At-a-glance – Primary caregivers of individuals with developmental disabilities or disorders in Canada: highlights from the 2018 General Social Survey – Caregiving and Care Receiving

Introduction

Unpaid caregiving is increasingly common in Canada, driven by an aging population, the rising prevalence of disabilities and a growing emphasis on community- and home-based care.^{Footnote 1Footnote 2} In 2018, about one in four people aged 15 years and older provided unpaid care to a friend or family member with a long-term health condition, disability or age-related issue in Canada.^{Footnote 3}

While all caregivers face unique challenges, those supporting individuals with developmental disabilities or disorders (DD) have distinct experiences. These caregivers (referred to as “DD caregivers”) often provide ongoing support that evolves throughout the care receiver’s lifespan.^{Footnote 4Footnote 5} Their roles are important and wide-ranging, impacting the lives of children, youth and adults with DD.^{Footnote 4Footnote 6Footnote 7}

DD encompass a group of conditions characterized by differences in physical development, learning, language or behaviour, which can affect daily functioning.^{Footnote 8} DD become apparent early in life and last throughout a person’s life. Common examples include intellectual disabilities, autism, attention-deficit/hyperactivity disorder, fetal alcohol spectrum disorder, Down syndrome and cerebral palsy.

Population-based studies in Canada have found that caregivers of children with DD report more health problems and poorer mental health than those caring for children without DD.^{Footnote 9Footnote 10} Population-based studies from other countries also report poorer health outcomes, mental health challenges, increased financial struggles and lower well-being among DD caregivers.^{Footnote 5Footnote 11}

To better understand these aspects, we used data from the 2018 General Social Survey (GSS) – Caregiving and Care Receiving^{Footnote 12} to examine the characteristics of caregivers of children, youth and adults with DD living in Canada and to describe the impacts of caregiving on caregivers.

Methods

Data source and study population

The GSS – Caregiving and Care Receiving is a national survey of people aged 15 years and older living in Canada’s 10 provinces.^{Footnote 12} The 2018 survey collected information on primary caregivers, that is, people who provided help or care to family members, friends or neighbours with a long-term health condition, physical or mental disability or aging-related problem in the past 12 months. Paid help or help provided on behalf of an organization were not within the scope of this survey.

Our study focus was on primary caregivers of people whose “main health condition or problem for which they have received help” was a “developmental disability or disorder.”^{Footnote 12}

The full unweighted sample of the 2018 GSS was 20258, of whom 248 self-identified as DD caregivers, 7416 as caregivers of individuals with conditions other than DD (referred to as “other caregivers”) and 12594 as non-caregivers. About 1% of caregiver interviews and 2% of non-caregiver interviews were conducted by proxy when the respondent did not speak English or French or could not participate in the survey for health reasons.^{Footnote 12}

Statistical analysis

Descriptive analyses were conducted to examine DD caregivers’ and care receivers’ sociodemographic characteristics, the type of care provided, caregivers’ health status, the impacts of caregiving on caregivers, caregiver supports and unmet support needs.

All estimates were weighted to be representative of all non-institutionalized persons aged 15 years and older, living in the 10 provinces of Canada, using sample weights provided by Statistics Canada for this survey.^{Footnote 12} Bootstrap methods were used to calculate variance estimates, including 95% confidence intervals (CI) and coefficients of variation. The estimates for DD caregivers were compared with estimates for other caregivers or for GSS respondents who were not caregivers, where appropriate. The associated 95% CIs were also compared and non-overlapping 95% CIs were considered statistically significantly different.

Analyses were carried out using statistical package SAS Enterprise Guide version 8.1 (SAS Institute Inc., Cary, NC, US).

Results

Based on data from the 2018 GSS, 4.5% (95% CI: 3.6%–5.3%) of caregivers provided care to a family member or friend with DD. DD were ranked as the seventh most common condition cared for, while aging or frailty (22.7%; 21.2%–24.3%), cancer (9.9%; 8.8%–10.9%) and mental illness (9.7%; 8.5%–11.0%) were the three most common in the survey (data not shown).

Sociodemographic characteristics

The mean age of DD caregivers at the time of the survey was 45.7 years, and 58.9% were female. About one-fifth identified as a visible minority, 55.7% had a postsecondary education and 59.1% were employed (Table 1).

