The majority of carers who responded to the survey said they provide care all the time (68 percent), while a small number provide care when it is needed (18 percent) or once or twice daily (14 percent). Almost two-thirds of caregiver respondents provided all the care for the person with MS - 24 percent shared with a paid carer, while 14 percent shared with another family carer.
Although the majority of respondents provided care all the time and were the main caregiver, only 14 percent had had any training in their caring role. Promisingly, 64 percent of carers said they had the opportunity for a break if they wanted one, mainly through respite services or when family members could help, although some felt reluctant to leave the person they care for. Others had a break from caring when they were at work.
The biggest task carers said they help with is emotional support followed by shopping and domestic tasks, and transportation. Shopping and other domestics tasks and transportation were also identified as main tasks by people with MS. However, importantly just three percent said their carer provided emotional support. In general, carers felt they provided assistance in more tasks than people with MS thought they did.
Three quarters of people with MS who responded to the survey said their partner or spouse was their caregiver, and 65 percent need help from their carer all the time (28 percent) or once or twice daily (36 percent).
When asked whether the fact that assistance is required had altered the relationship between the person with MS and their caregiver, a similar proportion in both surveys felt their relationship had improved or not changed and slightly more in both surveys felt it had suffered .
In summary, many carers feel that an important part of their role is providing emotional support, while the perception on the part of the person with MS appear to be different. Further, training for people who provide care to loved ones is an important topic that requires attention. People are providing care, perhaps even technical in nature, without appropriate training.
Finally, while many carers are able to take advantage of respite, for others the only break from their caring role is while they are at their workplace, giving some insight into how challenging caregiving can be for many people.
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