Is Dementia-Specific Caregiving Compared to Non-Dementia Caregiving Associated with Physical Difficulty Among Caregivers for Community-Dwelling Adults?

Abstract

Objective:

To identify whether dementia caregiving is associated with physical difficulty among informal caregivers.

Methods:

This cross-sectional retrospective cohort study design used data from the 2015 National Health and Aging Trends Study and the National Study of Caregiving. Binary logistic regression was used to examine the association between substantial physical difficulty and dementia caregiving among 1,871 caregivers.

Results:

Nearly 14% of the caregivers reported substantial physical difficulty. Dementia caregivers were 1.5 times more likely to report caregiving-related substantial physical difficulty (adjusted odds ratio [AOR]=1.58; p=0.04) than non-dementia caregivers. Factors associated with substantial physical difficulty included: caregiver gender, self-rated health, depressive symptoms, pain, and caring for someone receiving assistance with three or more self-care or mobility activities.

Discussion:

Future studies should identify strategies to mitigate the physical demands on dementia caregivers. Early monitoring of caregivers self-rated health, depressive symptoms and pain may identify those more likely to experience physical difficulty.

Nearly 15 million Americans serve in the role as family caregivers and provide informal care to an adult 65 years of age or older (Wolff, Spillman, Freedman, & Kasper, 2016). While positive benefits for providing care for a person with a chronic condition exist (Roff et al., 2004; Roth, Dilworth-Anderson, Huang, Gross, & Gitlin, 2015; Semiatin & O’Connor, 2012), family caregiving has been cited as a chronic stressor in that it can create physical and psychological strain over prolonged periods of time (Pinciotti et al., 2017; Schulz & Sherwood, 2008). It is well documented that family caregiving is associated with poor mental, physical, and physiological outcomes in caregivers (Pinciotti et al., 2017; Pinquart & Sörensen, 2007; Schulz, Beach, Czaja, Martire, & Monin, 2020). Care-related tasks often entail extreme physical demands throughout the duration of the health trajectory of the person living with a chronic condition. Similar to other subjective measures (e.g., caregiver burden or strain), physical difficulty has been operationalized and measured several ways(National Academies of Sciences, Engineering, and Medicine, 2016; Wolff et al., 2016). Physical difficulty often encompasses the emphasis on the difficulty related to care-related task of providing assistance with activities of daily living (ADLs), including bathing or getting in and out of bed, and instrumental activities of daily living (IADLs) such as transportation, which can be taxing to the person providing care (Wolff et al., 2016). Nearly one in five caregivers report such care as physically difficult (National Alliance for Caregiving and the AARP, 2015).

Caregivers who provide greater intensity in care with healthcare-related needs are twice as likely to report physical difficulty providing care compared to those who provide some or no help (Wolff et al., 2016). Findings suggest that more than 96% of family caregivers provide complex chronic care help with ADLs or IADLs to people aging with chronic conditions (Reinhard, Levine, & Samis, 2012). These chronic physical demands may place caregivers at elevated risk for poor health outcomes that may impact their ability to manage their caregiving responsibilities and their own health. This is pertinent to consider as most caregivers are middle-to-older aged and manage their own chronic health conditions as well (Wolff et al., 2016). Difficulties managing one’s own health and increasing caregiving-related physical demands may subsequently result in negative effects on the care recipient or institutionalization of the care recipient (Kapoor, Manoharan, Senthil Vel Rajan Rajaram, Streim, & Mavandadi, 2020; Navaie-Waliser et al., 2002). Further, informal caregiving has been associated with increased risk for physical exhaustion, injuries, and accidents (Hayes, Chapman, Young, & Rittman, 2009; Pinquart & Sörensen, 2007; Pucciarelli et al., 2017). Caregivers who provide care for longer durations of time may be at increased risk for taxing physical exertion. These demands might be prolonged or worsened because the care recipients have diminished capacity to care for themselves, such as caring for persons living with Alzheimer’s Disease or related dementias.

