Caring for Older Adults with Self-Reported Vision Impairment: Findings from the National Study of Caregiving

Abstract

Purpose:

To examine caregiving relationships for older adults with vision impairment (VI)

Design:

Cross-sectional study with a nationally representative sample

Setting:

The National Health and Aging Trends Study linked to the National Study of Caregiving, Year 2011

Study Population:

1,776 family/unpaid caregivers to community-dwelling Medicare beneficiaries age ≥65 years

Main Outcome Measure(s):

In the preceding month, the number of: (1) hours of care provided, (2) valued activities affected by caregiving, and (3) odds of experiencing substantial emotional, (4) financial, and (5) physical difficulty related to providing care

Exposure:

VI defined as report of blindness or difficulty with distance or near vision

Results:

Among 1,776 caregivers, 428 spent an average of 111 (SE=9.1) hours per month assisting older adults with VI, while 1,348 spent an average of 72 (SE=3.3) hours assisting older adults without VI. In fully adjusted negative binomial regression analyses, caregivers of older adults with VI spent 36% more hours (Incident Rate Ratio [IRR]=1.36; 95%CI=1.15–1.60) providing care and reported having 61% more valued activities affected (IRR=1.61; 95%CI=1.23–2.10) than caregivers of older adults without VI. In fully adjusted logistic regression analyses, caregivers of older adults with VI had greater odds of emotional (Odds Ratio [OR]=1.46; 95%CI=1.04–2.03) but not financial (OR=1.33; 95%CI=0.87–2.03) or physical (OR=1.13; 95%CI=0.74–1.74) difficulty related to providing care than caregivers of older adults without VI.

Conclusions and Relevance:

Our results suggest that caring for older adults with VI has different demands on time and emotional well-being than caring for older adults without VI, but no differences in financial or physical difficulties.

INTRODUCTION

As the aging population continues to grow in the United States (US), the prevalence of vision impairment (VI) is also projected to increase.¹ In 2015, among US adults aged 40 and older, about 3 million people were visually impaired. By 2050, this number is projected to more than double to about 7 million people.¹ Greater numbers of older adults living with impairment portend rising care needs for the aging population.

There is ample evidence to suggest that VI is associated with a decrease in functional status, specifically mobility and physical performance.^2,3 Family members play a key role in assisting visually impaired older adults with daily functioning and managing health.^4,5 However, despite evidence on the influence of caregiver support on older adults’ health outcomes, there is limited research examining in a comprehensive manner the impact of caregiving for persons with VI. A recent systematic review found that caregivers are at an increased risk of depression, especially when caring for individuals with VI who have greater difficulty with activities of daily living (ADLs) and require more extensive supervision.⁶ In addition, studies that have focused on specific eye diseases such as age-related macular degeneration have documented the increased cost and magnitude of care needs associated with worsening visual acuity.⁷ Although there have been some efforts to understand how VI affects the older adult and their caregiver, existing research is largely based on small samples and does not go beyond examining the effect on caregivers’ psychosocial health.

A unique partnership exists between a caregiver and the person they assist that requires sustained efforts to preserve individual autonomy while recognizing the evolving needs of and challenges faced by both the older adult and their caregiver. Given evidence gaps, there is a need to investigate and understand caregiving for older adults with VI in order to effectively support caregivers and educate health care professionals in providing comprehensive care and cultivating complex partnerships. Therefore, we aim to extend the existing literature by analyzing the caregiving needs of older adults with VI and the impact of providing care on family caregivers, using nationally representative data from the US. Findings may provide evidence to optimize the bilateral support system between the caregivers and older adults with VI.

METHODS

Study Population

We performed cross-sectional analyses of data from the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries aged 65 years and older, linked to the National Study of Caregiving I (NSOC), a study of family and other unpaid caregivers to NHATS participants. The linked surveys together provide care recipient and caregiver perspectives on late-life care at a national level. These data are exempt from institutional review board approval as they are de-identified and publicly available. Informed written consent was obtained from NHATS participants and oral consent was obtained from NSOC participants prior to data collection.

