Abstract
Background
Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers.
Objective
To evaluate whether the care–recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period.
Methods
This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult–child, “other” caregiver and “multiple” caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers’ QoL outcomes across types of relationship over time.
Results
About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers’ socio-demographics, “other” caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD’s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively).
Conclusions
The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.
Keywords: older adults, people living with dementia (PLWD), quality of life (QoL), informal caregivers, care–recipient relationship type, older people
Key Points
First longitudinal study examining the impact of different relationships on the quality of life (QoL) for informal caregivers of people living with dementia (PLWD).
Tailor interventions for caregiver QoL improvement to address specific subgroups based on relationship type or risk level.
Spousal caregivers of PLWD require special attention in social and healthcare services due to their high demands.
Introduction
Globally, the number of people living with dementia (PLWD) is rising steadily with nearly 9.9 million new cases each year. This figure translates into one every 3 s [1], increasing the demand on caregivers and the healthcare system. In the UK, approximately 700,000 informal caregivers of PLWD contributed an estimated 1.3 billion hours of informal assistance [2], valued at GPB 13.9 billion [3]. Extended caregiving may represent increased risk of caregiver burden [4] and cognitive impairment in PLWD adversely affects caregivers’ well-being [5–8].
Despite the negative outcomes of caregiving, studies also show PLWD caregivers often experience positive outcomes from providing care, such as strengthened family relationships, lower depression and increased life satisfaction [9–13]. The Stress Process Model [14–16] suggests caregiving is a stressful experience, influenced by objective indicators, such as dementia severity, care duration and intensity, as well as subjective appraisals and caregiver characteristics. Caregiver outcomes are further impacted by secondary stressors like challenges of balancing employment and caregiving and are mediated by the availability of coping mechanisms and support resources. Therefore, dementia caregiving is a dynamic and multidimensional process [17]. To gain a comprehensive understanding of informal caregiving for PLWD, it is pivotal to assess the quality of life (QoL) of informal caregivers, enabling a subjective assessment of both its positive and negative aspects [18, 19].
The QoL of caregivers not only impacts their own well-being but also affects that of the PLWD [20]. Therefore, improving caregivers’ QoL is a primary goal of the WHO's dementia strategy [21]. This area has been explored through both qualitative and quantitative studies, leading to the identification of key factors affecting QoL, such as relationship, characteristics of both caregiver and care–recipient, health, caregiving demands and social involvement, which have been synthesized in systematic reviews [22–27]. However, despite recognizing the importance of the caregiver–care recipient relationship type (hereafter referred to as the “relationship type”) in quantitative studies, literature on this topic remains limited [22, 28]. Furthermore, much of the research has focused on spousal and adult–child caregivers [29] where the latter reportedly had significantly higher QoL than spousal caregivers [30]. It is important to note that caregiving dynamics are evolving due to changing societal trends, such as baby boomers’ marital patterns and family structures compared to previous generations [31]. As a result, caregivers with other relations to care recipients and shared caregiving roles are expected to have a more significant caregiving role in the future. Furthermore, the challenges and needs of informal caregivers change as dementia progresses [32]. However, there is a dearth of longitudinal studies that investigate whether and how the type of relationship predicts caregivers’ QoL over time.
When evaluating relationship type effects on caregivers’ QoL, it is essential to also consider caregivers’ characteristics. The impact of caregivers’ socio-demographic factors, such as age, gender, education, race, marital status and co-residence with a dependent child (<18 years), on QoL of PLWD caregivers is significant [33–35]. These factors affect both the positive and negative aspects of caregiving [36]and influence the relationship type’s impact on QoL over time. Research [37] on informal caregivers for persons with Alzheimer's disease showed the combined influence of gender and relationship type on caregiving experience over time. A Canadian study further revealed that caregivers’ well-being is shaped by the intersection of gender, relationship type and caregiving demands [38]. It noted differences in depressive symptoms and life satisfaction among spousal caregivers, sons and daughters, based on the intensity of their caregiving. Additionally, dementia characteristics, such as the illness progression and severity, have been identified as impact factors of caregivers’ QoL [26, 39]. A systematic review found that caregiver burden, health-related characteristics of informal caregivers, dementia-related characteristics, socio-demographic and contextual factors were all significantly and negatively associated with the QoL of informal caregivers [40].
