Danger and Dementia: Caregiver Experiences and Shifting Social Roles During a Highly Active Hurricane Season

Abstract

This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer's or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004-2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.

Longitudinal Cohort Study of Depression and Anxiety Among Older Informal Caregivers Following the Initial COVID-19 Pandemic Response in Aotearoa New Zealand

“…Research following previous disasters has highlighted challenges that both formal and informal caregivers confront during and after disasters (e.g. Christensen & Castañeda, 2014 ; Gibson et al., 2018 ; Ozaki et al, 2017 ). A recent scoping review of this literature indicates mixed outcomes among informal caregivers, with challenges varying with care recipients’ needs, care arrangements, caregivers’ demographic characteristics, resource accessibility, social capital, and disaster agents ( Pickering et al, 2021 ).…”

COVID-19 Experiences of Relatives of Nursing Home Residents

“…No previous research has uncovered how the family relationship changed and impacted their interaction with nursing home residents during COVID-19. Previous literature regarding natural disasters described family caregivers’ reactions to and management of acute situations or short-term events ( Christensen & Castañeda, 2014 ; Gibson et al, 2018 ), while COVID-19 has presented a sustained period of crisis and restrictions. While family members adjusted habits and expectations after the immediate disruption of the lockdown, they still experienced continued stress and uncertainty, perhaps allowing time for prior family conflict to resurface.…”

“…Family members of residents of nursing homes are often omitted from research discussions, but in many cases have provided care for residents prior to their transition to the facility, and may still maintain expectations for being able to provide care and personal contact. After previous large-scale crises such as natural disasters, family members described balancing concern for their own safety as well as the safety of the resident ( Christensen & Castañeda, 2014 ), and noticed increased confusion and disorientation in residents with Alzheimer’s when their normal living routines were drastically altered ( Gibson et al, 2018 ). Family members’ own experiences have been affected by the ongoing pandemic itself, including their work and home lives, as well as by policies directed toward residents of nursing homes.…”

Disaster vulnerability of elderly and medically frail populations

“…Elders are also less likely to recover economically from the expenses related to the disaster, making them at high-risk for poverty. Abramson et al, 2015a;Abramson et al, 2015b;Ardalan et al, 2010;Benson, 2007;Christensen & Castaneda, 2014;DeVos, 2011;Durant, 2011;Fernandez et al, 2002;Fonseca et al, 2009;HelpAge International, 1999;Henderson et al, 2010;Hoopes-Haplin, 2013;Jhung et al, 2007;Lamb et al, 2008;Mokdad et al, 2005;Nicogossian et al, 2012;Pekovic et al, 2007;Powell et al, 2009;Prasad, 2012;Seplaki et al, 2006;Smith & Notaro, 2009;Zakour, 2015 Low education: Elderly or medically frail individuals who have a low education level are vulnerable in disaster due to their difficulty or inability to access quality information resources. Durant, 2011;Seplaki et al, 2006 Continued on next page:…”

“…Al- Rousan et al, 2014;Ardalan et al, 2010;Benson, 2007;Christensen & Castaneda, 2014;Clay et al, 2014;Durant, 2011;Lamb et al, 2008;Mayhorn, 2005;Mokdad et al, 2005;Pekovic et al, 2007;Smith & Notaro, 2009;Zakour, 2015 Sensory deficits: Sensory deficits hinder one's ability to see, hear, taste or smell, which can impair an individual's ability to see warning signs, hear emergency instructions and alerts, and navigate in unfamiliar environments. Individuals with sensory impairments are also more likely to eat contaminated or spoiled food during the disaster.…”