Compared to other caregivers, providing care to people living with dementia may be more challenging since their experiences are often more intense and longer-term (Kapoor et al., 2020; Ory, Hoffman III, Yee, Tennstedt, & Schulz, 1999). People living with dementia require more supervision, have more dependency in ADLs/IADLs, more behavioral problems, and are more likely to be depressed (Alzheimer’s Association, 2019). Additionally, caregivers of people living with dementia provide more care on average than non-dementia caregivers (Alzheimer’s Association, 2019). Consistent with stress process frameworks that are used to explain the relationships between the social role (i.e., caregiving) and health outcomes, greater exposure to stressors and less access to coping resources is associated with poorer physical health outcomes(Pearlin, L. I., 1989; Pearlin, Leonard I., Mullan, Semple, & Skaff, 1990). Given the prolonged period of time and intensity of care provided—often with limited respite or support—dementia caregivers may be at greater risk for physical difficulty related to their care role.

There are nearly 5.7 million Americans living with Alzheimer’s disease and related disorders, and this number is projected to rise to 14 million by 2050 (Alzheimer’s Association, 2019). Most will rely on a family caregiver for support throughout the duration of their health condition. Given the projected increased prevalence of people living with dementia, it is crucial to examine whether dementia caregiving is associated with increased physical difficulty in the caregiver. Such efforts will be useful in developing home- and community-based programming and interventions to support dementia caregivers offset their physically demanding care-related activities. As such, in this study, we addressed whether dementia caregiving was associated with physical difficulty using a nationally representative sample of informal caregivers for older adults with disabilities. We hypothesize that dementia caregivers will be more likely to experience substantial physical difficulty compared to non-dementia caregivers.

Methods

The present retrospective cohort study leveraged data from the 2015 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC), two linked, nationally representative studies of Medicare beneficiaries aged 65 and older and their families and unpaid caregivers. The NHATS participants were sampled from the Medicare enrollment file; persons in older age groups and of Black, non-Hispanic race and ethnicity were oversampled (DeMatteis, Freedman, & Kasper, 2016; Montaquila, Freedman, & Kasper, 2014). The first survey was fielded in 2011 with annual follow-up interviews. In 2015, the sample was replenished (Freedman, Skehan, Wolff, & Kasper, 2019). If a participant was unable to respond, in-person interviews were conducted with a proxy respondent.

For caregivers to be eligible for the NSOC, NHATS respondents living in the community and in residential care non-nursing home facilities had to identify a helper who was assisting with mobility, self-care, or household activities (for a health-related reasons). NHATS participants provided names of helpers who were contacted for participation in the NSOC and interviewed by phone. Up to five caregivers per older adult were eligible. For those with more than five eligible helpers, five were randomly selected, resulting in the exclusion of 108 caregivers. Details of the NSOC sample design, including eligibility criteria, and response rates were provided in Freedman et al. (2019).

For the present study we restricted our sample to N = 1,871 caregivers of community-dwelling older adults (n = 1,230). We excluded caregivers of older adults in residential care or nursing homes because they often have different experiences than those providing assistance in traditional community settings.

Measures

Outcome variable:

Substantial physical difficulty. Caregivers were asked the following: “Is helping (the care recipient) physically difficult for you?” If yes, respondents were asked how difficult helping was by providing a rating between 1 (a little difficult) and 5 (very difficult); a score of 3–5 indicated substantial physical difficulty (Wolff, et al., 2016). The final dependent variable was a dichotomous measure the indicated substantial physical difficulty (1), or less than substantial physical difficulty (0).

Independent variables.

