Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study

Lori A. Mitchell, John Hirdes, Jeff W. Poss, Caroline Slegers-Boyd, Hilary Caldarelli, Lynn Martin

Individuals living in the community with neurological conditions receive the majority of their care from informal caregivers. The purpose of this project was to provide a profile of caregivers of home care clients with neurological conditions. The study also examined prevalence of caregiver distress and the association between neurological conditions and other client and caregiver characteristics with distress. The study population included Canadian home care clients in the Winnipeg Regional Health Authority in Manitoba and in the province of Ontario. Clients with RAI-Home Care (RAI-HC) assessment data from 2003 to 2010 were examined. Neurological conditions of interest included Alzheimer's disease and related dementias, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson's disease, Huntington disease, epilepsy, muscular dystrophy, cerebral palsy, traumatic brain injury, spinal cord injury, and stroke. Descriptive statistics were analyzed to describe home care client characteristics and caregiver characteristics for each neurological condition. Logistic regression analysis was used to identify risk factors associated with caregiver distress. A substantial proportion of home care clients were found to have one or more of the neurological conditions (38.8 % to 41.9 %). Caregiver distress was twice as prevalent among caregivers of clients with neurological conditions (28.0 %). The largest associations with caregiver distress were the amount of informal care hours provided in a week and the MAPLe algorithm, an indicator of a client's level of priority for care. After adjustment for client characteristics, Huntington disease was the neurological condition most strongly associated with caregiver distress. However, clients' clinical characteristics and informal care hours had a stronger association with caregiver distress than the presence of a neurological condition. Provision of formal home care services provided a protective effect from caregiver distress. Neurological conditions are common among home care clients and a significant proportion of informal caregivers providing care to these clients experience distress. The complexity of clients with neurological conditions suggests the need for multicomponent support strategies for informal caregivers.