Therefore, this study aims to evaluate whether the care–recipient relationship type predicts changes in the QoL of informal caregivers of older adults with dementia over a two-year period. Specifically, the research questions are:
1) After adjusting for caregivers’ socio-demographic factors, does the type of relationship or shared caregiving predict changes in caregivers of PLWD’s QoL over a two-year period?
2) Does PLWD’s dementia status impact the prediction of relationship type on caregivers’ QoL change?
Methods
This was a secondary analysis of longitudinal data. The access and re-use of the data were approved by National Health and Aging Trends Study (NHATS) under NHATS Sensitive Data Use Agreements. The study's reporting adheres to the Strengthening the Reporting of Observational Studies in Epidemiology guidelines (STROBE) [41].
Data sources
The data were drawn from two waves of linked NHATS and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). NHATS is sponsored by the National Institute on Aging (grant number NIA U01AG32947) and was conducted by Johns Hopkins University. Together the NHATS and NSOC are the only national platform for studying caregiving from the perspective of older adults and their caregivers [42].
Sample selection
The care recipient sample in this study were R5 NHATS participants who live in the community and receive help with certain activities of daily living (ADL)—getting around inside, getting out of bed, eating, bathing/showering/washing up, getting to or using the toilet, dressing- from their informal caregivers at the time of enrolment [42]. NHATS participants could identify up to five caregivers as helpers, but we only included the informal caregivers (i.e. family and unpaid caregivers) who were either (i) related to the older adults or (ii) unrelated to the older adult and not paid to help [43]. Sample selection criteria were the same for both waves. However, if the NHATS participants that caregivers cared for in R5 (2015) was marked as non-response in R6 (2016) or R7 (2017), no attempt was made to contact the caregiver for NSOC III.
Measures
Type of relationship
Informal caregivers are people who provide care to those who need it within the context of an existing relationship, such as a family member, a friend, or a neighbour [44]. If NHATs participants only indicated having a single caregiver, these caregivers were categorized into three groups: (i) care from a spouse/partner, (ii) care from an adult child, (iii) care from an informal caregiver other than a spouse/partner and adult child, such as child-in-law, sibling and friend. (referred to from here on as “other” caregiver). (iv) If NHATs participants indicated having multiple caregivers, each caregiver was included separately with a designation of “multiple” caregivers, as opposed to a single caregiver.
QoL outcomes
Caregivers can have either negative or positive caregiving experiences [27, 45]. Negative outcomes result when caregivers experience emotional difficulty, depression, anxiety, strained relationships with care recipients and demands interfering with social participation. On the other hand, positive outcomes stem from feelings of self-fulfilment, appreciation, satisfaction with care recipients and the development of self-competencies [46, 47]. Consequently, caregivers’ QoL should encompass both positive and negative aspects. Therefore, caregivers’ QoL was assessed through three outcomes: negative aspects, including negative emotional burden (NEB) and social strain (SS), and positive aspects, that is, positive emotional benefit (PEB). These outcomes were measured using items from the NSOC questionnaire (see Appendix I), as described in our previous study [33]. The measures have been confirmed through exploratory factor analysis with high eigenvalues and variability (NEB, PEB, SS are 5.45 & 28.71%, 2.68 & 14.13%; 1.38 & 7.27%, respectively) and their application in the literature [33, 48–51].
Dementia status was classified into probable dementia, possible dementia and no dementia, as generated from the NHATS R5. The measurement process was detailed in our prior study [51].
The following caregiver socio-demographic variables were used in analyses: age range (<45 year, 45–54 year, 55–64 year, ≥65 year), gender, race/ethnicity, annual income, education, marital status and whether having a dependent child (<18 years). Socio-demographic variables contribute significantly to shaping caregivers’ outcomes [16, 46]. Research has shown that the relationships between caregiving intensity and QoL vary substantially based on factors like race/ethnicity, gender, age and income [49, 52]. Living arrangements, such as whether a caregiver lives with a child or not, have also been reported to impact QoL [47, 50]. These variables have been identified as influential factors in caregivers’ QoL and applied in previous studies [22, 33].
Statistical analysis
Categorical variables, including the type of relationship, dementia status, socio-demographic characteristics, and QoL subscales (PEB, NEB, SS), were described using counts and percentages. Changes in “high” vs. “low” of QoL subscales over a 2-year period (2015–2017) were described using descriptive statistics. The association between baseline QoL subscale burden level and type of relationship was examined using Chi-square tests. Generalized estimating equations (GEE) was employed to investigate potential differences in QoL changes across four groups over two years. The application of GEE enhances the robustness of our analysis by accommodating the longitudinal structure of the data, providing insights into group-specific variations in QoL trajectories over time. Three models were built with sequential adjustment for covariates: Model 1 was unadjusted; Model 2 adjusted for caregivers’ socio-demographics and Model 3 additionally controlled for care recipients’ dementia status.
