Parkinson’s Caregiver Needs Prime Area for More Study, Scientists Say
More research is needed to develop models of how family caregiving tends to work in Parkinson’s disease and to test interventions aimed at offering support to caregivers.
That’s the argument made by a pair of scientists in the study, “Nursing research in caregivers of people with Parkinson’s disease from 2011 to 2021: A scoping review,” published in Applied Nursing Research.
Parkinson’s symptoms can make certain activities difficult or impossible to accomplish independently, and many patients rely on a caregiver to help them with day-to-day tasks, especially in later disease stages. Often, this caregiver is a spouse or other unpaid family member.
In recent years, research increasingly has focused on how Parkinson’s affects the lives of family members who find themselves in a caregiver role. Scientists’ reason that a better understanding of the obstacles facing caregivers could help to inform the resources most likely to be of help.
Much of this work is being done by nurse scientists, since nurses play a critical role in helping patients find ways to manage day-to-day life while living with a chronic disease. Here, two such scientists conducted a review of research undertaken by nurse scientists between 2011 and 2021.
“The purpose of this scoping review was to assess the state of empirical research studies related to caregivers of people with Parkinson’s Disease (PD) conducted by nurse scientists and their research teams during the 10-year period,” the scientists wrote. “The studies … were included in order to provide the perspectives of nursing care related to family caregiving in PD.”
Of the 29 studies in this review, most (70%) were published after 2015. Just over half — 15, or 51.7% — were conducted by researchers in the U.S. The remaining 14 were done by scientists across 11 other countries.
Most of the caregivers in the studies were spouses of the person with Parkinson’s. The most common variable being measured was caregiver strain, which was assessed in 12 of the 29 studies (41.4%).
“The topics and design of the studies varied; however, caregiver burden and strain were the main topic studies in this review,” the scientists wrote. They noted that many of these studies documented substantial strain in caregivers.
“In the advanced disability stages, family caregivers become more involved in daily management of PD symptoms such as providing direct care with medication and therapy regimens and are responsible for household management,” they wrote. “In some cases, caregivers become an ‘invisible patient’ due to limited time and resources to seek their own healthcare.”
Other topics addressed by fewer than five studies included caregiver preferences, support groups for caregivers, palliative care, caregivers’ knowledge, and quality of life. Three small studies also assessed interventions, mainly offering additional educational resources to caregivers.
“Lack of the nursing intervention research in PD caregiving calls for action to develop evidence-based multicomponent interventions to improve PD caregiver quality of life and health outcomes,” the scientists wrote.
Three studies looking at caregiver support considered that support from “family and friends played an important role” for those giving care, while “peer-led support groups provided an oasis for the informal, family caregivers.”
The two nurses stressed that more research in many of these areas could markedly improve care for families affected by Parkinson’s. For example, they noted a current lack of a theoretical framework for how family caregiving works in Parkinson’s, and how this contrasts with other diseases like Alzheimer’s. Building such a framework, they argued, could help clinicians offer better support where it is most likely to be needed.
“Better understanding of the process of decision-making in the advanced stages of PD could provide a framework for conversations and supporting decisions made by people with PD and caregivers in the palliative and end-of-life care,” the scientists wrote.
“Additionally, developing comprehensive, palliative care models is warranted to provide quality care throughout the journey of PD caregiving,” they added.