ASSISTANCE ARRANGEMENTS AND USE OF SERVICES AMONG PERSONS WITH MULTIPLE-SCLEROSIS AND THEIR CAREGIVERS

A large population-based survey of persons with multiple sclerosis (MS ) and their caregivers was conducted in Ontario using self-completed m ailed questionnaires. The objectives included describing assistance ar rangements, needs, and use of and satisfaction with services, and comp aring perceptions of persons with MS and their caregivers. Response ra tes were 83% and 72% for those with MS and caregivers, respectively. B ased on 697 respondents with MS whose mean age is 48 years, 70% are fe male, and 75% are married. While 24% experience no mobility restrictio ns, the majority require some type of aid or a wheelchair for getting around. Among 345 caregivers, who have been providing care for 9 years on average, the majority are spouses. Caregivers report providing mor e frequent care than do persons with MS report receiving it, particula rly for the following activities of daily living: eating, meal prepara tion, and help with personal finances. Caregivers also report assistan ce of longer duration per day than do care recipients with MS. Frequen cy and duration of assistance are positively associated with increased MS symptom severity and reduced mobility. Generally there is no rural -urban disparity in service provision, utilization or satisfaction, an d although there is a wide range of service utilization, satisfaction is consistently high. Respite care is rarely used by caregivers. Use o f several services is positively associated with increased severity of MS symptoms and reduced mobility. Assistance arrangements and use of services, each from the point of view of persons with MS and their car egivers, must be taken into account in efforts to prolong home care an d to postpone early institutionalization of persons with MS.