Our primary independent variable of interest was the dementia status of the care recipient. Dementia refers to probable dementia, either by self-report of dementia diagnoses, a score indicating dementia on the AD8 Dementia Screening Interview (Galvin, Roe, Xiong, & Morris, 2006), or by performance on cognitive tests of memory, orientation, and executive function (with a score of 1.5 standard deviations below the mean in at least two domains). Classification of probable dementia using these criteria corresponded well with a clinical diagnostic assessment(Kasper, Freedman, & Spillman, 2013). We also included the caregiver’s race (non-Hispanic White, non-Hispanic Black, Hispanic/other), age (younger than 65, 65–74, 75 and older) and gender (male or female). Consistent with prior research, several measures that may be associated with physical difficulty were included in our analysis. First, we included self-rated health (excellent/very good/good or fair/poor). Second, caregivers were asked how often over the past month they had felt down, depressed, or hopeless. Caregivers were categorized as having depressive symptoms if they responded, “several days,” “more than half the days,” or “nearly every day” (versus “not at all”). Third, we included the presence of physical pain in the last month. Fourth, we included the number of self-reported health conditions from a list of possible diagnoses and created a categorical variable that we had used in prior work (no conditions, one or two conditions, or three or more conditions). We accounted for the length of time that someone had been assisting an older adult by examining the duration of care (less than one year, 1–4 years, 5 or more years) (Parker & Fabius, 2020).

We included two additional care recipient characteristics:care recipient age (65–74, 75–84, 85, and older); we used a hierarchical measure to examine the type of assistance older adults were receiving (self-care, mobility, or household help for a health reason). Consistent with previous work, activities were categorized as: assistance with household activities only, help with one or two self-care or mobility tasks, or help with three or more self-care or mobility tasks, as done in Freedman & Spillman, 2014.

Statistical analyses

We described our sample using univariate statistics and used bivariate analyses to examine the relationships between independent variables and the substantial physical difficulty using Pearson’s chi-square tests. Next, we used binary logistic regression to examine the odds of reporting substantial physical difficulty after adjusting for the caregiver’s and care recipient’s characteristics. Significance was determined at the p<.05 level. We conducted statistical analyses in Stata, Version 15 (StataCorp, 2017). We used weighted data that accounted for the complex survey design of the NSOC study (Freedman, DeMatteis, & Kasper, 2019).

Results

Descriptive characteristics for the total sample are presented in Table 1. About 14% of the caregivers reported substantial physical difficulty. Most caregivers were younger than 65 years (63.5%), non-Hispanic white (64.6%), and female (61.5%). Nearly one quarter of the caregivers reported fair or poor self-rated health (22.3%) or depressive symptoms (27.4%). Half of caregivers reported having physical pain in the past month (50.1%). A substantial number of the caregivers had one or two chronic conditions (46.7%), and most reported providing care for five years or more (52.2%). A majority of the care recipients that caregivers provided help for were 75 years or older (65%) and received assistance with one or two self-care and/or mobility activities (41.0%). One quarter of the caregivers were caring for someone with dementia (25.3%). Statistical differences by report of substantial physical difficulty were noted across several characteristics. Caregivers with substantial physical difficulty were more often Hispanic or other race and ethnicity, female, self-reported fair or poor health, depressive symptoms, and pain in the past month, had three or more health conditions, and were more often caring for an older adult receiving assistance with three or more self-care or mobility activities and dementia.

Table 1.

Characteristics of family and unpaid caregivers of community-dwelling older adults, by report of substantial physical difficulty

	Total	Substantial Physical Difficultyb	No Substantial Physical Difficulty
Caregivers, No. (row %), millionsa	17,561 (100%)	2,376 (13.5%)	15,184 (86.5%)	p-value
Caregiver characteristics
Age
Younger than 65	63.5	60.5	64.0	0.54
65–74	21.0	24.6	20.4
75 and older	15.5	14.9	15.6
Race
Non-Hispanic White	64.6	60.1	65.3	0.01
Non-Hispanic Black	13.4	9.9	13.9
Hispanic and other	22.0	30.0	20.8
Genderc
Male	38.5	23.9	40.8	<0.001
Female	61.5	76.1	59.2
Self-rated health Excellent, very good, good self-rated
health	77.7	53.5	81.5	<0.001
Fair or poor self-rated healthc	22.3	46.5	18.5
Depressive symptoms
Yes	27.4	51.1	23.7	<0.001
No	72.6	48.9	76.3
Pain in the past month
Yes	50.1	74.4	46.3	<0.001
No	49.9	25.6	53.7
Number of health conditions
None	29.7	22.7	30.8	<0.01
1–2 health conditions	46.6	42.6	47.2
3 or more health conditions	23.7	34.6	22.0
Duration of helpc
Less than 1 year	8.6	6.9	8.8	0.14
1–4 years	39.2	32.0	40.3
5 or more years	52.2	61.1	50.8
Care recipient characteristics
Age
65–74	35.0	32.0	35.5	0.69
75–84	38.5	40.6	38.1
85+	26.5	27.4	26.4
Level of assistance
Household help only	29.3	23.1	30.3	<0.001
1–2 self-care/mobility activities 3 or more self-care/mobility	41.0	27.8	43.0
activities	29.8	49.3	26.7
Dementia	25.3	37.7	23.3	<0.001

