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MS Caregiver Burdens Greater than the General Family Caregiver

Posted May 14 2012 9:00am

Multiple Sclerosis Caregivers 2012 is a report based on a survey conducted by the National Alliance for Caregiving with support from the National MS Society that reveals that the physical, mental and financial burdens on family caregivers of people with MS are significantly greater than the general family caregiving population.
  • Half of MS patients experience “mental confusion” that negatively impacts caregivers in regards to their own mental health (43%) and overall financial situation (47%). 
    In addition, 86% of family caregivers of people with MS indicated needing assistance in funding to pay for in-home care to help keep their loved one home and out of a long-term care facility.
  • Half of MS caregivers see the day when long-term care facilities are required - and the top triggering event in the need for a long-term care facility is the need for 24 hour care .

  • Most caregivers of people with MS use the internet to search for information about the disease and how to care for someone (94%).  Less than half found the information helpful. 
The type of care provided by family caregivers of people with MS is assisting with a wide variety of Activities of Daily Living (ADLs) - personal care, including bathing, dressing, feeding, and toileting- and Instrumental Activities of Daily Living (IADLs), such as housekeeping, transporting to the doctor, cooking, and handling finances.
The most-commonly felt emotion upon their care recipient’s diagnosis with MS was compassion, followed closely by fear and anxiety.  Half of caregivers of people with MS stated that their personal relationship with their loved one has improved and three out of four caregivers indicated that becoming a caregiver to their loved one has made them closer.  The long life cycle of the disease suggests the total number of years one serves as a caregiver will be significantly longer than caregivers in general. Already, MS Caregivers have been providing care for 9 years compared to less than 5 years for all other caregivers. The average age of all care recipients is 61, but the average age of MS care recipients is 50 and was diagnosed over 12 years ago. The mean duration of MS is 30 years, and it typically reduces life spans by 5-10 years.  “The length of caring for someone with multiple sclerosis points to a real need for assistance for these individuals from family, friends, employers and social service programs. With more support for these family caregivers, more people living with this debilitating disease will be able to remain with their loved ones for a longer period of time," said Gail Hunt, President & CEO of the National Alliance for Caregiving. Find the full report .
It is clear that caregiving is a burden to many and while MS caregivers have it worse, it is no picnic for others. With caregiving comes reward. But we also need to ban together as a society to provide relief! 
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