The Price Women Pay for Dementia

Dementia is among the most onerous gender-based health disparities in the United States, inflicting a disproportionate burden on women as both patients and caregivers. Of the 6.4 million Americans with dementia, most of whom are undiagnosed, women account for 4.2 million of them--or two-thirds of the patient population.

This has been attributed to the fact that women live longer than men and have higher incidences of chronic diseases that increase the risk of developing dementia; however, recent research suggests there may be biological pathways that lead to greater cognitive impairment in females. ( Women also make up the majority of informal caregivers, often as family members of dementia patients who need around-the-clock assistance with the most basic needs.

Historical Effects: Social and Economic
The overall economic burden of dementia on women in 2012 was $91.1 billion, or a staggering 76 percent of the total economic burden in the U.S. In 2012, only 628,800 females with dementia were estimated to be in the workforce. The majority of patients are over 65 and not employed, resulting in a modest effect on the labor force. On the other hand, the missed workdays (absenteeism) and/or diminished productivity (presenteeism) of the informal female caregivers is many times greater. Of the total 5.8 million women caregivers in 2012, 60 percent were employed. The combined indirect effect of absenteeism and presenteeism of female caregivers and patients was $43.7 billion that year. Adult day-care services and nursing home costs accounts for the balance.

Projections: Treatment and Cost Burden
By 2040, under a current trajectory projection with a rapidly aging population, the number of women afflicted with dementia would more than double, rising to 8.3 million. Women engaged as informal caregivers jump to 11.2 million. Dementia-related health expenditures for women reach $24.7 billion, an increase of over 200 percent from today. Long-term care service costs for women vaults to $130.7 billion in 2040. The indirect labor market effects from women informal caregivers will result in a GDP loss of $118.6 billion. The combined figures for treatment, living arrangements, and indirect impacts increase the overall economic burden on women to $274 billion in 2040, three times the burden from 2012.

Here are five policy prescriptions for creating an alternative future:

Widen Access to Health Care
Improving access to primary care and home health is necessary. The current shortage of health-care professionals trained in geriatrics will only be exacerbated as dementia cases rise in the future. A wide range of medical professionals, including but not limited to doctors and nurses, must be trained. Incentivizing this process will require substantial financial resources and falls outside the traditional definition of health-care costs associated with a disease.

Expand Scope and Flow of Services
An expansion in the scope of health care is needed to provide improve coordination between long-term care services and other categories of social service organizations. As dementia patients' cognitive functions deteriorate, families providing informal care will require more use of long-term-care services to assist with activities of daily living. Increasing insurance coverage for long-term-care services such as nursing home and adult day-care services, as well as making long-term care insurance more affordable, could work to reduce the burden on informal caregivers and minimize labor market side effects.

Raise Dementia Awareness and Caregiver Training
Raising public awareness of the signs of dementia and better communicating the steps toward diagnosis could lead to earlier and more effective treatment. Earlier diagnosis could also provide opportunities for better caregiver training and reduce stress associated with informal caregiving, which could ameliorate absenteeism and presenteeism in the workplace by caregivers. In addition, greater public awareness could encourage employers to provide elder care in the workplace similar to child care, minimizing productivity loss.

Provide Support in the Workplace
As women's participation in the labor force has risen, the demands on women as caregivers at home have become even more stressful. Women have made progress towards gender parity in the workplace; many are the primary breadwinners of a household. An increase in the demand for long-term care services and home health services will likely result from rising prevalence. A small level of financial assistance from employers or government could allow informal caregivers to remain employed, especially if the dementia case is not yet severe.

Increase Funding for Alzheimer's and Dementia Research
More funding for both basic and translational research is essential. Better understanding of brain biological mechanisms would aid drug development and medical technologies keep-failing. The 2016 budget bill that Congress passed contained a $350-million increase in funding for dementia research at the NIH. This is a good down payment, but more must be done in funding basic research in the brain field.
Special status designation by the Food and Drug Administration would likely incentivize biomedical companies to invest more in developing drugs for the market, and reduce the time involved in developing dementia therapies. Adjusting intellectual property rules so that patents do not expire prior to clinical trials being completed would lessen the financial risk and attract more R&D funding in these therapeutic areas.

We need to alter the current course by delaying the average age of dementia onset, slow its progression and severity, and ultimately, find a cure. If we don't, the human and economic toll on women, their families, and society will be immense.

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