Ms. Alore shared how brain fog can make patients feel forgetful and make them second guess their actions. They might misinterpret directions or have difficulty following group discussions.
She explained how brain fog can lead to social isolation, to safety concerns, to falling short of responsibilities (e.g., paying bills). “This brain fog isn’t just an annoying symptom,” said Ms. Alore. “It affects our home, our work, our personal lives and our health.”
Another speaker, Yen Chen, PhD, a research assistant professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan, partners with Ms. Alore on a cognitive rehabilitation program for patients with scleroderma, the Brain Boost Program. “Many scleroderma participants describe brain fog as one of their most bothersome symptoms,” she shared.
Dr. Chen also pointed out that in addition to these personal impacts, cognitive symptoms can make it harder for patients to manage their disease, for example, through missing medications or medical appointments.
Cognitive Dysfunction in Different Rheumatic Conditions
Researchers have begun studying cognitive dysfunction across a variety of conditions, including fibromyalgia, systemic lupus erythematosus, rheumatoid arthritis and scleroderma.1 Prevalence likely varies somewhat based on the specific disease, severity, comorbidities, medications, lifestyle choices and other factors, but much is still unknown.
One challenge assessing incidence and impact is that assessment for cognitive dysfunction hasn’t been standardized in this setting. Thus, some tests might miss milder levels of dysfunction, and some might not assess the key affected cognitive domains. Patient-reported outcomes can sometimes provide helpful insights, but these measures don’t always match up with objective tests in a laboratory setting.
Scientists have also studied the specific domains of cognition that seem to be most affected. These results should be interpreted in the light of tests and analyses in specific studies; however, broadly speaking, symptoms seem to most affect executive function and working memory, causing difficulties with concentration, attention, planning and organization.
Fibromyalgia
Daniel Whibley, PhD, assistant professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan, addressed some of these questions in the context of fibromyalgia. Around 70% of patients with fibromyalgia report cognitive symptoms, nicknamed fibrofog by the patient community.2
Dr. Whibley shared results of a study of 50 patients with fibromyalgia matched with 50 people without fibromyalgia. In a lab setting, the patients with fibromyalgia performed objectively worse across four different tests of cognitive function. In a real-word ambulatory setting, the patients with fibromyalgia reported poorer subjective cognition and performed more poorly on remote assessments of objective working memory via a smartphone app.2
Dr. Whibley also found that pain levels over the day in patients with fibromyalgia tracked with both poorer perceived cognitive functioning and slower processing speed. This is in line with other research showing the potential negative impact of chronic pain on cognitive functioning.3
This relates to the complicated nature of cognitive dysfunction, both in fibromyalgia and other conditions that can cause chronic pain. Dr. Whibley pointed out that pain, poor sleep, fatigue and mood can all interact in complex ways, and all can have negative impacts on cognitive function.
“Addressing cognitive symptoms may well have an impact on other troublesome symptoms of fibromyalgia,” said Dr. Whibley. “I’d argue that addressing cognition doesn’t only sharpen thinking, but it can also ease the experience of the illness itself.”
Rheumatoid Arthritis
Dr. Katz
Patti Katz, PhD, emerita professor in the Division of Rheumatology at the University of California, San Francisco, extensively reviewed the existing literature on perceived and objectively validated cognitive dysfunction in rheumatoid arthritis. “It’s a really understudied issue,” she said.
Dr. Katz pointed out several flaws, holes and potential biases in the scientific literature, for example, lack of consistency in assessment approaches and definitions of cognitive impairment, small sample sizes and lack of consideration of confounding variables. Because of this, the true prevalence is not well understood. Summarizing and synthesizing existing research, Dr. Katz said that cognitive dysfunction does appear to be more common in people with RA compared with people of a similar age in the general population.4-9
Dr. Katz also pointed to some of the factors associated with cognitive dysfunction in people with RA, some of which are also seen in the general populations. These include certain medications, such as oral glucocorticoids. Comorbid conditions, such as cardiovascular disease and cerebrovascular disease, increase risk. Depression is an especially important factor to treat and address, as it may sometimes partly manifest with impaired cognitive function. Lifestyle issues, especially poor sleep and low levels of physical activity, also seem to play a role.
Scleroderma
More than half of people with scleroderma may experience bothersome symptoms affecting their memory and executive function, with at least one study reporting this number at 87%. In addition to factors already discussed, patients with scleroderma may have additional disease-related factors related to cognitive dysfunction, such as poorer nutrition and decreased oxygen intake.10-13
Dr. Chen emphasized the importance of providing patients with compensatory strategies to help them better navigate their cognitive challenges. For example, establishing routines, setting reminders (e.g., on a phone) and making to-do lists can all help patients better manage their lives.
