University of Utah neurologist and assistant professor Guillaume Lamotte, MD, MSc, wrote an editorial published in the journal Clinical Autonomic Research to discuss the results of a study that investigated the relationship between caregiver burden (physical, mental, social, and financial), and the severity of autonomic dysfunction (e.g., how the body regulate blood pressure and heart rate) in patients with Parkinson’s disease.
Previous studies have looked at the relationship between the severity of Parkinson’s disease and caregiver’s burden; however, there was little research on the impact of patients’ autonomic symptoms on caregiver’s burden. Cardiovascular autonomic failure can be seen in neurodegenerative diseases like Parkinson’s disease, making it an important area to study. Classically, it manifests with an abnormal drop in blood pressure when standing (orthostatic hypotension) which can cause dizziness, blurry vision, difficulty focusing, and fainting. Orthostatic hypotension has been associated with an increased risk of dementia, falls, and death in patients with Parkinson’s disease. When other parts of the autonomic nervous system are involved it can also manifest with constipation or difficulty with bladder control for example.
In a study published in Clinical Autonomic Research, Dr. Claudia Ledda and colleagues enrolled 36 patients with Parkinson’s disease (24 males and 12 females) and their informal caregivers (14 males and 22 females). The study revealed a higher caregiver burden in caregivers of patients with autonomic failure compared to caregivers of patients without autonomic failure. Cardiovascular autonomic failure was independently associated with tenfold higher odds of producing a moderate-to-severe caregiver burden. Therefore, clinicians need to detect and manage symptoms of autonomic failure in Parkinson’s disease to improve the patient’s quality of life and reduce caregiver burden.
In his editorial, Dr. Lamotte urges clinicians to not forget about the caregivers, who, in many ways, are their allies in care. Dr. Lamotte discusses other studies that have focused on caregivers of patients with dementia. These studies found that poor caregiver mental health was associated with (1) worse patient outcomes, (2) higher rates of emergency visits, and (3) increased mortality, possibly due to lower quality of care, damaged interpersonal relationships and social bonds, or higher patient stress related to caregiver burden or to the patient's perception of being a burden to the caregiver. Dr. Lamotte also warns, “If we are not vigilant, soon enough the caregiver becomes the patient.” Therefore, during a clinic visit, clinicians should pay attention to the caregivers’ well-being to prevent the erosion of the health of both the caregivers and the patients in the future. Dr. Lamotte hopes to see future collaborative studies investigating caregiver burden in various chronic illnesses. Innovative study designs could involve both the patients and their caregivers (for example, a study looking at the effect of exercise could benefit both the patients and caregivers).
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