In the NHATS, participants completed an in-person survey by themselves or with the assistance of a proxy respondent that provides information about their health, environment, and ability to complete everyday tasks. Although the NHATS data can provide longitudinal estimates as there have been multiple rounds of data collection, we focused our attention on the Round 1 (2011) data to perform a cross-sectional analysis. The NHATS data was then linked the NSOC data through a sample person identifier.

The NSOC surveys the experience of up to five caregivers per NHATS participant, providing measures such as care activities, duration of care, aspects of caregiving, support environment, participation, health of caregiver, employment and caregiving, and health insurance and income. Caregivers of NHATS participants who received assistance with self-care, mobility, or household activities (the latter only if specifically for health of functioning reasons) were eligible for telephone interviews if they assisted the NHATS participants with mobility, self-care activities, household activities, transportation, or medical care.

Analytic sample

Of the 2,423 NHATS participants eligible for NSOC, 4,935 of their caregivers met study eligibility criteria (Figure 1). The NHATS participants did not provide contact information for 1,573 eligible family caregivers, and 1,355 of the remaining 3,362 eligible family caregivers could not be located or refused to respond, yielding 68.1% and 59.7% response rates at the first and second stages, respectively.^8,9 The study weights allow adjustment for differential probabilities of selection at the NHATS sample person and caregiver levels, thereby providing nationally representative estimates.¹⁰ NSOC interviews were conducted with 2,007 caregivers of 1,369 older adults. Among them, 1,786 caregivers (1,684=spouse or offspring, 102=other relatives) who provided care to 1,199 community-dwelling older adults were included (those in residential care facilities who rely on the availability of supportive services were excluded). We further limited our study sample to 1,776 caregivers who had provided assistance with any activity in the last month to 1,196 older adults from the NHATS.

Figure 1. Study Participation Selection.

Abbreviations: NHATS=National Health and Aging Trends Study, NSOC=National Study of Caregiving

Caregiving Outcomes

Caregiving outcomes, all collected by self-report and pertaining to the last month, were analyzed, as previously done.^9,11 They included: (1) the number of hours of care provided, (2) the number of valued activities affected by caregiving, and (3) substantial emotional, (4) financial, and (5) physical difficulty, experienced due to providing care in the last month. Valued activities refer to those reported as being very or somewhat important to the caregiver that were limited in the prior month because of caregiving, and included: (1) visiting friends and family, (2) going out for enjoyment, (3) attending religious services, and (4) participating in club meetings or group activities. Participation restriction in each valued activity was coded as a binary variable (yes/no) and then summed to obtain the 0–4 composite score for this outcome. Caregivers rated emotional, financial, and physical difficulty on a scale from 0 to 5 for each domain, and levels of difficulty rated as 3 to 5 were categorized as substantial difficulty in each domain (reference group being caregivers who indicated 0–2, i.e. none, little, or some difficulty).

Vision

The NHATS participants (or their proxies) reported if they were blind or had difficulty with distance or near vision while using contact lenses or glasses, if normally worn. Participants were classified as having VI if they responded “no” to any of the following questions: “When you use glasses or contacts, do you see well enough to: (1) “recognize someone across the street?”; (2) “watch television across the room?”; and (3) “read newspaper print”. VI was defined as participant or proxy-reported blindness or difficulty with distance or near vision, as defined in previous analyses.^11–14

Covariates

Socio-demographic and health data of the NHATS participants (age, race/ethnicity, sex, marital status, income, medical comorbidities) and the NSOC caregivers (age, sex, education, self-reported health status, relationship to the older adult, and cohabiting status) were examined. Comorbidity was defined as the number of self-reported chronic diseases, categorized as 0–1, 2–3, or 4+ conditions, and included high blood pressure, arthritis, osteoporosis, lung disease, stroke, heart disease, cancer, depression, probable dementia and hip fracture. Diabetes was also ascertained by survey-reported physician diagnosis and was entered into models as a separate covariate.

