Caregiver Burden

A Parkinson’s diagnosis is not only a burden for the affected individual but also presents a psychological and social challenge that significantly impacts the life of the patient and their social circle. A frequently overlooked but essential aspect is the caregiver burden, which can have significant emotional, social, and physical effects on caregivers—an issue we aim to highlight in this article.

Emotional Burdens for the Patient

Patients diagnosed with Parkinson’s often experience the news as a shock. The prospect of a progressive, incurable illness frequently leads to anxiety and depression, which not only diminish quality of life but can also worsen the progression of the disease. The chronic strain from symptoms of the illness itself, or the feeling of being a “burden” to loved ones, can put patients in a vicious cycle of symptoms and stress. Studies show that common mental health challenges, such as depression and anxiety, can intensify the severity of symptoms, which in turn further affects well-being.

Impact on Social Environment and Family

The effects of Parkinson’s disease extend beyond the patient alone. Family members, and especially partners who often take on the primary responsibility for caregiving, experience a considerable emotional burden. This so-called “caregiver burden” encompasses a range of factors such as emotional exhaustion, social isolation, sleep disturbances, and physical strain due to caregiving tasks. Studies show that caregivers of Parkinson’s patients have an elevated risk of depression and anxiety disorders and often suffer from health issues themselves. This impact is intensified by the emotional closeness and sense of responsibility family members feel. An intense caregiving relationship can strain emotional bonds, as caregivers often feel they are neglecting themselves and their own needs.

Strategies for Supporting Caregivers

However, there are ways to alleviate the caregiver’s burden. Support groups, psychological support, and resilience training can help maintain caregivers’ mental health and provide them with coping strategies. Studies emphasize that maintaining social connections, taking breaks, and accepting external help are crucial for the caregiver’s emotional stability. Another step toward reducing the caregiver’s burden can be to enable the affected person to gain more independence in daily life. Our project, Parkinson Vibrating Socks aims to support Parkinson’s patients in managing their daily activities as effectively as possible and to help them regain a sense of personal efficacy.

References

https://www.ucihealth.org/blog/2018/09/parkinsons-behavior-changes

Aamodt WW, Kluger BM, Mirham M, et al. Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022. Journal of Geriatric Psychiatry and Neurology. 2024;37(2):96-113. doi:10.1177/08919887231195219

https://journals.sagepub.com/doi/full/10.1177/08919887231195219

Djamshidian, A., & Lees, A. J. (2014). Can stress trigger Parkinson's disease?. Journal of Neurology, Neurosurgery & Psychiatry, 85(8), 878-881.

https://jnnp.bmj.com/content/85/8/878