The report "Living with Multiple Sclerosis: The Carer's Perspective" shows the impact of long-term care for people with MS on their loved ones and is the first such document to analyze the situation of caregivers of patients on SM. The report was created thanks to the cooperation with the leading care organizations IACO (International Alliance of Carer Organizations) and Eurocarers.
The report "Living with Multiple Sclerosis (MS) - the carer's perspective" was prepared to compare the experiences of 1,050 carers of people with MS aged 18 and over, in seven countries: United States, Canada, United Kingdom, France , Germany, Italy and Spain.
The data contained therein were based on an online survey. The survey asked 32 questions focusing on three main issues: information about carers and people with MS, the impact of care on the lives of relatives, and solutions to the challenges of caring for people with MS.
Based on the results of the survey, it was found that almost half (48%) of the respondents became a carer of a person suffering from MS under the age of 35, and almost a third of them looked after such a person for at least 11 years or longer. Other, equally important results of the survey of carers are as follows:
- 43% of respondents admitted that the care provided has a significant impact on their emotional / mental he alth, and in 28% of respondents it affects their physical he alth.
- 34% of the respondents answered that caring for a person with MS has a significant impact on their financial situation, more than a third of the respondents (36%) quit their job for this reason; in this group, 84% of carers said that caring for someone with MS affects their work and career.
- Only 15% of caregivers participating in the study contacted other caregivers or patient organizations for help with their daily duties.
The report proves that MS is a disease for both patients and caregivers. MS significantly changes the life situation of the patient's relatives, at the same time showing the scale of unmet social and he alth needs.
- MS can be a devastating disease for both patients and their caregivers, who take more and more responsibilities as they look after the sick years as the disease progresses. Caring for someone with MS can have a profound impacton the physical and emotional he alth, financial and professional situation of the caregiver, said Nadine Henningsen, president of IACO. - It is not surprising that the results of this study confirm the fact that a large number of young people become caretakers - often in the period of shaping their own life path.
The report also includes recommendations for changes that could improve the situation of caregivers of people with MS. According to the authors of the document, it is to be a starting point for a discussion on the possibility of supporting caregivers whose voice has not been so much heard. It is also intended to encourage the MS community to actively seek solutions that provide more help for both people with multiple sclerosis and their carers.
The global premiere of the Merck-sponsored survey results took place at the 34th Congress of the European Committee for Treatment and Research In Multiple Sclerosis (ECTRIMS) in Berlin.
Documentary about the relationship between SM and emotions
As part of the MSInsideOut campaign to build a better understanding of SM, a documentary was produced called "Seeing MS from the Inside Out". Artists and representatives of the SM community worked together on the material. This is the first such document to show an artistic interpretation of the experiences of people affected by MS, be it the sick, caregiver or doctor.
The documentary "Seeing MS from the Inside Out" was produced by Shift.ms - a social network associating people with MS and Merck. The document contains three stories: Maria Florencii, a woman living in Argentina with MS, Jon Strum, a caregiver from the United States, and an Italian doctor, Dr. Luigi Lavorgna. Each of these people is accompanied by a local visual artist who, through emotional, wordless interpretation, tells their stories, reflecting the often difficult to explain nature of SM.
- In keeping with the wider mission of Shift.ms, this video presents individual stories in a way that is unique and innovative for the SM community. It is also a deeper look at aspects of MS that have not been widely discussed so far, as well as an interpretation of the unmet needs of people affected by the disease through art, said George Pepper, co-founder and president of Shift.ms. - By showing these stories to a wider audience, we will be able to draw attention to still existing problems, open the way to dialogue and raise awareness of MS in society.
Document versionEnglish was first shown at the 34th Congress of the European Committee for Treatment and Research In Multiple Sclerosis (ECTRIMS) in Berlin.