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Abstract
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INTRODUCTION
Unintentional and intentional (e.g., suicide) injury and death are risks among individuals with cognitive impairment. Firearm access is a particular concern for individuals with Alzheimerʼs disease and related dementias (ADRD), given firearmsʼ lethality. The convergence of increased rates of ADRD, associated injuries,1 and firearm ownership represents a public health concern,2 with firearms present in an estimated 40% to 60% of homes of people with ADRD. Although existing literature addresses safety in dementia,3-5 there is a paucity of practical tools for ADRD caregivers regarding firearms access.
Decision aids (DAs) support patient‐centered decision‐making by presenting available options--their benefits, risks, and areas of uncertainty--in an unbiased fashion. DAs also draw on individual values, beliefs, and preferences to facilitate discernment and action.6 "Safety in Dementia" (SiD) (www.safetyindementia.org) is an online DA designed for ADRD caregivers (or individuals with mild ADRD) to support decision‐making surrounding firearm access for a person with ADRD. Additional decisions, added later in the development process based on stakeholder feedback, are "When is it time for the person with ADRD to stop driving?" and "What else can I do to improve home safety?" The goal of SiD is to improve knowledge, preparation for decision‐making, action planning, and health‐promotion behaviors to prevent injuries or death among people with ADRD and those around them.
METHODS
SiD was developed through iterative refinement based on feedback from stakeholder interviews and focus groups (October 2018 to October 2019) with: medical providers (geriatricians, neurologists); dementia caregivers (previous or current); firearm owners; members of dementia/ADRD organizations; and professionals (gun shop owners, lawyers, and medical reporters who work on firearms and dementia). Participants were recruited via the research teamʼs networks, social media advertisements, snowball sampling (i.e., through contacts suggested by interviewees), and postings on the Alzheimer Associationʼs Trial Match registry and ResearchMatch. Telephone interviews sought input on the educational needs, language, messaging, design, and implementation of the prototype tool. Interviews were recorded with permission, professionally transcribed, and coded for qualitative analysis. Interviewees received a $25 gift card after completing an online survey to assess SiD acceptability using standardized measures.7
SiD was designed to address decisional needs and facilitate decision quality (i.e., alignment of decisions with the values of well‐informed caregivers), while encouraging movement from precontemplation to contemplation and/or action.8 Weekly development meetings reviewed stakeholder feedback, resulting in iterative refinement of SiDʼs content, design, structure, organization, and layout. A third‐party usability testing service evaluated site stability, workflow, and logic.
RESULTS
Over the course of SiD development, participants completed interviews (n = 24) or joined focus groups of older veterans (n = 7) or ADRD caregivers (n = 12). Participants were predominantly white (n = 19) and female (n = 16) and represented various stakeholder groups, including: those with personal/professional experience with ADRD (n = 12), firearms owners/enthusiasts (n = 5), and healthcare professionals (n = 7).
After early interviews and team discussions, the decision was made to focus on ADRD caregivers, with the potential for them to involve individuals with early or mild ADRD in decision‐making. A public‐facing website was created to optimize usability and acceptability, albeit with recognition that some priority populations may lack internet accessibility. We included information about driving and general home safety to make the tool useful to a broader audience of caregivers, enhance acceptability of firearm safety messaging (by contextualizing it with other safety topics), and acknowledge similarities in decision‐making across the topics of firearms, driving, and home safety (Table 1 provides further descriptions). Content for the driving and home safety sections was largely based on an existing
Language: en |