Cognitive Changes Are Most Challenging Symptom for Parkinson’s Care Partners, Research Reveals

Cognitive changes in people with Parkinson’s disease pose a substantial challenge for their care partners, new research suggests.

The findings were presented at the 2020 Congress of Parkinson’s Disease and Movement Disorders (held virtually due to the COVID-19 pandemic) by researchers from the Parkinson’s Foundation, in a poster titled, “The Care Partner Perspective: Most Challenging Parkinson’s Symptoms.”

Parkinson’s disease can manifest in a variety of motor and non-motor symptoms. In addition to the obvious toll these symptoms take on the person with the disease, a person’s Parkinson’s symptoms also can affect the well-being of their care partners (a broad term referring to people in the life of a person with Parkinson’s who help to provide care).

Understanding the ways in which different symptoms of Parkinson’s affect care partners is important for designing systems to provide support to these care partners, which ultimately can help inform optimal care for the patient.

The new findings come from data that is being collected through the 2020 Care Partner Summit | Cumbre Para Cuidadores (CPS), a free bilingual event hosted by the Parkinson’s Foundation that aims to provide resources and education to carers of people with Parkinson’s.

The data collection is an ongoing process; the current findings were based on a preliminary analysis of data from more than 1,000 care partners —  predominantly spouses and romantic partners of the person with Parkinson’s, as well as children, other family members, and friends.

The care partners were given a list of 14 common Parkinson’s symptoms — including walking difficulty, bradykinesia (slow movement), anxiety, cognitive changes, tremor, sleep disorders, and psychosis — and they were asked to pick up to three that they considered the “most challenging” for them as a care partner.

In the overall group, the three most commonly selected symptoms were cognitive changes, gait/walking changes and postural instability/balance problems.

Additional analyses assessed whether there were differences based on gender (of the person with Parkinson’s or the care partner) and age (of the care partner) or length of disease (for the person with Parkinson’s). These revealed some notable differences. For instance, care partners were more likely to report sleep disorders and fatigue as being challenging if the person they were caring for was a woman, while those caring for men were more likely to report balance problems as challenges.

Across all of these analyzed groups, cognitive changes were consistently ranked as one of the most challenging symptoms. This was the most commonly-selected symptom across all the gender analyses and all the disease durations. The only group for which cognitive changes was not the most common challenging symptom was for care partners ages 20 to 30.

“As a result of findings from the Care Partner Summit registration, cognitive changes seem to be a significant challenge for care partners regardless of length of disease, age of care partner and gender of both the care partner and [people with Parkinson’s], with 51% of responses of spouses/partners placing Cognitive Changes as one of the three most challenging symptoms,” the researchers concluded in the study.

“This helps the Parkinson’s Foundation in recognizing the topics which care partners would like to see addressed in future programming as well as how to provide resources to people caring for People with Parkinson’s on managing those difficult cognitive symptoms.”