Note. Data are survey weight adjusted; NSOC 2015.

^a.Unweighted sample includes 1,871 caregivers of 1,230 community-dwelling older adults (excluding those in nursing homes and residential care facilities); n=1605 report no substantial physical difficulty; n=266 report substantial difficulty.

^b.Levels of difficulty rated 3 to 5 categorized as substantial physical difficulty.

^c.Cases with missing data excluded: n=11 for gender, n=16 for fair or poor self-rated health, n=1 for duration of help.

Table 2 presents our logistic regression, examining the association between dementia and substantial physical difficulty after adjusting for the caregivers’ and care recipients’ characteristics. Dementia caregivers were more than 1.5 times more likely than caregivers who were not caring for someone with dementia to report caregiving-related substantial physical difficulty (adjusted odds ratio [AOR]=1.58; p=0.04). Other characteristics associated with reporting substantial physical activity included: caregiver gender, self-rated health, depressive symptoms, reporting pain in the past month, and caring for someone receiving assistance with three or more self-care or mobility activities. Female caregivers were more likely to report physical difficulty than male caregivers (AOR=2.34; p=<0.001). Caregivers reporting fair or poor health were almost three times more likely to report physical difficulty than those reporting excellent, very good, or good health (AOR = 2.85; p = <0.001). Caregivers with depressive symptoms were twice as likely to experience physical difficulty than those without depressive symptoms (AOR=2.00; p<0.001), as were those who reported pain in the past month, relative to those who did not (AOR=1.99; p<0.01). Caregivers of those receiving help with three or more self-care or mobility activities were more than 2.5 times more likely than caregivers helping older adults receiving assistance with household activities only to report substantial physical difficulty (AOR = 2.58; p<0.01).

Table 2.

Results from the Logistic Regression Depicting the Determinants of substantial physical difficulty among caregivers of community-dwelling older adults.

	OR	95% CI	p-value
Caregiver characteristics
Age
Younger than 65		Ref
65–74	1.40	0.77, 2.57	0.26
75 and older	1.25	0.72, 2.15	0.42
Race
Non-Hispanic White		Ref
Non-Hispanic Black	0.78	0.51, 1.19	0.24
Hispanic and other	1.45	0.93, 2.27	0.10
Gender
Male		Ref
Female	2.34	1.52, 3.62	<0.001
Fair or poor self-rated health	2.85	1.96, 4.14	<0.001
Depressive symptoms	2.00	1.25, 3.23	<0.01
Pain in the past month	1.99	1.42, 2.79	<0.001
Number of health conditions
None		Ref
1–2 health conditions	1.25	0.77, 2.06	0.35
3 or more health conditions	0.97	0.55, 1.70	0.92
Duration of help
Less than 1 year		Ref
1–4 years	1.21	0.61, 2.40	0.57
5 or more years	1.77	0.80, 3.94	0.16
Care recipient characteristics
Age
65–74		Ref
75–84	1.39	0.86, 2.24	0.17
85+	1.07	0.66, 1.73	0.77
Level of assistance
Household help only		Ref
1–2 self-care/mobility activities	0.86	0.51, 1.44	0.55
3 or more self-care/mobility activities	2.58	1.39, 4.78	<0.01
Dementia	1.58	1.02, 2.45	0.04

Note. Data are survey weight adjusted; NSOC 2015. 1,871 caregivers of 1, 230 community-dwelling older adults. Levels of difficulty rated 3 to 5 categorized as substantial physical difficulty. OR= Odds ratios; CI: Confidence interval