Table 1. Sociodemographic characteristics, care provided, health status, impacts of caregiving, supports and unmet support needs of DD caregivers,^{Footnote a} other caregivers^{Footnote b} and non-caregivers,^{Footnote c} Canada (excluding territories), 2018

Variable	DD caregivers,Footnote a % (95% CI)	Other caregivers,Footnote b % (95% CI)	Non-caregivers,Footnote c % (95% CI)
Sociodemographic characteristics
Mean age, years	45.7 (42.3–49.2)	49.2 (48.4–49.9)	46.1 (45.9–46.3)
Sex
Female	58.9 (48.6–69.2)	53.8 (52.0–55.5)	49.5 (48.9–50.1)
Male	41.1 (30.8–51.4)	46.2 (44.5–48.0)	50.5 (49.9–51.1)
EthnicityFootnote d
Visible minority	20.8 (12.3–29.2)Footnote E	16.7 (15.0–18.4)	25.0 (23.8–26.1)
Not visible minority	79.2 (70.8–87.7)	83.3 (81.6–85.0)	75.0 (73.9–76.2)
Highest level of education
High school or less than high school	44.3 (33.8–54.9)	36.6 (34.7–38.5)	42.2 (41.0–43.3)
Postsecondary	55.7 (45.1–66.2)	63.4 (61.5–65.3)	57.8 (56.7–59.0)
Employment
Employed (worked or absent from a job in the previous week)	59.1 (48.6–69.6)	61.2 (59.5–63.0)	61.3 (60.2–62.4)
Unemployed (did not have a job in the previous week)	40.9 (30.4–51.4)	38.8 (37.0–40.5)	38.7 (37.6–39.8)
Mean age of care receiver, years	22.5 (19.5–25.4)	68.9 (68.0–69.8)	NA
Sex of care receiver
Female	35.8 (26.0–45.6)	63.3 (61.5–65.1)	NA
Male	64.2 (54.4–74.0)	36.7 (34.9–38.5)	NA
Relationship of care receiver to caregiver
Child of caregiver	62.2 (52.8–71.7)	5.5 (4.7–6.2)	NA
Sibling of caregiver	20.8 (11.5–30.0)Footnote E	4.7 (3.9–5.5)	NA
Grandchild of caregiver	5.6 (2.4–8.8)Footnote E	Footnote F	NA
OtherFootnote e	11.4 (6.4–16.4)Footnote E	89.2 (88.1–90.4)	NA
Living situation
Caregiver living in same household as care receiver	79.2 (72.3–86.1)	33.6 (31.7–35.5)	NA
Caregiver and care receiver living in different households	20.8 (13.9–27.7)Footnote E	66.4 (64.5–68.3)	NA
Care provided
Care receiver has at least one other caregiver (paid or unpaid)
Yes	83.9 (76.3–91.6)	71.1 (69.3–73.0)	NA
No or don’t know	16.1 (8.4–23.7)Footnote E	28.9 (27.0–30.7)	NA
Mean hours of caregiving per week	29.1 (22.7–35.5)	13.4 (12.5–14.2)	NA
Help with transportation
Yes	86.2 (79.1–93.3)	72.7 (70.9–74.4)	NA
No	13.8 (6.7–20.9)Footnote E	27.3 (25.6–29.1)	NA
Help with meal preparation, meal clean-up, house cleaning, laundry or sewing
Yes	80.0 (72.4–87.5)	55.3 (53.5–57.1)	NA
No	20.0 (12.5–27.6)Footnote E	44.7 (42.9–46.5)	NA
Help with scheduling/coordinating care-related tasks
Yes	60.5 (50.2–70.8)	39.9 (38.2–41.7)	NA
No	39.5 (29.2–49.8)	60.1 (58.3–61.8)	NA
Help with personal care
Yes	58.8 (49.0–68.6)	27.7 (26.2–29.3)	NA
No	41.2 (31.4–51.0)	72.3 (70.7–73.8)	NA
Help with managing finances
Yes	44.5 (34.9–54.2)	32.0 (30.3–33.7)	NA
No	55.5 (45.8–65.1)	68.0 (66.3–69.7)	NA
Help with medical treatments/procedures
Yes	37.5 (28.5–46.4)	26.0 (24.5–27.5)	NA
No	62.5 (53.6–71.5)	74.0 (72.5–75.5)	NA
Health status
General health
Excellent/very good	40.5 (30.7–50.4)	48.5 (46.6–50.3)	58.6 (57.3–59.9)
Good	41.9 (32.0–51.8)	34.4 (32.7–36.1)	30.1 (28.9–31.3)