To assess the robustness of our results, we compared baseline QoL and socio-demographics between missing and initially included data. All analyses were conducted using Stata 16.0, with a two-tailed significance test set at an alpha level of 0.05.
Results
In 2015 NSOCII, 1,871 caregivers were included to the study, linked to 1,230 older adults in NHATS R5. By 2017, 882 caregivers remained eligible for the analysis, linked to 601 older adults in NHATS R7 (see Appendix II). Most caregivers were female (n = 593, 67.54%), white (n = 477, 55.85%), had no dependent child co-residency (n = 734, 84.95%), married or living with a partner (n = 515, 58.66%), had an education above high school (n = 291, 36.42%), and were aged above 65 years (n = 365, 42.05%). Among them, 497 were single caregivers and were divided into three groups: spousal caregivers (n = 201, 40.4%), adult–child caregivers (n = 230, 46.3%) and “other” caregivers (n = 66, 13.3%). Four hundred ninety-nine were multiple caregivers assisting for 218 older adults (see Table 1). Table 2 presents the demographic information of the older adults, including their age, gender, race and dementia status. Compared to those with complete data, caregivers with missing data tend to be younger, while care recipients are older. Additionally, they are more likely to be unmarried (including single, widowed, divorced), and a greater number of care recipients are probable or possible dementia cases. Appendix II provides details regarding the reasons and differences for care recipients and caregivers missing in NSOC III (2017) compared to NSOC II (2015).
Table 1.
Caregivers’ socio-demographics 2015 baseline
| Variables, count (percentage) | Care–recipient relationship types | ||||
|---|---|---|---|---|---|
| Total | Spousal caregiver | Adult–child caregiver | “Other” caregiver | Multiple caregivers | |
| (n = 882) | 173 (19.61) | 166 (18.82) | 44 (4.99) | 499 (56.58) | |
| Sex | |||||
| Male | 285 (32.46) | 76 (43.93) | 45 (27.11) | 7 (16.28) | 157 (31.65) |
| Female | 593 (67.54) | 97 (56.07) | 121 (72.89) | 36 (83.72) | 339 (68.35) |
| Age | |||||
| < 45 yrs | 89 (10.25) | 1 (0.58) | 12 (7.36) | 7 (15.91) | 69 (14.11) |
| 45 to 54 yrs | 169 (19.47) | 2 (1.16) | 54 (33.13) | 9 (20.45) | 104 (21.27) |
| 55 to 64 yrs | 245 (28.23) | 12 (6.98) | 62 (38.04) | 10 (22.73) | 161 (32.92) |
| 65 + yrs | 365 (42.05) | 157 (91.28) | 35 (21.47) | 18 (40.91) | 155 (31.70) |
| Mean (SD) | 61.62 (14.36) | 75.72 (8.12) | 57.32 (8.61) | 58.77 (17.28) | 58.36 (14.30) |
| Race/ethnicity | |||||
| Non-Hispanic White | 477 (55.85) | 122 (73.05) | 79 (48.77) | 18 (40.91) | 258 (53.64) |
| Non-Hispanic Black | 296 (34.66) | 32 (19.16) | 63 (38.89) | 19 (43.18) | 182 (37.84) |
| Hispanic | 28 (3.28) | 5 (2.99) | 8 (4.94) | 3 (6.82) | 12 (2.49) |
| Other | 53 (6.21) | 8 (4.79) | 12 (7.41) | 4 (9.09) | 29 (6.03) |
| Annual income | |||||
| <1st quartile | 234 (26.53) | 18 (10.40) | 60 (36.14) | 16 (36.36) | 140 (28.06) |
| 1st-2nd quartiles | 228 (25.85) | 64 (36.99) | 36 (21.69) | 11 (25.00) | 117 (23.45) |
| 2nd-3rd quartiles | 231 (26.19) | 46 (26.59) | 33 (19.88) | 8 (18.18) | 144 (28.86) |
| >3rd quartile | 189 (21.43) | 45 (26.01) | 37 (22.29) | 9 (20.45) | 98 (19.64) |
| Education | |||||
| Below high school | 113 (14.14) | 36 (21.05) | 18 (11.04) | 5 (11.36) | 54 (12.83) |
| High school | 203 (25.41) | 47 (27.49) | 37 (22.70) | 17 (38.64) | 102 (24.23) |
| Above high school | 291 (36.42) | 50 (29.24) | 61 (37.42) | 17 (38.64) | 163 (38.72) |
| Bachelor and above | 192 (24.03) | 38 (22.22) | 47 (28.83) | 5 (11.36) | 102 (24.23) |
| Marital status | |||||
| Married/living with a partner | 515 (58.66) | 173 (100) | 69 (42.07) | 10 (22.73) | 263 (52.92) |
| Unmarried | 363 (41.34) | N/A | 95 (57.93) | 34 (77.27) | 234 (47.08) |
| Living with a child <18 yrs | |||||
| No | 734 (84.95) | 170 (98.27) | 134 (81.71) | 39 (88.64) | 391 (80.95) |
| Yes | 130 (15.05) | 3 (1.73) | 30 (18.29) | 5 (11.36) | 92 (19.05) |
yrs: years
Table 2.
