Being a caregiver to someone with Parkinson’s will cost you money. Why and how much? A recent research report attempted to find out, by comparing the financial situations of 1211 Parkinson’s caregivers in the USA to 6055 controls. The abstract’s concluding sentence reads, “Parkinson’s caregivers exhibited higher direct and indirect costs and greater income loss compared with matched controls.”
What are some of the problems? I’ll quote directly from the article:
“PD may present a substantial burden to the caregivers of PD patients. PD patients may need help with many aspects of life, including personal safety, mobility, transportation, medication compliance, daily activities, and social involvements. These challenges, along with the behavioral disturbances of PD patients and the long duration of the disease, can be very difficult for PD caregivers to manage, which may impact their [own] health outcomes and as a result increase health-care spending. In addition to the physical and mental tolls of caretaking, caregivers of PD patients face a significant economic burden because of the costs of caring, decreased work productivity, and reduced wages. … More than 25% of caregivers spend more than 70 hours per week caring for PD patients. Furthermore, a reported 26% of PD caretakers had to reduce or give up work, and 30.4% reported that their finances worsened as a result of caregiving.”
The authors of the current study examined the shifting financial conditions of PD caregivers over a five-year period – starting when the PD patient was diagnosed (called “the index year”). In all cases, the caregiver was employed in a Fortune 500 company and was receiving health insurance from his/her employer which covered the spouse or other family member with PD. The control group consisted of similar employees, except they did not have a spouse (or other family member) with PD. The massive data base that the researchers drew from included medical and drug claims, measure of work loss for the employee, and employer-reported income data. Controls “were randomly matched to PD caregivers in a 5:1 ratio exactly on sex, age, region [of the USA], and index year.”
What were some of the findings?
- “PD caregivers had significantly higher rates of several general caregiving-related comorbidities (backache, hypertension, gastroesophageal reflux disease [GERD]/heartburn, and irritable bowel syndrome.)”
- “PD caregivers had significantly higher mean total all-cause costs ($8999 vs $7117, respectively), mean all-cause medical costs ($7081 vs $5568), and mean comorbidity-related medical costs ($1589 vs $1228) compared with matched controls in the first year of the study period.”
- “In all five years, PD caregivers had significantly higher mean adjusted total out-of-pocket costs compared with controls.”
- While the “annual incomes of PD caregivers and controls in the index calendar year were similar ($69,630 vs $66,425, respectively)…the annual rate of income loss in the PD caregivers was more than twice the income loss in the controls (approximately $1200 vs $520 annually).” Note: I think the income loss for both groups was partially a result of age: Most (65%) of the caregivers and their matched controls were aged 55 – 64 years at the start of the five-year study period, meaning that people in both groups would retire from work or cut back on their hours. The study period also took place during a time of wage stagnation in the USA. Furthermore, many caregivers switched to lower-paying jobs that freed them to spend more time caregiving.
A final note from the authors concerns the fact that their study looks only at the financial and health burdens of caregivers during the first five years after a spouse or other family member is diagnosed with PD:
- “However, PD caregiver costs in this study may be lower than those incurred by caregivers of an average PD patient because…caregiver costs are likely to increase as PD advances. Among patients with advanced stages of PD, debilitating physical and neuro-psychological problems can increase the complexity of care. As PD progresses and oral medication such as levodopa becomes less effective, the independence of PD patients declines and patients often require full-time complex care that increases the burden on PD caregivers.”
As for my own case, it’s rather an anomaly. I’m the major breadwinner in the family, and my job covers my insurance as well as my husband’s. My husband and I each have our share of duties around the house (he does the laundry; I take out the garbage), but there’s one way in particular that he goes out of his way as my caregiver: Every Sunday he bakes a dozen or so chicken breasts so I always have something ready to eat for dinner during the week (he eats them, too – he knows how to cook them so they remain tender and juicy). Also on Sundays he hard boils and peels a dozen eggs – something I would struggle with on my own (peeling an egg). Thus I always have part of my breakfast ready when I stumble into the kitchen at around 4:00 a.m., which saves me time.
This is very nice of him – and I hope we can keep it up until I retire in 4-5 years.
Parkinson’s disease is the most common cause of parkinsonism, a category of neurological diseases that cause slowed movement. Parkinson’s disease was formally recognized in an 1817 paper, “An Essay on the Shaking Palsy,” by James Parkinson, MD, a London doctor and member of the Royal College of Surgeons. Dr. Parkinson (1755–1824) observed what are now known as the classic symptoms of Parkinson’s disease, including tremors, rigidity, and postural instability. He theorized that the disease developed because of a problem in the brain’s medulla region. You can also refer to this article which states all the necessary details about parkinson’s disease https://www.everydayhealth.com/parkinsons-disease/guide/