Fair/poor	17.5 (11.1–24.0)Footnote E	17.1 (15.8–18.5)	11.3 (10.6–12.1)
Mental health
Excellent/very good	45.7 (36.1–55.3)	51.9 (50.1–53.7)	64.1 (62.7–65.4)
Good	32.8 (24.1–41.5)	32.5 (30.8–34.2)	26.5 (25.3–27.7)
Fair/poor	21.5 (13.0–29.9)Footnote E	15.6 (14.2–17.0)	9.4 (8.6–10.2)
Stress
Most days not at all/not very stressful	25.8 (16.1–35.5)Footnote E	28.1 (26.5–29.6)	37.4 (36.2–38.6)
Most days a bit stressful	46.9 (37.2–56.5)	47.2 (45.4–49.0)	42.4 (41.2–43.6)
Most days quite a bit/extremely stressful	27.3 (19.4–35.2)	24.7 (23.2–26.3)	20.1 (19.1–21.2)
Life satisfactionFootnote f
Satisfied/very satisfied	77.2 (69.9–84.5)	80.5 (79.0–82.0)	86.9 (86.0–87.8)
Neither satisfied or dissatisfied	15.0 (8.4–21.7)Footnote E	10.2 (9.0–11.3)	7.2 (6.6–7.9)
Very dissatisfied/dissatisfied	7.8 (3.7–11.8)Footnote E	9.3 (8.2–10.5)	5.9 (5.2–6.5)
HappinessFootnote f
Happy and interested in life	50.9 (40.6–61.1)	58.4 (56.5–60.3)	64.4 (63.2–65.7)
Somewhat happy	42.1 (31.9–52.4)	33.8 (31.9–35.7)	29.9 (28.7–31.1)
Somewhat unhappy / unhappy with little interest in life / so unhappy life is not worthwhile	7.0 (2.7–11.3)Footnote E	7.8 (6.7–8.9)	5.6 (5.1–6.2)
Impacts of caregivingFootnote g
Feel worried or anxiousFootnote f
Yes	70.1 (59.0–81.2)	62.5 (60.3–64.7)	NA
No	29.9 (18.8–41.0)Footnote E	37.5 (35.3–39.7)	NA
Feel tired
Yes	68.0 (57.3–78.6)	59.4 (57.2–61.7)	NA
No	32.0 (21.4–42.7)Footnote E	40.6 (38.3–42.8)	NA
Feel overwhelmedFootnote f
Yes	57.8 (46.8–68.8)	42.5 (40.3–44.7)	NA
No	42.2 (31.2–53.2)	57.5 (55.3–59.7)	NA
Experience disturbed sleepFootnote f
Yes	48.6 (37.9–59.2)	41.1 (38.8–43.3)	NA
No	51.4 (40.8–62.1)	58.9 (56.7–61.2)	NA
Feel short-tempered or irritableFootnote f
Yes	45.3 (34.8–55.8)	42.7 (40.5–44.9)	NA
No	54.7 (44.2–65.2)	57.3 (55.1–59.5)	NA
Feel depressedFootnote f
Yes	28.7 (20.2–37.3)	26.1 (24.3–28.0)	NA
No	71.3 (62.7–79.8)	73.9 (72.0–75.7)	NA
Feel lonely or isolatedFootnote f
Yes	24.5 (16.3–32.7)Footnote E	24.3 (22.5–26.2)	NA
No	75.5 (67.3–83.7)	75.7 (73.8–77.5)	NA
Experience loss of appetiteFootnote f
Yes	15.6 (8.9–22.3)Footnote E	13.8 (12.4–15.2)	NA
No	84.4 (77.7–91.1)	86.2 (84.8–87.6)	NA
Feel resentfulFootnote f
Yes	15.1 (8.6–21.6)Footnote E	25.2 (23.5–27.0)	NA
No	84.9 (78.4–91.4)	74.8 (73.0–76.5)	NA
How rewarding have caregiving experiences beenFootnote f
Very rewarding/rewarding	68.3 (58.5–78.1)	54.2 (52.0–56.5)	NA
Somewhat/not at all rewarding	31.7 (21.9–41.5)	45.8 (43.5–48.0)	NA
Spend less time relaxing or taking care of self due to caregiving
Yes	67.0 (56.7–77.3)	58.7 (56.4–61.0)	NA
No	33.0 (22.7–43.3)	41.3 (39.0–43.6)	NA
Supports and unmet support needs
Care receiver also received help from professionalsFootnote h
Yes	73.9 (64.0–83.7)	60.0 (58.0–62.1)	NA
No or don’t know	26.1 (16.3–36.0)Footnote E	40.0 (37.9–42.0)	NA
Caregiver received support in caregiving dutiesFootnote i
Yes	87.4 (81.3–93.6)	70.7 (69.1–72.2)	NA
No	12.6 (6.4–18.7)Footnote E	29.3 (27.8–30.9)	NA
Unmet support needsFootnote j
Yes	46.8 (37.0–56.6)	29.6 (27.8–31.5)	NA
No	53.2 (43.4–63.0)	70.4 (68.5–72.2)	NA

