An Australian-specific dementia and driving decision aid (DDDA) (Carmody, Traynor, Iverson, & Andrew, 2014) addresses the gap in available supportive resources for persons with dementia that encourages early planning for driving retirement (Andrew et al, 2015). This project presents the views of U.S. based persons with dementia, caregivers and practitioners on the suitability of the DDDA to a U.S. audience. This decision aid was developed by an interprofessional team, including the disciplines of law, medicine, nursing, occupational therapy, public health and psychology. The DDDA facilitates early discussions and planning for driving retirement as soon as individuals and/or caregivers and practitioners recognize problems with memory or cognition in drivers.
The development of a U.S. culturally relevant DDDA was the aim of this collaboration between Australian and American nurse educators and multi-disciplinary researchers whose work focuses on dementia family care giving and driving safety. To enhance the cultural relevance and effectiveness of this culturally relevant decision aid, consumer consultation was undertaken to ensure the adaptation is an evidence based intervention (Castro, Barrera, & Holleran Steiker, 2010).
Methods: This project presents the views of U.S. based persons with dementia, caregivers and practitioners on the suitability of the DDDA to a U.S. audience. Graduate nursing students are prepared to provide direct care for this population but little, if no, content about driving and dementia is currently included in graduate nursing education curricula in the U.S. This project provides evidence to support enhanced quality of person-centered care for persons with dementia. A purposive sampling strategy of U.S. practitioners, family caregivers and friends of persons with dementia was enhanced by snowball techniques and participants were recruited by email. Inclusion criteria were U.S. individuals who understood written English, had access to a computer and the internet, and had an association with persons with dementia. The survey was 32 pages long and included questions about participant demographics; three open-ended questions relating to views about the booklet; twenty optional contingency based questions to review each of the booklet and questions about contact details. The three open ended question items were: ‘What did you like about the booklet?’; ‘What would you change about the booklet?’ and ‘Do you have any final questions or comments to make about the booklet in general?’ Both Australian and U.S. university ethics boards approved the project.
Results: During 2016, a self-administered 36-item online Monkey-Survey of the Australian DDDA was completed by one hundred and forty-five adults. Data analysis consisted of descriptive statistics using Microsoft Excel version 14.0 (Microsoft Corporation) and an inductive content analysis was completed using NVivo Pro, version 11 (QSR International Pty Ltd.). One researcher coded the comments and categories were identified then repeatedly reviewed and refined (Silverman, 2011) and the research team generated consensus of themes identified.
Most participants (86%; n = 124) were female with a mean age of fifty-two years (range 19-80; SD = 12). Participants included practitioners working with persons with dementia (81%; n = 117); caregivers or friends of persons with dementia or memory loss (13%; n = 19); individuals who identified as other (4%; n = 6) and persons with dementia (2%; n = 3). Participants resided in twenty-two states of the U.S. Practitioners included occupational therapists, social workers, a kinesiologist and nurses. Three categories represented positive feedback including ease of use, easy format to follow and understand, and targeted consumer approach. Suggested changes included adapting U.S.-specific content, grammar and resources for referral. There was overwhelming support from participants for the use of the DDDA in the U.S. and they reported the need to include persons with dementia in early conversations about driving safety and the eventual decision to retire from driving.
Conclusion: It is imperative that advanced practice nurses in the U.S. perform comprehensive assessments of older adults, including sharing resources with persons with dementia and their caregivers (Pastor, Cunningham & Kuiper, 2015). The evidence from this project has been integrated in graduate nursing education, using an approach which begins the conversation about safety early, which identifies transportation alternatives, which engages the care giving team with the driver with dementia, and which uses community resources to promote community and personal safety and transition to driving cessation.
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