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Homebound and Alone: Women With Advanced PD More Likely to Lack Caregiver

Allison Inserro
Female patients who are homebound with advanced Parkinson disease (PD) are more likely to lack any caregiver and more likely to be single or widowed, according to a report published this week.
Female patients who are homebound with advanced Parkinson disease (PD) are more likely to lack any caregiver and more likely to be single or widowed, according to a report published this week.

While this study is not the first to show sex-related disparities for women with PD, it does shed more light on the issue. Other work, including a multicenter international cohort study of patients with PD, also showed that women are at higher risk of poor access to caregivers. The Parkinson Foundation, too, notes that although women are at lower risk for PD, they report side effects more and have more fluctuations throughout the day.  

The authors of the current study say it highlights the need for health systems to support this vulnerable group of individuals, who are at greater risk for interruptions in care, and that care planning should incorporate knowledge of these sex-based differences in order to individualize treatment.1

In the early years of a PD diagnosis, women exhibit milder disease and are typically older than men when they first show signs of the disease; this may be possibly due to neuroprotective effects of estrogen, the researchers said.

That early advantage disappears, however, once the disease is full-blown. In addition, the longer life expectancy for women in general may explain the increased prevalence of homebound women with advanced PD. 

PD is known to have several gender-related differences in several areas, the authors noted, including a different response to levodopa, nonmotor symptoms, and quality of life, among others. Women are less likely to be treated by a neurologist or receive surgical interventions like deep brain stimulation in the United States.

In the current study, published in Clinical Interventions in Aging, researchers recruited 85 patients with advanced PD and related disorders into a home visiting program in New York City, the Edmond J. Safra Interdisciplinary Home Visit Program for Advanced Parkinson’s Disease.

Women made up a little more than half of the patients (52%), with 44 women compared with 41 men; the authors noted that in most studies conducted in outpatient settings, the prevalence of PD is higher in men than in women.

To be included, patients met Medicare homebound criteria and had to have 1 or more of the following risk factors for hospitalization or institutionalization: motor fluctuations, multi-morbidity, medication mismanagement, depression, anxiety, frequent hospitalizations, suspected elder abuse, caregiver burnout, or increased falls at home.

The analysis took place between February 2014 and July 2016 using data collected via the in-person interviews and chart review. The study consisted of home visits every 4 months by a movement disorders-trained neurologist, a nurse, and a social worker, and patients received a median of 3 visits (range 1-7).

At the first visit, the median age of the group was 79.6 (range 43.3-93.9, standard deviation 8.7), with no significant sex-related differences (female 79.4 years, male 77.2 years, P = .25).

PD was the most common diagnosis (79%), followed by dementia with Lewy bodies (5%), and other atypical parkinsonism (16%). Men were more likely to have a PD dementia diagnosis than women (17.1% vs 2.3%, P =.03). Women were more likely to live alone (18.1% of women had no caregiver vs 2.4% of men, P = .05).

Comparing caregiver types, 70.7% of men identified a spouse, partner, or significant other acting as a caregiver, compared with 27.3% of women (P <.01). 

Perhaps not surprisingly, a study published last year found that women use advanced nursing care (nursing homes, home health aides, or hospice care) more often than men, and also see doctors directly as outpatients less often.Women also had greater PD-related disability than men, including depression, hip fracture, osteoporosis, and rheumatoid/osteoarthritis.

References

1. Nwabuobi L, Barbosa W, Sweeney M, et al. Sex-related differences in homebound advanced Parkinson’s disease patients [published online July 31, 2019]. Clin Interv Aging. doi: 10.2147/CIA.S203690.

2. Fullard ME, Thibault DP, Todaro V, et al. Sex disparities in health and health care utilization after Parkinson diagnosis: Rethinking PD associated disability. Parkinsonism Relat Disord. 2018;48(3):45-50. doi: 10.1016/j.parkreldis.2017.12.012. 

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