Relatedly, Dr. Chen discussed her work with the Brain Boost Program, designed as an eight-week online educational group-based program as part of a pilot randomized, controlled trial. Through the program, participants play online brain games to sharpen their mental acuity and also learn cognitive strategies and lifestyle modifications to help them better manage their situation. Although results of the trial are not yet available, many participants have shared enthusiastic responses.14
Management Considerations
Sometimes, just asking about potential cognitive symptoms is enough to begin a helpful discussion. Dr. Whibley also recommended the National Institutes of Health (NIH) Toolbox Cognition Battery as a resource to provide brief initial screening and assessment, although this shouldn’t replace more thorough testing when needed. Dr. Chen also recommended the cognitive function measure on PROMIS (Patient-Reported Outcomes Measurement Information System), which assesses an individual’s perceived cognitive abilities.
Dr. Katz noted that disease control is an important element of addressing cognitive concerns, as patients with higher inflammation and pain are likely to have greater problems with cognitive functioning. She also recommended minimizing steroid use, controlling comorbidities, especially cardiovascular disease, and treating such mental health issues as depression. Encouraging exercise and screening for sleep problems are also critical.
Dr. Chen also suggested involving occupational and/or physical therapists who can help provide specific cognitive aids and strategies, help patients manage their energy and tailor exercise programs to patients’ specific abilities. If available, cognitive rehabilitation programs can also be beneficial.
“One of the most powerful things we could do is to really validate patients’ experience and acknowledge that brain fog is real and help them to feel supported,” said Dr. Chen.
“Often brain fog is dismissed as laziness, depression or aging,” said Ms. Alore. “I ask you to create a safe space for patients to discuss any cognitive challenges that they may be experiencing.”
Ruth Jessen Hickman, MD, a graduate of the Indiana University School of Medicine, is a medical and science writer in Bloomington, Ind.
References
- Oláh C, Schwartz N, Denton C, et al. Cognitive dysfunction in autoimmune rheumatic diseases. Arthritis Res Ther. 2020 Apr 15;22(1):78.
- Kratz AL, Whibley D, Kim S, et al. Fibrofog in daily life: An examination of ambulatory subjective and objective cognitive function in fibromyalgia. Arthritis Care Res (Hoboken). 2020 Dec;72(12):1669–1677.
- Whibley D, Williams DA, Clauw DJ, et al. Within-day rhythms of pain and cognitive function in people with and without fibromyalgia: Synchronous or syncopated? Pain. 2022 Mar 1;163(3):474–482.
- Meade T, Manolios N, Cumming SR, et al. Cognitive impairment in rheumatoid arthritis: A systematic review. Arthritis Care Res (Hoboken). 2018 Jan;70(1):39–52.
- McDowell B, Marr C, Holmes C, et al. Prevalence of cognitive impairment in patients with rheumatoid arthritis: A cross sectional study. BMC Psychiatry. 2022 Dec 9;22(1):777.
- Vitturi BK, Nascimento BAC, Alves BR, et al. Cognitive impairment in patients with rheumatoid arthritis. J Clin Neurosci. 2019 Nov;69:81–87.
- Shin SY, Katz P, Wallhagen M, Julian L. Cognitive impairment in persons with rheumatoid arthritis. Arthritis Care Res (Hoboken). 2012 Aug;64(8):1144–1150.
- Pankowski D, Wytrychiewicz-Pankowska K, Janowski K, Pisula E. Cognitive impairment in patients with rheumatoid arthritis: A systematic review and meta-analysis. Joint Bone Spine. 2022 May;89(3):105298.
- Appenzeller S, Bertolo MB, Costallat LT. Cognitive impairment in rheumatoid arthritis. Methods Find Exp Clin Pharmacol. 2004 Jun;26(5):339–343.
- Chen YT, Lescoat A, Devine A, et al. Cognitive difficulties in people with systemic sclerosis: A qualitative study. Rheumatology (Oxford). 2022 Aug 30;61(9):3754–3765.
- Amaral TN, Peres FA, Lapa AT, et al. FRI0488 prevalence and clinical significance of cognitive impairment in systemic sclerosis. Ann Rheum Dis. 2015;74(Supp 2):605.
- Chen YT, Lescoat A, Khanna D, Murphy SL. Perceived cognitive function in people with systemic sclerosis: Associations with symptoms and daily life functioning. Arthritis Care Res (Hoboken). 2023 Aug;75(8):1706–1714.
- Khedr EM, El Fetoh NA, Gamal RM, et al. Evaluation of cognitive function in systemic sclerosis patients: A pilot study. Clin Rheumatol. 2020;39:1551–1559.
- National Institutes of Health. Brain Boost Program to improve cognitive function in people with systemic sclerosis. https://www.clinicaltrials.gov/study/NCT06880627.