Caregiver Costs in Post-Stroke Spasticity

Stroke has many long-term repercussions, but the effect on informal caregivers is sometimes overlooked. A new study has drawn attention to the issue by describing the direct and indirect costs of caring for someone with post-stroke spasticity.

It is the first study to put a number on the economic burden of caring for someone with post stroke spacticity, with results suggesting a financial loss to caregivers of over $10,000 per year. The study was published online in Clinical Interventions in Aging. 

“This study found that caregivers spent a great amount of time helping stroke survivors with post-stroke spaticity with medical care, performing various physical tasks, and providing emotional support. Most tasks were perceived to be of mild-to-moderate difficulty by caregivers, although the amount of time spent performing these tasks was perceived as more burdensome,” wrote lead author Richard Zorowitz, MD, of Johns Hopkins Bayview Medical Center (Baltimore, MD), and colleagues.

Stroke is the leading cause of long-term disability in the US. Almost 17% of stroke survivors develop post-stroke spasticity, leading to pain and movement problems that can interfere with activities of daily living, according to background information in the article.

Family members, sometimes thought of as “informal caregivers” because they do not receive remuneration for their services, often provide home care for stroke survivors.  Such caregiving has been linked to significant burden, such as depression, anxiety, and lost work productivity. The economic costs, though, have not been well described.

In the study, researchers conducted an internet survey of 153 informal caregivers (71% female, 78% white, mean age 51.6 years) who provided ≥6 months of care without remuneration to someone with post-stroke spasticity.  Participants were part of the 2008 US National Health and Wellness Survey (NHWS) and the Ailment Panel of Lightspeed Research (Warren, NJ), both representative of the US population. The survey evaluated caregiving time and difficulty using the Oberst Caregiver Burden Scale, which rates caregiving tasks using scores ranging from 15-75 (a higher score represents greater caregiver burden).  Researchers used standardized questionnaires to evaluate impairment in work productivity and activity limitations.  They also looked at work-related restriction and associated financial losses.

Caregivers had been providing care for a median of five years and spent an average of 27.4 hours per week providing care.

Key results:

• Mean Oberst Caregiver Burden scores:

♦ Time: 46.1

♦ Difficulty: 32.4

• Top five symptoms in the last month: headache (64%), sleep difficulties (63%), anxiety/nervousness (49%), lightheadedness (29%), stomach pain (29%)

• Top three diagnoses: high blood pressure (42%), high cholesterol (41%), depression (22%)

• Employed caregivers (n=71):

♦ 32% overall work restriction

♦ 9% absenteeism (time missed from work)

♦ 27% presenteeism (restriction while at work)

♦ Caregiver characteristics, lack of nursing home coverage, and level of stroke survivors’ disability predicted work restriction

• Mean total lost-productivity cost per employed caregiver: $835/month, >$10,000/year

• Personal travel time and out-of-pocket expenditures added $5,669 per caregiver per year

“[T]he results of this study highlight the substantial burden of post-stroke spasticity caregiving responsibilities. Easing the burden for these caregivers may have a considerable societal impact, from a humanistic and economic standpoint,” the authors concluded, “Employed caregivers should be encouraged to consider Family Medical Leave Act provisions for unpaid leave, and seek professional help to bolster retirement savings and investments. Also, employers should be encouraged to offer well-designed and flexible work option plans that may improve the work productivity of employed caregivers of post-stroke spasticity survivors.”

Take-home Points

• Caregivers of people with post-stroke spasticity report substantial caregiver burden.

• Employed caregivers report 32% overall work restriction, 9% absenteeism, and 27% restriction while at work.

• Mean total lost productivity cost for employed caregivers is $835 per month and >$10,000 annually.

• Family Medical Leave Act for unpaid leave, bolstering retirement savings and investments, and flexible work options provided by employers may help improve caregiver burden and its related societal impact.

Reference: Ganapathy V, et al. Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity. Clin Interv Aging. 2015; 10: 1793–1802. Epub ahead of print 2015 Nov 6.