Discussion

This cross-sectional study examined the association between substantial physical difficulty and caregiving among a national sample of caregivers for community-dwelling older adults. Among this sample, 13.5% of caregivers reported experiences of substantial physical difficulty due to care-related tasks. Characteristics associated with substantial physical difficulty among caregivers in the bivariate analysis were Hispanic and other race, being female, fair-to-poor self-rated health, had depressive symptoms, pain in the past month, three or more chronic conditions, and were providing assistance with three or more self-care or mobility activities or someone with dementia. Findings from the fully adjusted logistic model determined that dementia caregivers were more than 1.5 times more likely than non-dementia specific caregivers to report caregiving-related substantial physical difficulty. The study findings provide new evidence on the association between dementia caregiving and increased physical demands as compared to non-dementia specific caregiving.

Our findings demonstrate that caregivers for people living with dementia are more likely to experience substantial physical difficulty compared to non-dementia caregivers. This finding is consistent with current literature demonstrating this association (Chi et al., 2019). While the specific reasons for this finding are unclear, compared to other caregivers providing care to people living with dementia may be more cumbersome due to the intensity of care-related tasks involved and the diminished capacity for self-care among recipients. It is important to further examine whether the intensity of providing care and managing challenging behaviors in persons with dementia is associated with physical difficulty among the caregivers, which can guide the development of programming to target the care needs of dementia caregivers. Further, given the taxing physical toil of dementia-related caregiving, it is important to identify whether respite services or home and community-based supports can mitigate the physical demands of providing care for people with dementia.

Caregivers with substantial physical difficulty were more often female and reported fair or poor self-rated health, depressive symptoms, and pain in the past month. Consistent with previous findings (Polenick et al., 2020), female caregivers were more likely to report physical difficulty associated with care-related tasks. This may be associated with findings that demonstrate that female caregivers tend to report poorer physical health outcomes compared to their male counterparts (Vitaliano, Zhang, & Scanlan, 2003). Further, given the physical strength and exertion associated with completing care-related tasks, such as getting in and out of bed or bathing, the physical demands of these activities may be challenging for female caregivers. It appears that the current study findings on the correlates between caregivers’ characteristics—self-rated health, depressive symptoms, number of health conditions, and pain and substantial physical difficulty in the multivariate analysis—are novel. Early identification of self-rated health, depressive symptoms, chronic health conditions, and pain may indicate caregivers who may be vulnerable to experiencing physical difficulty.

Some limitations to the study should be recognized. This is a retrospective analysis using data available from the 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data sets. With this cross-sectional data we cannot infer causal relationships. Future prospective research may provide greater insight into causality. Certain variables that may be important predictors of physical difficulty, such as structured physical activity (Atkinson, Batterham, & Williamson, 2018) or individual capacities and the home environment (Szanton, Leff, Wolff, Roberts, & Gitlin, 2016) are not available in these data sources. In addition, although age, gender, and race were included, the social and structural determinants of health were not included in this analysis. We also acknowledge that the caregivers’ health and physical difficulty may be bidirectional in how they are related. Prospective research should explore causality and whether these determinants serve as mediators or moderators of the relationship between dementia-caregiving and increased physical demands. Despite the limitations, this study did demonstrate strengths and makes a significant contribution to the literature. In this study a nationally representative sample was used. We also examined the physical difficulties experienced by the caregivers, which is understudied in dementia caregivers.

In conclusion, dementia caregiving was associated with substantial physical demands compared to non-dementia-specific caregiving. Additionally, caregivers with substantial physical difficulty more often reported poorer mental and physical health outcomes and provided assistance for older adults needing help with increased ADLs/IADLs. Future studies should identify services and supports that can be useful to help mitigate the physical demands on dementia caregivers. Identification of support components for caregivers will be beneficial to their ability to provide quality care for their family members with dementia. Further, early monitoring of caregivers self-rated health, depressive symptoms, and pain may identify those more likely to experience physical difficulty. Such monitoring may also prove to be beneficial to supporting optimal physical and mental health among caregivers.