Evaluating Impact of COVID-19 Pandemic on Informal Caregivers of Patients With Parkinson Disease

Informal caregivers of people with Parkinson disease residing in the United Kingdom discussed challenges faced in providing care during the COVID-19 pandemic, which included risk of infection, lack of access to care, and the impact of lockdown on engaging in activities of daily living.

Risk of infection and inadequate health care access were among several challenges described by informal caregivers that impeded their ability to manage the care of people with Parkinson disease (PwP) during the COVID-19 pandemic, according to study findings published recently in the Journal of Geriatric Psychiatry and Neurology.

Amid the pandemic, the number of informal caregivers in the United Kingdom increased from an approximate 9.1 million to 13.6 million. The impacts of SARS-CoV-2 infection risk and public health strategies employed to mitigate the spread of COVID-19 were highlighted by researchers as notable concerns for unpaid caregivers of PwP, who have an essential role in meeting the care needs of these patients.

“It has been argued that the requirement to adapt to novel situations and rules associated with public health strategies to reduce the spread of COVID-19 could elicit stressful situations for PwP due to cognitive inflexibility and difficulties in adapting to change,” they said.

“For example, a study conducted in Italy observed that PwP experienced significant reductions in physical exercise due to lockdown restrictions, which was associated with an increase in symptoms of depression and worsening of both motor and nonmotor symptoms of Parkinson disease (PD).”

The study authors conducted an analysis using a qualitative research design to specifically explore the experiences of informal caregivers of PwP, recruited via a larger longitudinal programme of research entitled The Northumbria Care Needs Project, on how the pandemic has impacted their role of caring for a relative with PD in their own home.

A series of 1:1 semi-structured interviews were conducted with 11 informal caregivers of PwP (mean [SD] age, 72.64 [8.94] years) between May and July 2021 to explore their experiences of providing informal care for PwP during the COVID-19 pandemic.

During recruitment of participants and data collection in the United Kingdom, people were not permitted to socialize with others from different households within indoor settings in April 2021. And in May 2021, indoor hospitality had reopened to the public in which groups of up to 6 people could meet. Social distancing measures were removed in England on July 19, 2021.

Findings of the analysis identified 3 key themes that illustrated how the COVID-19 pandemic had impacted informal caregivers of PwP:

  • Vulnerabilities to SARS-CoV-2: Participants discussed difficulties of providing informal care for loved ones with PD whilst acknowledging their own vulnerabilities to the virus and how engaging with media coverage and national briefings related to COVID-19 could have negative consequences on the mood of informal caregivers.
  • Home maintenance and activities of daily living: Participants noted difficulties that occurred during periods of lockdown in terms of completing home maintenance duties and supporting care recipients to engage in activities of daily living on an independent basis.
  • Engagement with health care services: Participants stated that the requirement to reduce interactions in the community meant that they relied on health care services to deliver home treatment for care recipients, but delays were experienced in the provision of home treatment and in receiving essential care from health care professionals, such as general practitioners and physiotherapists.

“It is essential that the lived experiences of informal caregivers inform the way in which social support and health care provision can be operationalized to ensure that familial carers have the resources to provide effective care for PwP within their homes in the post COVID-19 era,” concluded the study authors.


Rippon D, Hand A, Dismore L, Caiazza R. The impact of the COVID-19 pandemic on informal caregivers of people with Parkinson’s disease residing in the UK: a qualitative study. J Geriatr Psychiatry Neurol. Published online October 21, 2022. doi:10.1177/08919887221135555

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