Statistical Analysis

Sociodemographic and health characteristics were summarized across the NHATS participant groups with and without VI. Unweighted frequencies and weighted percentages for categorical variables and weighted means (standard error [SE]) for continuous variables are reported. Logistic regression models were used to assess the association between sociodemographic and health characteristics between older adults with and without VI. Similarly, NSOC caregiver characteristics, were summarized across the NHATS older adult groups (those caring for participants with and without VI). The nature and intensity of care provided by each group in terms of hours of care per month, types of activities for which help is provided, health system interactions, and health management tasks are described. Caregiving-related emotional, physical, and financial difficulty, participation effects in valued activities and the use of supportive services, stratified by the NHATS participant groups with and without VI, is also described.

We used negative binomial regression models to examine how VI is associated with intensity of caregiving (hours of caregiving in the last month) and the impact on participation in valued activities (number of valued activities affected by caregiving). This method was chosen since both outcomes, caregiving hours and number of valued activities affected by caregiving, are count data and had excessive zero counts. In other models, we used logistic regression to determine the odds of experiencing substantial emotional, financial, or physical difficulty related to providing care.

Sensitivity Analysis

We conducted sensitivity analyses excluding caregivers of NHATS participants who had proxy-reported VI to examine if there was differential reporting of caregiving outcomes by proxy-vs. participant-report of VI (as the proxy could also be the caregiver). We also conducted sensitivity analysis by type of VI, i.e., sub-group analysis for distance and near VI to examine any differential impact on caregiving outcomes.

All multivariable models were adjusted for NHATS participant age, race/ethnicity, sex, marital status, income, comorbidities, diabetes, and NSOC caregiver age, caregiver sex, caregiver education, caregiver’s self-reported health, caregiver relationship to the older adult, and cohabiting status. These covariates were included due to clinical relevance and previously established associations with VI and caregiving needs.⁹ All regression models accounted for NSOC’s complex survey design (NSOC-specific survey weights were applied) and clustering by NHATS participants (to account for correlation between multiple caregivers for an NHATS older adult). All tests were two-sided, and statistical significance was established as p-value less than 0.05. Analyses were conducted in SAS 9.4 (SAS Institute, Cary, North Carolina, USA) and STATA 15 (StatCorp LLC, College Station, TX, USA).

RESULTS

Caregiver Characteristics

Among 1,196 community-dwelling NHATS participants, 915 (using NHATS weights, estimated N=3,305,196; 78.8%) did not have VI and 281 (estimated n=891,254; 21.2%) had VI. Among 1,776 caregivers, 1,348 (using NSOC weights, estimated N=11,643,724; 77%) assisted older adults without VI and 428 (estimated N=3,485,249; 23%) assisted those with VI (Tables 1a and 1b). NHATS participants with and without VI had a similar number of caregivers (median [range]: 1 [1–5] caregiver per older adult, for both groups). As compared to NHATS participants (those receiving care) without VI, participants with VI were older, less likely to be married and more likely to have a lower education and income (Table 1a). As compared to caregivers of older adults without VI, caregivers of older adults with VI were younger, less likely to be their spouse and more likely to be their offspring, and more likely to have been providing care for a duration longer than 4 years (Table 1b).

Table 1a–

Characteristics of NHATS participants linked to NSOC

Participant Characteristics	Total (N=1196)	Not Vision Impaired (n=915, 78.8%)	Vision impaired (n=281, 21.2%)	p-value
Age, in years, mean (SE)	78.4 (0.23)	78.0 (0.27)	80.1 (0.53)	0.002
Age categories, in years, %				<.001
65–69	19.0	19.3	18.0
70–74	16.7	17.8	12.3
75–79	18.4	19.2	15.7
80–84	20.4	21.2	17.4
85–89	16.3	14.7	22.3
90+	9.1	7.7	14.3
Female, %	65.0	65.9	61.9	0.293
Race/Ethnicity, %				0.353
Non-Hispanic white	74.9	75.5	72.5
Non-Hispanic black	13.2	12.7	15.1
Hispanic/Other	12.0	11.8	12.4
Education, %				<.001
<High school	34.3	31.3	45.2
High school graduate	27.8	27.8	27.4
>High school	38.0	40.8	27.4
Marital Status, %				<.001
Married/living with a partner	51.5	54.2	41.7
Separated/divorced	9.1	9.5	7.8
Widowed/never married	39.3	36.3	50.5
Income, %				0.001
<$15000	35.0	32.8	43.0
$15000-$29999	29.5	28.1	34.9
$30000-$60000	21.2	23.0	14.7
>=$60000	14.3	16.1	7.5
No. of Comorbidities, %a				0.240
0–1	10.3	11.0	7.9
2–3	45.7	46.4	43.2
4+	43.9	42.6	48.9
Diabetes, %	36.3	35.9	38.0	0.625

