are guided by a unique handout that facilitates decompression (talking about experience of being a person with dementia or care partner), education (various topics addressing common cognitive, physical, and emotional challenges), problem solving (skills for addressing behavioral and psychological symptoms of dementia), and relationship building (strengthening relationships between person with dementia, care partner, and family members). After completing an 8-10-week support group, the person with dementia and their care partner have the opportunity for individual, couple, or family counseling. Care partners can also participate in a 90 minute monthly maintenance support group that focuses on decompression. The 8-10 week groups are offered three times a year and feed into the monthly group, resulting in a comprehensive and sustainable support group program for person with dementia and their care partners. Results: Over last 6 years, the usual attrition rate per group is 15-20%. Participants evaluate their support group experience when group ends. Over 90% rate the following as “5” on a Likert scale of 1 (not at all) to 5 (very much) for these measures: group met expectations, I felt safe and accepted, knowledge of dementia was increased, coping skills enhanced, and facilitators were knowledgeable/compassionate. Conclusions: A comprehensive, sustainable support group program for person with dementia and family care partners is feasible and beneficial. Challenges and future plans will be discussed.