CAREGIVER BURDEN
It is estimated that around 58% of MS caregivers are informal family members and loved ones (Maguire, R, 2020). MS can affect people of all ages and is becoming more common among the younger population (Hunter, S.F. 2016). Many carers can be parents or friends, depending on the age of diagnosis. The progression of the disease can worsen with age, so many spousal carers may themselves have a disability or health problems, and may struggle to cope with the demands of a caring role.
MENTAL HEALTH OF THE CAREGIVER
Caring for patients with MS has been shown to lead to poor physical health and clinically relevant anxiety and depression. For example, one study determined that carers overall suffered more health problems than the non caring population. Further, when examined using the Hospital Anxiety and Depression Scale (HADS), 68% experience anxiety, and more than 44% pathological depression (Giordano, A. et al, 2018).
In addition, carers may face a financial burden by taking time off of work to assist with caregiving. This can add pressure and strain to familial dynamics and cause contention. Further, caregiver themselves may have to miss out on valuable time attending social events and doing the things they enjoy. However, the subjective experiences of caregivers when asked about their experiences, found that overall they were happy to be able to offer assistance and support loved ones, but that a greater amount of time spent caring was associated with emotional strain. This highlights how a large reason for caregiving stress was due to social pressure or a lack of social support they endure outside of the home.
GETTING HELP & SUPPORT
If you are caring for a loved one with MS, then it is important to recognise when you need help. Whatever your situation, you can get help tailored to your individual needs. If you are suffering from poor mental health, or would like to talk to someone about your role as a carer, you can find local support.
Help with finding support can be found through the MS-UK Helpline on 0800 783 0518 or email at info@ms-uk.org.
This webinar presented by Anna Whiting Sorrell, MPA, took place during the recent COVID 19 pandemic. It highlights the additional pressures encountered by the caregiving community during this time. It discusses ways in which we may meet the needs of caregivers, and that they have an opportunity to focus on their own self care (CMSHHSgov, 2022).