Care recipients’ socio-demographics 2015 baseline
| Variables, count (percentage) | Total | By spouse/partner | By adult child | By “other” | By multiple caregivers |
|---|---|---|---|---|---|
| (n = 601) | 173 (28.79) | 166 (27.62) | 44 (7.32) | 218 (36.27) | |
| Sex | |||||
| Male | 207 (34.44) | 100 (57.80) | 20 (12.05) | 15 (34.09) | 72 (33.03) |
| Female | 394 (65.56) | 73 (42.20) | 146 (87.95) | 29 (65.91) | 146 (66.97) |
| Age | |||||
| 65–69 yrs | 51 (8.49) | 32 (18.50) | 8 (4.82) | 2 (4.55) | 9 (4.13) |
| 70–74 yrs | 101 (16.81) | 34 (19.65) | 18 (10.84) | 14 (31.82) | 35 (16.06) |
| 75–79 yrs | 121 (20.13) | 49 (28.32) | 28 (16.87) | 5 (11.36) | 39 (17.89) |
| 80–84 yrs | 129 (21.46) | 37 (21.39) | 34 (20.48) | 10 (22.73) | 48 (22.02) |
| 85–89 yrs | 112 (18.64) | 17 (9.83) | 38 (22.89) | 10 (22.73) | 47 (21.56) |
| 90+ yrs | 87 (14.48) | 4 (2.31) | 40 (24.10) | 3 (6.82) | 40 (18.35) |
| Race/ethnicity | |||||
| Non-Hispanic White | 360 (60.40) | 138 (80.23) | 82 (49.70) | 19 (45.24) | 121 (55.76) |
| Non-Hispanic Black | 192 (32.21) | 28 (16.28) | 66 (40.00) | 20 (47.62) | 78 (35.94) |
| Hispanic | 29 (4.87) | 4 (2.33) | 10 (6.06) | 2 (4.76) | 13 (5.99) |
| Other | 15 (2.52) | 2 (1.16) | 7 (4.24) | 1 (2.38) | 5 (2.30) |
| Dementia status | |||||
| Probable dementia | 150 (25.00) | 30 (17.34) | 50 (30.12) | 12 (27.27) | 58 (26.73) |
| Possible dementia | 78 (13.00) | 16 (9.25) | 25 (15.06) | 6 (13.64) | 31 (14.29) |
| No dementia | 372 (62.00) | 127 (73.41) | 91 (54.82) | 26 (56.09) | 128 (58.99) |
As shown in Table 3, overall the odds of being high burden for each QoL subscale (PEB, NEB and SS) was higher in 2017 compared to 2015 (OR = 63.62, P < 0.001, 95% CI [46.76, 86.55]; OR = 48.69, P < 0.001, 95% CI [36.50, 64.94]; OR = 51.44, P < 0.001, 95% CI [38.58, 68.58], respectively). Baseline SS significantly differed among four groups (Chi2 [3]= 15.703, P = 0.001), with adult–child caregivers experiencing higher SS (Table 3). GEE revealed the same pattern in assessing QoL over time for the four groups. Adult–child caregivers exhibited a significantly higher risk of SS than spousal caregivers in the unadjusted model, but this was not statistically significant after adjusting for caregivers’ socio-demographics and PLWD’s dementia status (Table 4).
