The progressive disabling effect of PD on an individual means that they will almost inevitably require some form of care, usually provided by a relative or friend.1,4 The caregiving role is all-encompassing as carers provide wide-ranging physical, emotional, and social support to people living with PD.1,4 As the disease progresses and patients gradually lose their ability to perform everyday tasks, such care becomes increasingly burdensome, and impacts greatly on a caregiver’s quality of life.1,4
Caregivers may suffer from stress and other health problems, experience financial difficulties, and feel that they are neglecting other areas of responsibility.1,4 It is important to provide support and education to caregivers, so that they can maximise their own quality of life, and that of the patient for whom they care.1,4,8,9
References:
1.Peters M. Quality of life and burden in caregivers for patients with PD. Focus on PD 2014; 24 (1): 44–48.
2.Hand A, Oates LL, Gray WK, Walker RW. The role and profile of the informal carer in meeting the needs of people with advancing Parkinson’s disease. Aging Ment Health 2019; 23 (3): 337–344.
3.Mosley PE, Moodie R, Dissanayaka N. Caregiver burden in Parkinson disease: a critical review of recent literature. J Geriatr Psychiatry Neurol 2017; 30 (5): 235–252.
4.Geerlings AD, Kapelle WM, Sederel CJ, et al. Caregiver burden in Parkinson’s disease: a mixed-methods study. BMC Med 2023; 21 (1): 247.
5.World Health Organization. Parkinson’s disease: a public health approach. Technical brief. World Health Organization, 2022.
6.Schiess N, Cataldi R, Okun MS, et al. Six action steps to address global disparities in Parkinson disease: a World Health Organization priority. JAMA Neurol 2022; 79 (9): 929–936.
7.Aarsland D, Brønnick K, Ehrt U, et al. Neuropsychiatric symptoms in patients with Parkinson’s disease and dementia: frequency, profile and associated caregiver stress. J Neurol Neurosurg Psychiatry 2007; 78 (1): 36–42.
8.Choo XY, Lim SY, Chinna K, et al. Understanding patients’ and caregivers’ perspectives and educational needs in Parkinson’s disease: a multi-ethnic Asian study. Neurol Sci 2020; 41 (10): 2831–2842.
9.Kluger BM, Hudson P, Hanson LC, et al. Palliative care to support the needs of adults with neurological disease. Lancet Neurol 2023; 22 (7): 619–631.
