Caregivers with Visual Impairments: A Preliminary Study

Abstract

Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, informal caregivers are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the medical and social states of the recipients of care (Ankri, Andrieu, Beaufils, Grand, & Henrard, 2005). Traditionally, persons with visual impairments have been thought of as recipients of care. However, as the U.S. population ages, many persons who are elderly and visually impaired may be providing care for others. Decreased visual acuity reduces the ability of individuals to care for themselves and others (Stevenson, Hart, Montgomery, McCulloch, & Chakravarthy, 2004). Approximately 3.4 million Americans have some type of visual impairment, and 1 in 28 Americans aged 40 and older is affected by low vision (Gohdes, Balamurugan, Larsen, & Maylahn, 2005). That number is expected to increase significantly as the U.S. population ages because the prevalence of ocular diseases that cause visual impairment increases significantly with age (Gohdes et al., 2005). About 125 million persons in the United States were living with chronic health conditions in 2000, a number that is expected to increase to about 157 million by 2020 (Anderson & Knickman, 2001; Rundall et al., 2002). Pandya (2005) estimated that approximately 44.4 million persons provided informal care to adult family members with chronic illnesses or physical disabilities during a one-year period. These caregivers help their family members remain at home by providing assistance with such things as bathing, preparing food, eating, managing money and medication, traveling for medical appointments and other activities, and safely transferring their family members from a bed to a chair or wheelchair. Although informal caregivers are unpaid, the value of informal caregiving has been estimated to be upward of $257 billion annually (Arno, 2002). Persons who are visually impaired experience a decreased ability to observe visual information and may have a reduced quality of life and limitations in functional activities (Chakravarthy & Stevenson, 2005; Hassell, Lamoureux, & Keeffe, 2006; Knudtson, Klein, Klein, Cruickshanks, & Lee, 2005; Lamoureux et al., 2007). Common functional problems that are associated with vision loss include significant difficulty reading small print and reading and writing checks; decreased facial recognition; a decreased ability to gather, store, and retrieve information; a decreased ability to administer medications; decreased mobility; a greater risk of injury resulting from falls; the inability to drive; and problems with shopping, cleaning, grooming, and other tasks that are dependent on vision (Bailey, 1988; Bullimore, Bailey, & Wacker, 1991; Cahill, Banks, Stinnett, & Toth, 2005; Klein, Moss, Klein, Lee, & Cruickshanks, 2003; Park, 1999). Numerous studies have shown that caregivers have high levels of stress and physical and psychological morbidity (Beach, 2005; Buck et al., 2000; Hirst, 2005; Mafullul & Morriss, 2000; Navaie-Waliser et al., 2002; Navaie-Waliser, Spriggs, & Feldman, 2002; Pinquart & Sorensen, 2006; Yakubu, 2000). Caregivers may be at an increased risk for illness, poor immune function, infection, and depression (Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991; Vitaliano, Zhang, & Scanlan, 2003; Wu et al., 1999). At least one study suggested that caregivers with compromised mental and physical health may provide lower-quality care to the recipients of care (Beach, 2005). Caregivers who are visually impaired may have a variety of unique concerns because of their difficulties with vision loss and the exceptional burdens and strains of providing care for a family member who is chronically ill or disabled. …