Table 3.
Caregivers’ QoL outcomes
| Care–recipient relationship types | |||||
|---|---|---|---|---|---|
| Spousal caregiver | Adult–child caregiver | Other caregiver | Multiple caregivers | ||
| PEB | NSOC II | ||||
| Low | 115 (72.33) | 99 (62.66) | 35 (81.40) | 345 (71.88) | |
| High | 44 (27.67) | 59 (37.34) | 8 (18.60) | 135 (28.13) | |
| Pearson chi2 [3] = 7.832 P = 0.050 | |||||
| NSOC III | |||||
| Low | 120 (73.62) | 107 (69.93) | 32 (82.05) | 337 (75.56) | |
| High | 43 (26.38) | 46 (30.07) | 7 (17.95) | 109 (24.44) | |
| NEB | NSOC II | ||||
| Low | 105 (64.81) | 107 (67.72) | 33 (76.74) | 357 (74.38) | |
| High | 57 (35.19) | 51 (32.28) | 10 (23.26) | 123 (25.63) | |
| Pearson chi2 [3] = 7.1707 P = 0.067 | |||||
| NSOC III | |||||
| Low | 121 (74.69) | 105 (68.18) | 33 (86.84) | 346 (75.88) | |
| High | 41 (25.31) | 49 (31.82) | 5 (13.16) | 110 (24.12) | |
| SS | NSOC II | ||||
| Low | 127 (73.84) | 105 (64.42) | 39 (88.64) | 384 (77.42) | |
| High | 45 (26.16) | 58 (35.58) | 5 (11.36) | 122 (22.58) | |
| Pearson chi2(3) = 15.703, P = 0.001 | |||||
| NSOC III | |||||
| Low | 133 (77.78) | 99 (61.49) | 35 (89.74) | 359 (75.74) | |
| High | 38 (22.22) | 62 (38.51) | 4 (10.26) | 115 (24.26) | |
Notes: Positive emotional benefit was assessed through 14 questions related to positive feelings about caregiving, life satisfaction, personal growth and well-being. Scores ranged from 0 to 38, with higher scores indicating fewer positive emotion benefits. NEB was measured through 12 questions concerning negative caregiving experience, mental health and loneliness, with scores ranging from 0 to 34. A higher score indicates a greater NEB.
SS was measured using six questions related to participation, assessing whether they participated in activities, and whether caregiving responsibilities hindered their participation. Scores ranged from 0 to 6, with a higher score indicating higher social strain.
Each outcome were coded as “high burden” for the top quartile and “low burden” for the remainder. These outcomes have been previously substantiated through exploratory factor analysis and applied in previous caregiver-related studies. [3, 27, 42, 43].
Table 4.
Prediction of care–recipient relationship type on QoL changes over 2 years (2015–2017) (n = 882)
| Model 1 | Model 2 | Model 3 | |||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| OR | SE | P | 95% CI | OR | SE | P | 95% CI | OR | SE | P | 95% CI | ||||
| PEB | |||||||||||||||
| 2015 vs. 2017: OR = 63.62, P < 0.001, 95% CI [46.76, 86.55] | |||||||||||||||
| Adult–child caregivers | 1.07 | 0.28 | 0.783 | 0.65 | 1.79 | 1.15 | 0.37 | 0.662 | 0.61 | 2.17 | 1.07 | 0.35 | 0.844 | 0.56 | 2.02 |
| “Other” caregivers | 0.78 | 0.32 | 0.541 | 0.35 | 1.72 | 0.78 | 0.35 | 0.582 | 0.33 | 1.87 | 0.73 | 0.32 | 0.474 | 0.30 | 1.74 |
| Multiple caregivers | 1.00 | 0.24 | 0.984 | 0.63 | 1.61 | 0.95 | 0.29 | 0.867 | 0.52 | 1.74 | 0.89 | 0.28 | 0.706 | 0.48 | 1.64 |
| NEB | |||||||||||||||
| 2015 vs. 2017: OR = 48.69, P < 0.001, 95% CI [36.50, 64.94] | |||||||||||||||
| Adult–child caregivers | 1.52 | 0.38 | 0.095 | 0.93 | 2.50 | 1.33 | 0.39 | 0.342 | 0.74 | 2.37 | 1.28 | 0.38 | 0.419 | 0.71 | 2.30 |
| “Other” caregivers | 0.59 | 0.20 | 0.119 | 0.30 | 1.15 | 0.34 | 0.12 | 0.003 | 0.17 | 0.70 | 0.33 | 0.12 | 0.003 | 0.16 | 0.68 |
| Multiple caregivers | 1.14 | 0.25 | 0.545 | 0.74 | 1.75 | 0.87 | 0.24 | 0.596 | 0.51 | 1.48 | 0.84 | 0.24 | 0.530 | 0.48 | 1.45 |
| SS | |||||||||||||||
| 2015 vs. 2017: OR = 51.44, P < 0.001, 95% CI [38.58, 68.58] | |||||||||||||||
| Adult–child caregivers | 1.92 | 0.47 | 0.008 | 1.19 | 3.11 | 1.12 | 0.36 | 0.718 | 0.60 | 2.12 | 0.97 | 0.32 | 0.916 | 0.51 | 1.84 |
| “Other” caregivers | 0.58 | 0.23 | 0.164 | 0.27 | 1.25 | 0.37 | 0.16 | 0.019 | 0.16 | 0.85 | 0.31 | 0.13 | 0.005 | 0.14 | 0.71 |