Weighted percentages reported

^aComorbid conditions include hypertension, arthritis, osteoporosis, lung disease, stroke, heart disease, cancer, depression, probable dementia, and fracture

Table 1b.

Characteristics and caregiving activities of NSOC caregivers linked to NHATS

Caregiver Characteristics	Total (N=1776)	NHATS respondent-Not Vision Impaired (n=1348, 77.0%)	NHATS respondent-Vision impaired (n=428, 23.0%)	p-value
Age, in years, mean (SE)	57.0 (0.7)	57.7 (0.7)	54.7 (1.1)	0.015
Age categories, in years, %				0.075
<40	12.7	11.3	17.2
40–49	16.4	16.7	15.4
50–59	25.5	25.0	27.3
60–69	24.2	24.3	24.1
70–79	14.6	16.1	9.5
80+	6.6	6.6	6.4
Female, %	62.3	62.1	63.1	0.746
Education, %				0.297
≥High school	42.9	41.6	47.1
Some college	33.1	33.5	31.7
≥College	24.0	24.9	21.1
Self-rated health status, %				0.442
Excellent or very good	50.5	51.5	47.2
Good	28.5	28.0	30.4
Fair or poor	21.0	20.6	22.4
Relationship to the older adult, %				<.001
Spouse	23.0	25.5	14.5
Daughter or son	53.0	51.8	56.9
Other relative Nonrelative	16.4	14.8	21.6
Nonrelative	7.7	7.9	7.0
Travel time to older adults’				0.319
residence, %	51.7	50.9	54.4
Co-reside	25.5	26.6	21.7
≤10 min	16.2	15.7	17.9
11–30 min	6.7	6.9	6.0
≥31 min
Duration of caregiving (in years), %				0.029
<1	16.6	17.9	12.3
1–4	39.6	40.1	37.7
>4	43.9	42.0	50.1
Providing assistance for, %
Shopping	90.8	90.7	91.2	0.781
Transportation	87.3	87.6	86.4	0.576
Housework	84.9	85.3	83.6	0.538
Mobility	72.0	69.1	81.5	<.001
Banking	58.4	57.6	60.8	0.381
Self-care	51.4	48.4	61.4	0.004
Health system logistics, %
Make appointments	59.6	58.7	62.5	0.348
Order medicines	52.0	50.4	57.5	0.028
Handle insurance issue	39.9	38.6	44.3	0.108
Health management, %
Diet	30.6	30.6	30.6	0.998
Foot care	29.7	27.0	38.6	<.001
Skin care	25.6	23.5	32.6	0.003
Exercise	23.1	22.5	25.1	0.365
Dental care	15.7	13.5	23.1	<.001

Weighted percentages reported

Caregiving Circumstances and Activities

Caregivers of older adults with VI were more likely to assist with mobility and self-care-related activities than caregivers of older adults without VI (Table 1b). Additionally, caregivers of older adults with VI were also more likely to assist with ordering medicines, and managing foot, skin, and dental health issues. Caregivers assisted older adults with VI a mean of 111.1 (SE=9.1) hours in the past month as compared to 72.5 (SE=3.3) hours for those without VI, p<0.001 (Figure 2).

Figure 2. Mean Number of Caregiving Hours in the Last Month by Vision Impairment Status.

Note- Difference across the groups (those caring for participants with and without vision impairment) =p<0.001

Caregiving-Related Difficulties

Caregivers of older adults with VI were more likely to report experiencing substantial emotional and financial difficulties related to caregiving than caregivers of older adults without VI (Table 2), although no group differences were noted in regard to physical difficulty. Those caring for older adults with VI were more likely to reduce participation due to their caregiving in each of the following activities: visiting friends and family, going out for enjoyment, and attending religious services. No group differences were observed for the impact of caregiving on work or use of supportive services for caregiving.