The mean age of the care receivers with DD was 22.5 years (Table 1). Almost two-thirds were male (64.2%) and the children of the caregivers (62.2%) versus another relationship. More than three-quarters lived in the same household as the caregiver (79.2%) and had at least one other caregiver, paid or unpaid (83.9%). Compared with care receivers with other conditions, those with DD were significantly younger and significantly more likely to be male, children of the caregiver, living in the same household as the caregiver and have at least one other caregiver.

Care provided

DD caregivers provided an average of 29 hours of care per week (Table 1), most commonly help with transportation (86.2%); meal preparation, meal clean-up, house cleaning, laundry or sewing (80.0%); and scheduling or coordinating care-related tasks (60.5%). Compared with other caregivers, DD caregivers provided significantly more hours of care per week (29.1 vs. 13.4 hours) and were significantly more likely to provide each type of care.

Health status

Less than half of DD caregivers described their general health and mental health as excellent or very good (40.5% and 45.7%, respectively), and only one-quarter reported that most days were not at all or not very stressful (Table 1). However, more than three-quarters reported that they were satisfied or very satisfied with life (77.2%), and about half indicated that they were happy and interested in life (50.9%). Compared with non-caregivers, DD caregivers reported less optimal general and mental health, more stress, and less life satisfaction and happiness.

Impacts of caregiving

DD caregivers most commonly described feeling worried or anxious as a result of their caregiving responsibilities (70.1%); having rewarding or very rewarding caregiving experiences (68.3%); feeling tired as a result of their caregiving duties (68.0%); and spending less time relaxing or taking care of themselves due to their caregiving (67.0%) (Table 1). While other caregivers experienced similar impacts, a significantly higher proportion of DD caregivers reported feeling overwhelmed (57.8% vs. 42.5%). Conversely, a significantly smaller proportion of DD caregivers reported feeling resentful (15.1% vs. 25.2% for other caregivers), and a significantly higher proportion found caregiving to be very rewarding or rewarding (68.3% vs. 54.2% for other caregivers).

Supports and unmet support needs

Almost three-quarters (73.9%) of care receivers with DD who did not live in an institution also received help from professionals (i.e. paid workers or organizations), and most (87.4%) DD caregivers received some type of support to accommodate their caregiving duties (Table 1). Despite this, almost half (46.8%) of DD caregivers reported unmet support needs, with the most common being financial support, government assistance or tax credit, occasional relief or respite care, home care or support, and emotional support or counselling (Figure 1). Compared with other caregivers, a significantly higher proportion of DD caregivers received help from professionals and some type of support in their caregiving duties, yet still had unmet support needs (Table 1).

Figure 1 : Descriptive text

Types of unmet support needs among caregivers, Canada (excluding territories), 2018

Type of unmet support need	DD Caregivers – Percent (%) (95% confidence interval)	Non-DD Caregivers – Percent (%) (95% confidence interval)
Financial support, government assistance, or tax credit	81.7 (73.3, 90.2)	66.9 (63.7, 70.1)
Occasional relief or respite	54.1 (41.3, 66.8)	28 (24.8, 31.1)
Home care or support	51.1 (37.9, 64.4)	38.9 (35.6, 42.3)
Emotional support or counselling	50.2 (36.9, 63.6)	33.5 (30, 36.9)
Help from medical professional(s)	44.4 (30.5, 58.3)	35.3 (32, 38.6)
Volunteer or community services	40.8 (26.6, 55)Footnote E	25.2 (22.1, 28.3)
Information or advice	40.1 (27, 53.1)Footnote E	38.7 (35.1, 42.2)
Other	13.5 (5.3, 21.7)Footnote E	15.8 (13.5, 18)

Source: 2018 General Social Survey – Caregiving and Care Receiving.^{Footnote 12}
Abbreviations: CI, confidence interval; DD, developmental disabilities or disorders.
Notes: Percentages and 95% CIs are based on weighted data. Error bars represent the associated 95% CIs, defined as an estimated range of values that is likely to include the true value 19 times out of 20. “DD caregivers” are caregivers of individuals with DD, and “other caregivers” are caregivers of individuals with conditions other than DD.
^E Use with caution.

