The Impact on the individual
Living with multiple sclerosis not only imposes financial strain on the patients and their families but also impacts the quality of life of all those involved. People with multiple sclerosis are constantly in need of assistance with daily living tasks as a result of their cognitive and functional impairments, and for many this care is provided by informal caregivers; individuals who take care of the patient without being paid for their services. Typically this group would include spouses, offspring, siblings or other relatives.
Both the patient and carers are placed under immense strain and burden of the disease. The aspects of stress and anxiety are multifaceted for MS patients and their caregivers. Caregivers often face heightened anxiety and physical burden when taking care of MS patients and the impact worsens with the severity of the disease. Stress levels are highest in caregivers where the patient has severe impairments.
For MS patients there is also a reduction in the quality of life as the disease progresses. With daily tasks becoming more challenging progressively, patients can go into depression leading to extreme psychological and emotional stress development. Research has shown that MS patients experience a deterioration in their quality of life primarily based on their physical limitations which increase as the condition progresses and impairments become more serious.
The Impact on family and friends
Likewise caring for someone with a chronic illness can also impact the caregivers’ physical and emotional health, restrict their social life and affect their monetary status with cost burdens associated with treatment of the disease.
Many of the concerns that can impact family life, relations and social life for both the patient and carers can include various aspects of emotional distress, behaviour changes, general health, greater stress levels, financial strain and physical strain.
While patients experience these due to their growing limited physical functioning and dependency on others, overwhelming physical and mental strain for caregivers can result in severe depression for partners heightening their dissatisfaction with their financial management, family relations, social relations and life as a whole. Partners and spouses may experience a loss of intimacy while others may develop negative feelings as the duration of the disease prolongs. Many carers also have to give up or cut short their participation in the work field.
Common areas that impact strain levels for carer family member can include disturbances to regular sleep patterns, a sense of confinement and isolation from social events, making unprecedented changes in personal plans as well as making work adjustments to accommodate the needs of the patient.
For many caregivers these burdens will result in negative health outcomes which can either be mental health issues or physical health problems faced due to caring for a multiple sclerosis patient over time. However, even in the early stages after diagnosis both patients and caregivers can experience substantial levels of distress and anxiety.
According to statistics collected, many caregivers were reported to have developed various stress related health conditions such as high blood pressure, rising cholesterol levels, chronic headaches, disturbed sleep and depression or anxiety.
1) Economic Impact of Multiple Sclerosis in 2010 Australian MS Longitudinal Study: http://www.msnetwork.org/library/Economic%20Impact%20of%20MS%20in%202010.pdf
2) Global Economic Impact of Multiple Sclerosis: http://www.msif.org/includes/documents/cm_docs/2011/g/global_economic_impact_of_ms.pdf?f=1