Table 2.

Caregiving-related difficulties among caregivers

Caregiving-related Difficulty, %	Total (N=1776)	NHATS respondent-Not Vision Impaired (n=1348, 77.0%)	NHATS respondent-Vision impaired (n=428, 23.0%)	p-value
Depressed mooda	32.1	30.9	36.3	0.079
Emotional difficultyb				0.034
Little, none, or some	73.4	75.1	67.6
Substantia	26.6	24.9	32.4
Physical difficultyb				0.297
Little, none, or some	85.7	86.3	83.7
Substantial	14.3	13.7	16.3
Financial difficultyb				0.035
Little, none, or some	83.1	84.5	78.5
Substantial	16.9	15.5	21.5
Impact on valued activitiesc
Visiting friends and family	17.6	15.1	26.0	<.001
Going out for enjoyment	12.1	9.6	20.1	<.001
Attending religious services	8.1	7.1	11.2	0.024
Participating in club meetings or group activities	7.5	7.1	9.2	0.201
Works for pay	39.5	38.6	42.6	0.188
Impact on work (among those who work)
Missed work in past monthd	10.2	10.3	10.0	0.924
Missed hourse	10.5	11.1	8.8	0.461
Reduced productivity	14.0	14.0	14.0	0.988
Supportive services or assistance directed to caregiver
Respite care	10.6	9.7	13.5	0.093
Received training on how to assist	6.8	6.2	8.8	0.124
Support group participation	4.6	5.0	3.0	0.254
Use of ≥1 supportive service	18.4	17.3	22.1	0.128

^a“Over the last month, how often have you felt down, depressed or hopeless?” Responses of “several days”, “more than half the days”, or “nearly every day” were categorized as depressed mood.

^bCaregivers rated their level of difficulty experienced in each domain on a scale from 0 to 5. Responses of no difficulty were categorized as little or none, scores of 1 to 2 were categorized as some, and 3 to 5 were categorized as substantial.

^cReduced participation in the past month because of caregiving for activities identified as being somewhat or very important.

^dMissed work refers to any missed time from work in the past month because of caregiving.

^eMissed hours reflects hours of work missed because of caregiving in relation to all hours typically worked.

Caregivers assisting older adults with VI reported that participation in a mean of 0.7 (SE=0.06) valued activities were affected in the last month due to providing care, while those assisting older adults without VI reported 0.4 (SE=0.03) affected valued activities, p<0.001 (Figure 3).

Figure 3. Mean Number of Valued Activities Affected due to Providing Care in the Last Month by Vision Impairment Status among Caregivers.

Note- Difference across the groups (those caring for participants with and without vision impairment) =p<0.001

Caregiving Intensity and Impact on Valued Activities

In fully adjusted negative binomial regression analysis, in the last month, caregivers of older adults with VI spent 36% more hours (Incident Rate Ratio [IRR]=1.36; 95%CI=1.15–1.60) providing care than caregivers of older adults without VI (Table 3), and had 61% more valued activities affected (IRR=1.61; 95%CI=1.23–2.03). In fully adjusted logistic regression analysis, caregivers of older adults with VI had greater odds of experiencing substantial emotional difficulty (Odds Ratio [OR]=1.46; 95%CI=1.04–2.03) related to providing care in the past month than caregivers of older adults without VI. However, no significant difference was noted between caregivers of older adults with and without VI with regard to experiencing substantial financial (OR=1.33; 95%CI=0.87–2.03) or physical (OR=1.13; 95%CI=0.74–1.74) difficulty related to providing care in the past month. In sensitivity analysis excluding caregivers of participants who had proxy-reported VI, results were largely similar, although regression estimates tended to be of lower magnitude (Supplemental Table 1 at AJO.com). In additional sensitivity analysis by type of VI, distance and near VI were associated with similar caregiving outcomes (results not shown).

Table 3.

