VoiceMyChoice: Enabling Persons with Dementia to Express Preferences

DESCRIPTION (provided by applicant): The concept of Person Centered Care (PCC), driving much of the efforts for quality improvement in dementia care, is predicated on the ability of persons providing care to know and understand the desires of persons withdementia. A challenge exists for PCC in situations in which the person with dementia is unable or unwilling to express verbally their preferences or choices. This, in turn, can have a critical and detrimental impact on the person's Quality of Life (QoL). There is, therefore, a need for effective tools that enable persons with dementia to more effectively express their choices to professional and family caregivers. Recent research by Dr. Michelle Bourgeois and her colleagues reveals that procedures and materials to enable such communication have the potential to be adapted for eliciting responses from persons with dementia about a range of QoL indicators (e.g., pain ratings, food and activity preferences, advance directives, end of life choices). The purposeof this Phase 1 feasibility study is to build on this research by creating the prototype for VoiceMyChoice , which will include cue cards (pictures with written labels) for caregivers to verbally, prompt the resident to talk about QoL topics. In addition,a Preference Questionnaire designed to assess QoL issues relevant to persons with dementia living in long-term care will be created for use as a primary outcome measure. Additionally, to address PCC issues related to ethnicity differences of persons withdementia, supplemental materials for Hispanic, Asian, Jewish, and Muslim residents will be developed in Phase 2. At baseline, members of 60 nurse assistant-resident dyads will be given a verbal administration of the Preference Questionnaire by research staff. Next, experimental group nursing assistants (30) will use VoiceMyChoice to prompt the resident to sort labeled picture cue cards (specific exemplars of QoL topics) into rating categories for 10 minutes, then the Preference Questionnaire will be re-administered to dyad members. Control group nurse assistants (30) will engage the resident in a card game for 10 minutes, with the Preference Questionnaire being administered before and after the control condition. It is hypothesized that convergence betweenmembers of NA-resident dyads will increase from pretest to posttest for Preference Questionnaire items for dyads in the VoiceMyChoice condition compared to responses of Control Condition dyads. Also, each dyad will repeat these same procedures after 7 days to examine the consistency of expressed preferences in each condition, and whether convergence between NAs and residents in dyads increases over time in the VoiceMyChoice condition. Finally, in each of the two conditions, half (15) of the nurse assistants will be non-native speakers of English. It also is hypothesized that non-native English speaking NAs will show better convergence with resident's responses over time in the VoiceMyChoice condition compared to the control condition. PUBLICHEALTH RELEVANCE: Improving the quality of dementia care requires that caregivers know and understand the desires of persons with dementia. It is, therefore, challenging when persons with dementia are unable or unwilling to verbally express their preferences or choices. This project is relevant to public health in that it will lead to the development of accessible and effective materials and procedures for improving the ability of a large and growing number of persons with dementia to express their wants, needs and preferences to those providing care.