INTRODUCTION

The cognitive impairment and behavioral disturbances accompanying dementia can impair individuals’ ability to safely operate a car or be home alone; these issues may also increase risk of firearm injury or death, for both persons with dementia (PWD) and caregivers.1 Healthcare providers have a recognized role in providing guidance related to both driving and home safety, and materials for providers2 and the public3, 4 exist. Although firearm access in dementia has received increasing attention recently,5, 6 it is unknown whether caregivers of PWD need or want help on this topic, nor is it known how resources on firearm safety compare with driving and home safety for PWD and their caregivers.

METHODS

We conducted an anonymous internet survey with a convenience sample of family members, friends, or other caregivers (hereafter referred to as “caregivers”) of PWD (2/2018–10/2018). Eligible participants were English-speaking adults who self-identified as having been a family member, friend, or other caregiver for an individual with dementia within the last 5 years. They were recruited through advertisements on social media, the Alzheimer’s Association Trial Match, and a dementia clinic. Because this was a voluntary opt-in survey with advertisements for recruitment, data on non-participants are not available. Participants entered responses directly into REDCap. The Colorado Multiple Institutional Review Board approved this study. Analysis included basic descriptive statistics and review of written comments.

RESULTS

Eighty-two caregivers in 26 states completed the survey (67% female, 78% white, mean age 54 years). The PWD they cared for (48% female, 79% white, mean age 78 years) mostly lived at home, either alone (17%) or with other people (57%); 36% of caregivers lived with the PWD. Caregivers reported that 20% of the PWD drove, 45% stayed home alone at times, and 24% had a firearm in the home (45% with PWD as gun owner). The majority of caregivers identified driving (81%) and home safety (79%) as prior, current, or future issues they needed to address with the PWD; 38% identified firearms as such an issue (Fig. 1). Among the 20 caregivers who had already addressed access to firearms in the PWD’s home, 50% had left the guns in the home but had locked (n = 7), unloaded (n = 5), and/or disabled (n = 2) them; 40% had removed them from the home to give them to a trusted person (n = 7) or law enforcement (n = 2) or to sell them (n = 1). Only 9% had spoken with a healthcare provider for advice on firearm safety, compared with 32% who had done so regarding driving and 38% regarding home safety (38%). When asked about “preferred sources of information,” most desired information on the internet (written information and videos), healthcare providers, and national and local organizations related to aging and dementia. Only 12% said they had the necessary information about firearms; one caregiver commented: “The internet was very helpful in all areas, except firearms safety. In fact there was nothing available concerning firearms safety anywhere. It’s just not discussed at all.”

Figure 1
figure 1

Caregiver views on safety topics to address in context of dementia ( Figures 1 contains poor quality of text inside the artwork. Please do not re-use the file that we have rejected or attempt to increase its resolution and re-save. It is originally poor, therefore, increasing the resolution will not solve the quality problem. We suggest that you provide us the original format. We prefer replacement figures containing vector/editable objects rather than embedded images. Preferred file formats are eps, ai, tiff and pdf."Figures 1 please confirm if captured correctly.I understand - I will submit the original filen= 82). More than one response allowed per participant (e.g., “currently addressing” and “will likely need to address in the future”).

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DISCUSSION

Although exploratory and small in scope, this survey provides important new information about the experiences and needs of caregivers of PWD as related to safety topics. As expected, driving and home safety concerns were nearly universal, but concern about firearms was also common: half of caregivers identified firearm safety as an issue to address and a quarter of PWD were reported to live in a home with firearms. Healthcare providers were identified as a preferred source of information more commonly for driving or home safety than firearms, perhaps because conversations about firearms are less commonly initiated by physicians (despite support from national organizations for them to do so), and/or less commonly initiated by PWD and their caretakers. Larger scale studies to better explore firearm storage and discussions in this population will be important to understand the general patterns of firearm access among PWD, including changes over time and the needs of PWD and their caregivers. Future work to better understand the impediments to engaging in conversations about firearm safety with PWD and their caregivers is an important first step towards developing, refining, and disseminating acceptable and effective approaches to enhancing the safety of PWD and those around them while still acknowledging their rights and identities.