Development of the dementia community attitudes questionnaire

Abstract

Background What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine the extent of their success, inform needs for further intervention and, ultimately, shape policy. Objective To discover – or, if this could not be achieved, develop – a questionnaire measuring community attitudes towards people with dementia reflecting these newly recognised goals in terms of both content and expression. Methods A four-stage approach was used in this research: a scoping review of the literature, questionnaire development and expert review, questionnaire piloting, including with people living with dementia and their families, and preliminary psychometric testing. Results The review failed to retrieve a suitable existing questionnaire. A ten-item questionnaire, the Dementia Community Attitudes Questionnaire was developed, content validity was established by expert review and piloting led to refinements. Exploratory factor analysis ( N = 92) generated an interpretable three-factor solution. Cronbach’s alpha coefficient for Factor 1, Engagement, was good (0.855); for Factor 2, Challenges, and Factor 3, Decision-Making, reliability was acceptable (0.785 and 0.709, respectively). Conclusion Supporting people with dementia to sustain their quality of life requires new initiatives and suitable measures to evaluate their impact. The Dementia Community Attitudes Questionnaire was developed with input from people with dementia, their families, and relevant experts. Items reflect current opportunities for people with dementia to retain their independence, autonomy and community engagement for as long as possible. Following further psychometric testing, this new questionnaire may be useful to evaluate such initiatives.

Assessment tools for measurement of dementia-friendliness of a community: A scoping review

“…Four conflicts were identified at the full-text stage and a third reviewer was involved to resolve the conflicts. A total of 6 peer-reviewed articles were selected for final inclusion (Darlington et al, 2020; Fleming et al, 2017; Griffiths et al, 2018; Mitchell & Burton, 2006; Read et al, 2020; Wu et al, 2019) (Figure 1).

Figure 1.PRISMA diagram of scoping review process.

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“…The most frequent developers of tools were not-for-profit organizations (47.5%), followed by researchers (30%), and local government (22.5%). The development of the Dementia Community Attitudes Questionnaire ( Read et al, 2020 ) was guided by the tripartite model of attitude ( Breckler, 1984 ; Rosenberg, 1960 ). An existing theory or framework was not reported to have guided the development of any other of the tools identified.…”

“…After the consultations, people living with dementia were engaged throughout the development of items and piloted the tool. Fourteen of the tools ( Alzheimer Society of British Columbia, 2016 ; City of New Westminister, 2016 ; City of North Vancouver, 2016 ; City of Richmond, 2019 ; Community Partners in Action Innisfail, 2020 ; Darlington et al, 2020 ; Dementia-Friendly Rotorua Steering Group, 2017 ; Dementia Australia, 2018 ; Fleming et al, 2017 ; Hamilton Council on Aging, 2020 ; Read et al, 2020 ) were developed based on existing tools and relevant research and involved people living with dementia in the review of drafts. Six of the tools ( ACT on Alzheimer’s, 2015 ; Griffiths et al, 2018 ; National Alzheimer’s and Dementia Resource Center, 2019 ) did no engage people living with dementia in tool development.…”

“…Only three tools ( Fleming et al, 2017 ; Griffiths et al, 2018 ; Read et al, 2020 ) had validity and reliability information available. None reported responsiveness to change.…”

“…Inter-rater reliability ranged from r = .65–.90 and internal consistency from α = .59–.82. Read et al (2020) reported internal consistency of three factors (Engagement = α 0.855; Challenges = α 0.785; and Decision-making α = 0.709). An expert reference group assessed the content validity of Read et al’s (2020) scale, and face validity was assessed by asking participants (including people living with dementia) if the questions were acceptable and easily understood.…”