The Labour Supply of Unpaid Caregivers in Canada, Doctor of Philosophy (PhD), Meredith Lenore Lilly, Department of Health Policy, Management and Evaluation, University of Toronto, 2008. As medical care increasingly shifts from the hospital to the home, responsibility for care has also shifted from the state and paid care, to the family and unpaid care. Unpaid caregivers are family members and friends who provide homecare services to recipients in their place of residence without financial compensation, as a result of their close personal relationships. This research tests the multiple hypotheses that unpaid caregiving has an impact on (1) the probability of labour force participation (LFP); (2) hours of labour force work; and (3) earnings by caregivers in Canada. We analyzed the 1996 and 2002 General Social Surveys, applying multivariate probit, logistic, and OLS regression analyses to four equations: 1) the probability of labour force participation; 2) the hourly wage; 3) weekly hours of labour market work; and 4) the probability of being an unpaid caregiver. Results indicate that unpaid caregiving was negatively associated with labour force participation; however, the impact on hours of labour market work and wages was uncertain. Women and men caregivers were impacted differently: only caregiving men in 1996 had significantly lower wages than non-caregivers, and only women in 1996 worked significantly fewer hours in the labour market. When caregiving was defined broadly, only men in 1996 were significantly less likely to be employed than non-caregivers. Yet when we controlled for caregiving intensity in 2002, both male and female primary caregivers were much less likely to be in the labour force than non-caregivers, while secondary caregivers were no less likely to be employed than non-caregivers. We conclude that when caregiving responsibilities are relatively small, individuals seem able to balance both caregiving with employment. Yet when caregiving commitments become heavy, it becomes increasingly difficult to balance employment with caregiving. We make a number of policy recommendations ranging from improving caregiver access to financial supports, formal care and respite services, particularly for primary caregivers. We also encourage the development of workplace legislation and caregiver friendly workplaces for the majority of caregivers who remain in the labour market.

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.