Discussion

This is the first study to use data from the GSS to report on the characteristics of DD caregivers in Canada and the impacts of their caregiving experiences. We found the proportion of DD caregivers with optimal health to be smaller than the proportion of non-caregivers with optimal health; more than two-thirds of DD caregivers felt worried or anxious and felt tired as a result of their caregiving roles. Almost half also reported various unmet support needs, with financial support, occasional relief or respite care, and home care or support the most common. Despite these challenges, many DD caregivers found their caregiving experiences rewarding.

Previous Canadian and international studies have also shown that caregiving for individuals with DD can negatively affect caregivers’ mental and physical health, with effects varying with the caregiver, care receiver, family characteristics and circumstances such as caregiver income, the care receiver’s age and the number of care receivers with disabilities being looked after by each caregiver, and barriers to accessing services and supports.^{Footnote 5Footnote 9Footnote 10Footnote 11Footnote 15Footnote 16} We found that DD caregivers were more likely than other caregivers to care for their own children and for younger individuals, to live in the same household as the care recipient and to have the support of at least one additional caregiver. DD caregivers also provided more hours of care per week than other caregivers. These differences in demographics and circumstances may have important implications on the experience and impacts of caregiving.^{Footnote 15} However, exploring the specific factors associated with the effects of caregiving was beyond the scope of this study.

Prior investigations have identified unmet support needs for both individuals with DD and their caregivers, with inadequate support partly explaining why families are often negatively affected as a result of their children’s disabilities.^{Footnote 17Footnote 18} A recent survey of caregivers found the most frequently reported support needs to be related to mental health and finances, with variations across sociodemographic groups.^{Footnote 1} Our study also found that financial support was the most commonly reported unmet need, followed by occasional relief or respite care, home care or support, as well as emotional support or counselling. Financial credits^{Footnote 19Footnote 20Footnote 21} and organizations that offer education and training, peer support, advocacy and counselling opportunities for caregivers are available in Canada, although eligibility and availability vary depending on the caregiver’s situation.

Although research often focuses on the burdens of caregiving, previous studies have shown that parents of children with DD report positive aspects of their caregiving experiences, seeing their child as a source of happiness, personal strength and growth, and family closeness.^{Footnote 22Footnote 23} These perceptions, which mirror our findings of more rewarding caregiving experiences among DD caregivers, have been linked to caregivers’ healthy coping strategies and access to caregiving supports.^{Footnote 23}

Strengths and limitations

This study used data from the 2018 GSS, a large, population-based survey with weighted estimates representative of the target population; however, some limitations are worth noting. First, the survey did not include the territories, limiting the generalizability of the findings. Second, the study sample size prevented us from disaggregating some sociodemographic characteristics such as ethnicity and Indigeneity. Third, the survey did not capture specific types of DD; it was therefore not possible to examine the differential impacts of specific DD on caregivers’ experiences. Lastly, while non-overlapping CIs indicate significant differences, overlapping CIs do not necessarily imply a lack of difference. However, the use of this conservative approach minimizes drawing erroneous conclusions of significance. Further, the small sample of DD caregivers resulted in wider CIs, potentially limiting our ability to detect significant differences.

The findings from this study reflect the experiences of DD caregivers prior to the COVID-19 pandemic. The pandemic, particularly early on, frequently exacerbated caregiving challenges through disruptions to routines, education, services or supports.^{Footnote 24Footnote 25Footnote 26Footnote 27Footnote 28}

Conclusion

Despite the negative impacts of caregiving, such as worse general and mental health, a higher proportion of DD caregivers than of other caregivers described their caregiving experiences as rewarding. Still, a large proportion of DD caregivers had unmet support needs. These findings underscore the importance of supports and services for DD caregivers to manage the challenges and enhance the positive aspects of caregiving.

Future cycles of the GSS will allow for monitoring of the burden of caregiving on this population over time. Additional research could examine the varied impacts on caregivers of individuals with different types of DD and explore differences in experiences by caregiver, care receiver and family demographics and circumstances.

Funding

None.

Conflicts of interest

The authors have no conflicts of interest.

Authors’ contributions and statement

• SP: Conceptualization, formal analysis, writing – original draft, writing – review and editing.
• SO: Conceptualization, writing – original draft, writing – review and editing.
• SS: Visualization, writing – original draft, writing – review and editing.

All authors approved the final version of this manuscript.

The content and views expressed in this article are those of the authors and do not necessarily reflect those of the Government of Canada.

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