| Multiple caregivers | 1.24 | 0.25 | 0.289 | 0.83 | 1.85 | 0.78 | 0.23 | 0.404 | 0.43 | 1.40 | 0.67 | 0.20 | 0.188 | 0.37 | 1.21 |
Note: Three generalized estimating equation (GEE) models with a logit link function for each QoL outcomes and with spouse/partner caregivers as a reference group. Model 1 without adjustment for socio-demographics. Model 2 were adjusted for caregivers’ socio-demographic characteristics including age, gender, race, income, education, marital status and living with a dependent child (<18 years). Model 3 additionally controlled for care–recipients’ dementia status.
OR: odds ratio; SE: standard error; 95% CI: 95% confidence intervals. Bold values denote statistical significance at the p < 0.05 level.
“Other” caregivers demonstrated a lower risk of experiencing NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI [0.16, 0.85]; in the adjusted model, respectively) (Table 4). This significant difference between “other” and spousal caregivers remained after additional adjustment for care recipients’ dementia status (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.33, P = 0.005, 95%CI [0.14, 0.71], respectively).
Discussion
This study is the first longitudinal investigation assessing how different types of relationship and sharing caregiving approaches impact QoL outcomes across multiple aspects for informal caregivers of PLWD. Our results indicate that, in comparison with “other” caregivers, spousal caregivers showed a greater tendency for increased NEB and SS over time.
Type of relationship, which was referred to as “Kinship” in a recent systematic review, is reported as one of the important risk factors for the trajectory of caregiver burden for PLWD; being a spouse increases the risk of experiencing caregiver burden over time [53]. Our study demonstrates that spousal caregivers are more prone to experiencing NEB, which aligns with this review and our prior cross-sectional analysis [33] where spousal caregivers had higher odds of experiencing NEB than other caregivers. One of the primary contributing factors is cohabitation [53–55]. In our study, it is notable that all spousal caregivers lived with the care recipients, while other caregivers usually lived elsewhere. Additionally, spouses tend to be of an older age themselves, a factor consistently associated with an increased burden compared to younger caregivers, as evidenced by previous research [53, 54, 56, 57].
Our findings provide evidence that type of relationship predicts SS over time, with spousal caregivers being more likely to experience SS. This aligns with our previous study that “other" caregivers had lower odds of experiencing SS than spousal caregivers [33]. This may be associated with the sense of “role captivity,” a situation where a caregiver feels trapped or constrained in their caregiving role, which was often due to the demands of caring for a person with a challenging diagnosis such as dementia [58]. “Role captivity” was reported as one of the strongest predictors of negative caregiving experience according to the caregiver stress model [59, 60]. Spousal caregivers often experience a greater obligation to their caregiving role, leading to sacrifices like giving up leisure activities, reducing social time and limiting employment opportunities [61, 62]. As a result, they may find themselves feeling “trapped” in their caregiving role. Additionally, previous research has shown that caregiving motivations, particularly when it is a choice, can impact caregiver wellbeing. Lower QoL has been associated with caregivers who perceived inadequate alternative care options [63]. Our findings imply the high need for social support to spousal caregivers for better SS self-management.
