"Segurança na demência": uma intervenção on-line do cuidador

Experimental: Segurança na Demência

Safety in Dementia é uma ferramenta online que, passo a passo, orienta um cuidador individual nas decisões relacionadas ao acesso de armas de fogo para uma pessoa com demência. Inclui informações e uma comparação das opções e seus riscos e benefícios. Orienta o cuidador no esclarecimento de sentimentos e valores pessoais e na identificação da sua decisão/plano.

Comportamental: Segurança na Demência

Safety in Dementia é uma ferramenta online que, passo a passo, orienta um cuidador individual nas decisões relacionadas ao acesso de armas de fogo para uma pessoa com demência. Inclui informações e uma comparação das opções e seus riscos e benefícios. Orienta o cuidador no esclarecimento de sentimentos e valores pessoais e na identificação da sua decisão/plano. O grupo de controle visualizará a Lista de Verificação de Segurança Doméstica do Instituto Nacional de Envelhecimento.

Comparador Ativo: Controle da web

O grupo de controle visualizará a lista de verificação de segurança doméstica do National Institute on Aging Home.

Comportamental: Segurança na Demência

Safety in Dementia é uma ferramenta online que, passo a passo, orienta um cuidador individual nas decisões relacionadas ao acesso de armas de fogo para uma pessoa com demência. Inclui informações e uma comparação das opções e seus riscos e benefícios. Orienta o cuidador no esclarecimento de sentimentos e valores pessoais e na identificação da sua decisão/plano. O grupo de controle visualizará a Lista de Verificação de Segurança Doméstica do Instituto Nacional de Envelhecimento.

Preparation for Decision Making

The Preparation for Decision Making Scale assesses perception of how useful a decision aid is in preparing for subsequent decision-making. Scores range from 1-5, calculated from the sum of 10 constructs (each ranging from 1, 'not at all' to 5, 'a great deal'). The total score is calculated by first summing the 10 items and dividing by 10 to find an average item response score. Then, we subtract 1 from the summed score and multiply this by 25 to convert the final score to a 0-100 scale with higher scores indicating higher perceived levels of preparation for decision making (higher = better).

The scale has high test reliability (0.944) and discriminates significantly between different decision support interventions.

Decision Self-Efficacy

The Decision Self-Efficacy Scale measures confidence in ability to make decisions; transformed scores range from 0 (extremely low, worst outcome) to 100 (extremely high self-efficacy, best outcome).

Number of People With Dementia Who Retained Firearm Access

Firearm access for the person with ADRD will be assessed with scales we have used in prior work, allowing nuanced (but efficient) description of firearm access (on a scale ranging from access to multiple loaded firearms to no access to any firearms). For reporting and analysis, we will use binary categorization (caregiver reports that person with dementia still has access to 1+ firearm [1] versus person with dementia no longer has access to any firearms [0])

Number of Participants Who Took Action to Reduce Firearm Access for Person With Dementia

At each time point, participants self-reported if they have taken any steps to reduce firearm access for the person with dementia. Nine response options associated with this question are used to calculate this binary outcome (1+ actions taken versus no action taken). If they selected 'yes' to any of the following options, their outcome was '1+ action taken' (1); if they selected 'no' to all, their outcome was 'no action taken' (0). The nine response options were: (1) used a/more locking devices, (2) used a/more locking safes or gun lockboxes, (3) gave a/more guns to a trusted family member for temporary safekeeping, (4) gave a/more guns to a trusted friend for temporary safekeeping, (5) stored a/more guns at a store or range that has firearm storage, (6) stored a/more guns at a law enforcement agency temporarily, (7) gave a/multiple guns to law enforcement permanently, (8) sold, gave or transferred a/multiple guns to family or friends, and (9) sold a/multiple guns to the public.

Firearm Injury

We will assess injuries involving the person with ADRD and a firearm. Participants will be asked about any such incidents in the prior year (baseline) or since enrollment (follow-up) and a brief description.

Caregiver Burden

The short-form Zarit Burden Interview has scores ranging from 0-48, calculated from 12 items (measured on a 5-point scale from 0, never to 4, nearly always); scores range from 0 to 12 with higher scores reflecting higher burden.

Positive Aspects of Caregiving

The Positive Aspects of Caregiving Scale has scores ranging from 0-36, calculated from the sum of 9 items (measured on a 5-point scale ranging from 0, disagree a lot, to 4, agree a lot, on statements such as feel more useful), with higher scores indicating more positive caregiving experiences.