Caring for Older Adults With Vision Impairment and Dementia

Abstract

Background and Objectives Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context. Research Design and Methods We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. VI was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey-report, interviews, and cognitive tests. Our outcomes included: hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month. Results Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully-adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7-times as many hours (95% CI=1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI=1.1-1.6) and VI only (95% CI=1.1-1.6) spent 1.3-times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2-times as many valued activities affected (95%CI=2.2-4.6), while caregivers of dementia only and VI only reported 1.9-times (95% CI=1.4-2.6) and 1.3-times (95% CI=0.9-1.8) more activities affected, respectively. Discussion and Implications Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI. Translational Significance As compared to caring for older adults with either dementia or vision impairment, caring for older adults with both dementia and vision impairment involves more hours of caregiving per month and further limits caregivers' ability to participate in social activities. Low vision rehabilitation and integration of low vision services into the care of older adults with dementia and vision impairment may reduce caregiver burden.

Interventions for quality of life and related outcomes among unpaid caregivers of older adults with visual impairments: A scoping review

“…Indeed, the toll of caring for older adults with VIs is enormous and many unpaid caregivers report significant consequences for their own quality of life. The identified barriers for unpaid family caregiver quality of life include depressive symptoms, life satisfaction, caregiver burden, emotional distress, social concerns, psychological concerns, stress, mental health, physical health, strain, and number of hours of care provided to the older adult with VI (Bambara et al, 2009; Horowitz et al, 2004; Varadaraj et al, 2020; Watson, 2001; Whitson et al, 2011). These barriers negatively impacted the quality of life of unpaid caregivers of older adults with VI that were included in the studies.…”

“…For example, Whitson et al (2011) proposed a series of multimodal communication techniques (e.g., written instructions or audio messages) and related interventions to maximize convenience (e.g., in-home visits, synchronization with other health services, or transportation) for unpaid caregivers of older adults with VIs. Furthermore, Varadaraj et al (2020) discussed outreach programs or interventions focusing on caregiving training and other support services. Other proposed interventions included better engagement and support for family caregivers of people with VIs in the health care system, support services, and interventions targeted toward improving quality of life and related outcomes (Bambara et al, 2009; Horowitz et al, 2004; Watson, 2001).…”

Prevalence of Visual Impairment in Older People with Dementia and Its Impact: A Scoping Review

“…Our scoping review also demonstrates the almost complete lack of studies focused on the impact on carers, with only one qualitative study and one quantitative study addressing this topic. 3,13 Many studies reporting comments from carers were about the impact of VI on those with dementia, rather than the impact of VI on themselves as part of their caring role. Therefore, an important area of further study would be to investigate the impact of VI on carers of those with dementia, including consideration of health outcomes of carers.…”

“…There were only two studies (one qualitative and one quantitative) that speci cally investigated the added impact of VI to dementia on carers, both in a community setting 3,13 (Table 3 and Table 4). A UK qualitative study reported negative impacts on carers of those with dementia and VI including negative emotions and loss of hobbies 14 .…”

“…Only one qualitative study and one quantitative study provided data on the impact of comorbid VI on carers. Most studies were from the United States (US) (9 studies) [5][6][7][8][9][10][11][12][13] and the United Kingdom (UK) (10 studies) 3,14-21 . Only three studies were from China [22][23][24] and one global study 25 reported data from low and middle income countries (Table 1).…”