Although adult–child caregivers showed a significantly higher risk of SS over time than spousal caregivers in unadjusted model, this difference diminished after adjusting for their socio-demographics and their care–recipients’ dementia status (Table 4). This finding is consistent with our previous cross-sectional study [33]. Existing literature has consistently reported that many factors, such as caregivers’ race, age and care recipients’ cognitive functions impact the dementia caregiving experience [64, 65]. Considering the notable differences in race, age and education level between spousal and adult–child caregivers, along with the variations in dementia status of care recipients in these two groups, our findings show that the impact of relationship type on caregivers’ QoL trajectories can be influenced by caregivers’ socio-demographics and care recipients’ dementia status.
Research has indicated that the positive aspects of caregiving can be influenced by the caregiver's relationship to the care–recipient [66, 67]. Our previous cross-sectional study also reported that “other” caregivers had a significantly higher PEB compared to spousal caregivers [33]. However, the current findings does not provide sufficient evidence to support the idea that the PEB for caregivers of PLWD differs based on the type of relationship. This paper uses a stress model [16] and focuses on questions that address caregivers’ current experiences. However, the concept of positive aspects of caregiving is multidimensional and can also encompass self-efficacy, satisfaction and competence [68]. The diversity in conceptual and operational terms makes it challenging to compare outcomes across studies. Future studies could consider to use more standardized measurements to explore this theme comprehensively.
Our hypothesis that shared caregiving would predict the QoL of caregivers of PLWD over time was not supported. The impact of PLWD’s dementia status caregivers’ QoL, observed in our previous cross-sectional analysis [33], was not confirmed in this study. This could be attributed to a relatively short follow-up period (only two years) and a limited number of observed time points (only two, in 2015 and 2017). Additionally, the heterogeneous nature of the structure of multiple caregivers, comprising spouse, adult child and other types, may have contributed to the lack of significant findings on shared caregiving. Future studies could benefit from larger sample size, longer study durations and more frequent observations at various time points to provide a more comprehensive understanding of the impact of shared caregiving on caregivers’ QoL.
Limitations and strength
Due to the secondary data analysis, the original data were not collected to address our specific research questions. While the QoL measures in our study were confirmed and applied in previous caregiver-related studies, they may not fully cover all QoL issues that arise from informal caregiving duties. Future studies should explore other aspects of QoL (e.g. material well-being [69], health status [70] and use validated measures (e.g. Carer well-being and support questionnaire [71]) to substantiate the study findings. Furthermore, care recipients’ multi-morbidity was not captured in this study, potentially affecting the study’s generalizability to the source population. Future research should explore additional factors for validation and generalization. Another limitation is that we only included baseline dementia status in the analysis, which was reported as the best predictor of cognitive change in older adults [72]. However, changes in dementia status over time could have potentially impacted the findings. Furthermore, some attrition in our longitudinal analysis may have been selective, and we included only care recipients with consistent caregivers, resulting in the exclusion of 21% of the recipients in 2017. Care recipients excluded were older and had a greater number of probable or possible dementia. However, sensitivity analysis revealed no significant differences in caregivers’ QoL between complete and missing data.
Despite the acknowledged limitations, our study analysed two companion national datasets (NHATS and NSOC) to investigate the longitudinal impact of type of relationship and shared caregiving approaches on caregivers of PLWD. The study took into account caregivers’ socio-demographic and care recipients’ dementia status. The utilization of a GEE approach enhances the robustness of our findings. However, further research, particularly through long-term prospective studies, is needed to build on this study's results, address caregivers’ evolving challenges and guide targeted support strategies.
Conclusion
In conclusion, the study demonstrates that spousal caregivers face a higher risk of NEB and SS over time. This highlights the pressing need for accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses, in public policy, research and practical interventions.
Supplementary Material
Acknowledgements
The authors gratefully acknowledge the National Health & Aging Trends Study for granting access to these data.
Contributor Information
Aiping Lai Kin, School of Rehabilitation Science, McMaster University, Hamilton, Ontario L8S 1C7, Canada.
Lauren E Griffith, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario L8S 1C7, Canada.
Ayse Kuspinar, School of Rehabilitation Science, McMaster University, Hamilton, Ontario L8S 1C7, Canada.
Jenna Smith-Turchyn, School of Rehabilitation Science, McMaster University, Hamilton, Ontario L8S 1C7, Canada.
Julie Richardson, School of Rehabilitation Science, McMaster University, Hamilton, Ontario L8S 1C7, Canada; Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario L8S 1C7, Canada.
Declaration of Conflicts of Interest:
None.
Declaration of Sources of Funding:
None.
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