Regression analysis: Caregiving outcomes by vision impairment status

	Model 1. Caregiving hours per month	Model 2. Number of valued activities affected due to providing care	Model 3. Substantial Emotional Difficultya	Model 4. Substantial Financial Difficultya	Model 5. Substantial Physical Difficultya
Group	IRR (95% CI)	IRR (95% CI)	OR (95% CI)	OR (95% CI)	OR (95% CI)
No VI	Reference	Reference	Reference	Reference	Reference
VI	1.36 (1.15,1.60)	1.61 (1.23,2.10)	1.46 (1.04,2.03)	1.33 (0.87,2.03)	1.13 (0.74,1.74)

^aCaregivers rated their level of difficulty experienced in each domain on a scale from 0 to 5; scores of 3 to 5 were categorized as substantial.

Abbreviations: VI=vision impairment, IRR=incident rate ratio, CI=confidence intervals, OR=odds ratio

All models adjusted for NHATS participant age, race/ethnicity, sex, marital status, income, comorbidities, and diabetes, and NSOC caregiver age, caregiver sex, caregiver education, caregiver self-reported health, caregiver relationship to the older adult, and cohabiting status

DISCUSSION

In a nationally representative sample of family and unpaid caregivers who assist older adults with activities pertaining to mobility, self-care, household, transportation, and medical care, caregivers of older adults with self-reported VI spent 1.4-times as many hours providing care than caregivers of older adults without self-reported VI and they had 1.6-times as many valued activities adversely impacted. Caregivers of individuals with self-reported VI also had 1.5-greater odds of reporting caregiving-related substantial emotional difficulty as compared to caregivers of older adults without VI, but not financial or physical difficulty. These results indicate that caring for older adults with VI places greater demands on family and relatives than those caring for older adults without VI.

Current literature broadly addresses the emotional, physical, and financial demands that a caregiver may experience when caring for older adults. As presented in Wolff et al., when caregivers provide more substantial care to assist older adults with health care activities, they also may experience greater restrictions in valued activities and loss in work productivity.⁹ Minimal research has focused specifically on the experience of caregivers providing assistance to older adults with VI. A few smaller cross-sectional studies have determined that the severity of VI is associated with an increased risk of depression in their caregiver.^5,15 Additionally, the concept of care burden has been evaluated using composite measures such as the Burden Index of Caregivers^4,5 and the Caregiver Burden Scale^15,16 among others, which assess the time, emotional, physical, existential, and service-related burden associated with caregiving through a series of questions. This estimation of care burden is correlated with the number of hours and the intensity of care provided by the caregiver to an individual with VI.^4,5,16

Although the use of the word ‘burden’ to describe what can be more aptly described as a partnership between caregiver and care recipient may be seen as problematic in these studies, their investigation into the mental health challenges associated with caregiving is important to acknowledge. In a study by Beach et al. investigating factors associated with unmet needs in the care of older adults, caregivers that reported their experience as financially, emotionally, and physically difficult or causing a restriction in their participation in valued activities were more at risk of providing substandard care.¹⁷ Although we did not find a significant difference in depressed mood among caregivers of older adults with and without VI, caregivers of adults with VI were at 46% greater odds of experiencing substantial emotional difficulty than their counterparts caring for adults without VI. Since caregivers for older adults with VI also reported a greater restriction in valued activities compared to caregivers caring for individuals without VI, they may be appropriate candidates for additional assistance or resources in order to effectively and compassionately care for older adults.

This study adds to a growing body of literature addressing the complexities of caring for older adults with age-related conditions. Much like VI, other conditions like dementia and stroke can increase the caregiving demands on family and relatives. For example, various studies have determined that caregivers for older adults with dementia provided more hours of care than caregivers for older adults without dementia.^11,18,19 Additionally, the prevalence of caregivers reporting difficulty or restrictions in social participation was greatest in those caring for individuals with dementia and disability compared to those without dementia and disability.^19,20 Further, in prior analyses examining caregiving in the context of co-occurring dementia and VI, caring for older adults with VI involved similar time demands as caring for older adults with dementia, but participation impacts were greater when caring for older adults with both impairments.¹¹ Other studies acknowledge the psychological toll caring for individuals with stroke can have on caregivers, noting a high prevalence of anxiety and depression among caregivers.^21,22 These findings collectively emphasize the similar challenges faced by caregivers for older adults with a range of age-related conditions.

