Deriving Implications for Care Delivery in Parkinson’s Disease by Co-Diagnosing Caregivers as Invisible Patients

Abstract

For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

“…Thieken et al discussed the caregiver of PD patients as an “invisible patient” in their opinion paper [ 21 ]. The authors discuss the development of caregiver burden and the trajectory of PD in a very comprehensive way and conclude that holistic approaches will be needed in future care to also address the needs of the caregiver in the complex treatment of PD patients.…”

The Impact of the COVID-19 Pandemic on Informal Caregivers of People With Parkinson’s Disease Residing in the UK: A Qualitative Study

“… 70 This is concerning, given that care home placement can diverge from the wishes of informal caregivers of continuing to provide care for loved ones with Parkinson’s disease in their own homes. 71 Although the present study focussed on the experience of providing informal care to PwP during the global COVID-19 pandemic, the results indicate that the absence of family support may increase demands on informal caregivers in terms of ensuring effective household maintenance, caregiving and supporting PwP with ADLs in their own home.…”

Impacts of Perceived Choice on Physical Strain, Emotional Stress and Health among Caregivers

“…Without appropriate assistance and interventions, they may become invisible patients due to caregiving experiences and burden. 16…”