Helen C Kales1, Laura N Gitlin, Barbara Stanislawski, Katherine Marx, Molly Turnwald, Daphne C Watkins, Constantine G Lyketsos. 1. *Department of Psychiatry, University of Michigan †Department of Veterans Affairs, HSR&D Center for Clinical Management Research (CCMR) ‡Geriatric Research, Education and Clinical Center (GRECC), VA Ann Arbor Healthcare System #School of Social Work, University of Michigan, Ann Arbor, MI §Department of Community Public Health, School of Nursing ∥Division of Geriatrics and Gerontology, School of Medicine ¶Center for Innovative Care on Aging, Johns Hopkins University **Department of Psychiatry and Behavioral Sciences, Johns Hopkins Bayview and Johns Hopkins University, Baltimore, MD.
Abstract
BACKGROUND/ OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are nearly universal in dementia and associated with multiple negative outcomes. Current real-world management is largely pharmacologic, despite poor risk/benefit. The WeCareAdvisor was designed to enable family caregivers to assess, manage, and track BPSD using nonpharmacologic strategies. DESIGN: In-depth qualitative data were collected from family caregivers of people with dementia to inform: (1) style of approach and "look and feel" of the tool, and (2) the types of psychoeducation most needed by caregivers. RESULTS: We conducted 4 focus groups and a technology survey (n=26) as well as additional individual semistructured interviews (n=12) with family caregivers. Main themes of the qualitative work included: (1) need to minimize difficulty and training time; (2) importance of "one-stop shopping" for information; and (3) necessity for information to be tailored to the caregiver and person with dementia. This information was then combined with effective existing evidence-based behavioral strategies to create a web-based tailored caregiver-support tool. CONCLUSIONS: The WeCareAdvisor was designed with input on functionality and content by end-users, family caregivers. The randomized controlled trial of WeCareAdvisor will test whether the tool improves outcomes including caregiver upset and burden and frequency and severity of BPSD.
RCT Entities:
BACKGROUND/ OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are nearly universal in dementia and associated with multiple negative outcomes. Current real-world management is largely pharmacologic, despite poor risk/benefit. The WeCareAdvisor was designed to enable family caregivers to assess, manage, and track BPSD using nonpharmacologic strategies. DESIGN: In-depth qualitative data were collected from family caregivers of people with dementia to inform: (1) style of approach and "look and feel" of the tool, and (2) the types of psychoeducation most needed by caregivers. RESULTS: We conducted 4 focus groups and a technology survey (n=26) as well as additional individual semistructured interviews (n=12) with family caregivers. Main themes of the qualitative work included: (1) need to minimize difficulty and training time; (2) importance of "one-stop shopping" for information; and (3) necessity for information to be tailored to the caregiver and person with dementia. This information was then combined with effective existing evidence-based behavioral strategies to create a web-based tailored caregiver-support tool. CONCLUSIONS: The WeCareAdvisor was designed with input on functionality and content by end-users, family caregivers. The randomized controlled trial of WeCareAdvisor will test whether the tool improves outcomes including caregiver upset and burden and frequency and severity of BPSD.
Authors: Lon S Schneider; Pierre N Tariot; Karen S Dagerman; Sonia M Davis; John K Hsiao; M Saleem Ismail; Barry D Lebowitz; Constantine G Lyketsos; J Michael Ryan; T Scott Stroup; David L Sultzer; Daniel Weintraub; Jeffrey A Lieberman Journal: N Engl J Med Date: 2006-10-12 Impact factor: 91.245
Authors: Constantine G Lyketsos; Maria C Carrillo; J Michael Ryan; Ara S Khachaturian; Paula Trzepacz; Joan Amatniek; Jesse Cedarbaum; Robert Brashear; David S Miller Journal: Alzheimers Dement Date: 2011-09 Impact factor: 21.566
Authors: Carl Eisdorfer; Sara J Czaja; David A Loewenstein; Mark P Rubert; Soledad Argüelles; Victoria B Mitrani; José Szapocznik Journal: Gerontologist Date: 2003-08
Authors: Courtney A Polenick; Laura M Struble; Barbara Stanislawski; Molly Turnwald; Brianna Broderick; Laura N Gitlin; Helen C Kales Journal: Dementia (London) Date: 2018-06-09
Authors: Quincy M Samus; Betty Smith Black; Diane Bovenkamp; Michael Buckley; Christopher Callahan; Karen Davis; Laura N Gitlin; Nancy Hodgson; Deirdre Johnston; Helen C Kales; Michele Karel; John Jay Kenney; Shari M Ling; Maï Panchal; Melissa Reuland; Amber Willink; Constantine G Lyketsos Journal: Alzheimers Dement Date: 2017-11-21 Impact factor: 21.566
Authors: Courtney A Polenick; Laura M Struble; Barbara Stanislawski; Molly Turnwald; Brianna Broderick; Laura N Gitlin; Helen C Kales Journal: Am J Geriatr Psychiatry Date: 2017-12-13 Impact factor: 4.105
Authors: Heather M Young; Janice F Bell; Orly Tonkikh; Tina R Kilaberia; Robin L Whitney; Jennifer M Mongoven; Benjamin M Link; Kathleen Kelly Journal: JMIR Form Res Date: 2022-07-13