As the population continues to age, effective partnerships between caregivers and care recipients are becoming more of a necessity throughout the health care sphere. For that reason, enhancing and investing in the partnership between caregiver and care recipient takes on an even greater importance. Drawing from the work of Gregory et al., the partnership between a caregiver and an older adult with VI can be enhanced by promoting their visibility in health care interactions and by empowering them to be a partner in their own care.²³ Additionally, a focus on respecting the autonomy of the care recipient ought to be emphasized.²³ In regard to VI, research has shown that the care recipient’s completion of a vision rehabilitation program is associated with a lower risk of depression among caregivers.⁴ Problem-solving training (PST) has been used to improve emotional health among caregivers of persons with traumatic brain injuries and stroke, and such training in tandem with education about eye diseases, home modifications, and increased access to support services can perhaps be scaled to promote health and well-being among older adults with VI and their caregivers.^15,24,25 In our study, there was no significant difference in the use of supportive services or assistance between caregivers caring for individuals with and without VI. Developing public health initiatives and outreach programs that make caregiver training, support groups, supportive services, and other resources more accessible could help ameliorate some of the strain felt by caregivers. In addition, increasing the comfort and familiarity of caregivers with these programs will enhance the caregiver-care recipient partnership so to better meet the needs of both partners.

It is important to consider that the NHATS is a self-reported survey. As such, it assesses self-reported VI, which may measure a different construct then objective assessments of vision. Reported visual functioning is nevertheless valuable in obtaining individual perspectives on function and disability, and has been previously used in NHATS^12–14 as well as other population-based studies.²⁶ This study has limitations that should be considered when interpreting our results. The caregiving outcomes examined from the NSOC are based on retrospective report of hours spent on caregiving, which is susceptible to recall biases, although this data has been widely used in prior NSOC investigations.^9,18 Additionally, 19% (n=276) of our NHATS sample had proxy-reported responses for VI, and the majority (n=246) of these proxies were also the reporting caregiver. To address concerns over (overreporting) bias in the correlation between proxy-reported VI and caregiving outcomes, we conducted sensitivity analysis excluding proxy-reported VI, and results were largely the same. The NHATS does not provide data on the severity of VI among older adults which would be useful in more fully understanding caregiving relationships and providing the ability to examine a “dose response” relationship. Finally, we do not have data on the age at onset of VI, or information on how adapted persons are with their VI, that would be helpful in better elucidating these caregiving relationships.

Despite these limitations, this study is among the first to provide insight into the caregiving needs and relationships of a sample of older adults with VI that is nationally representative of the Medicare-eligible population in the US 65 years and older. Our results show that caring for older adults with vision loss places more demands on caregivers as compared to caring for older adults without vision loss, as evidenced by greater intensity of providing care and restriction of participation in caregiver valued personal/social activities, as well as a greater impact on the emotional well-being of caregivers. Despite these findings, our data indicate that caregivers of older adults with VI do not receive more supportive services to help assist them with their caregiving than caregivers of older adults without VI.

As the US population ages and the number of older adults with VI rises, the number of family and unpaid caregivers will likely increase in parallel. Therefore, there is a need to better engage and support caregivers in order to maximize these relationships and optimize outcomes for both the person with VI and the caregiver. For example, greater government support for paid caregivers for the provision of home and personal care services for older adults with VI may help support unpaid family caregivers and help supplement and enrich existing caregiving relationships. Further, longitudinal research in this area can elucidate changes in caregiving intensity and relationships that may occur with incident and progressing VI.

HIGHLIGHTS.

• In this nationally representative study, caregivers of older adults who reported vision impairment spent 36% more hours providing care and reported that 61% more of their valued activities were affected per month

• They also had 46% greater odds of experiencing substantial emotional difficulty, per month, than caregivers of adults without vision impairment

• No differences between caregivers of older adults with and without vision impairment were noted in terms of experiencing substantial physical or financial difficulty

• Caring for older adults with vision impairment requires greater time commitments and has a greater impact on participation in valued activities and emotional well-being than does caring for adults without vision impairment