Women's Issues

Transforming the System: Spreading Costs Equally

The backwards march on economic gains for women has begun and Alzheimer’s disease bears more of the blame than one would think. For millions of American women who live with the disease or find themselves in the role of caregiver, Alzheimer’s drains savings built over a lifetime, results in career sacrifices, and depletes finances.

Alzheimer’s causes staggering economic disparities, with women bearing 80 percent of the disease’s social cost. Fighting these disparities is the May theme of the We Won’t Wait Campaign, and the topic of an event we co-hosted with AARP on May 8: “Voices of Action: Addressing the Economic Disparities of Dementia for Women.”

The “Voices of Action” event explored a set of compelling new studies on the topic, like the Milken Institute’s report “The Price Women Pay for Dementia,” which finds that more than three-quarters of the US costs of Alzheimer’s are borne by women. This translates to $91 billion in treatment expenditures, indirect impacts, and altered living arrangements. And this total is only going to increase. It’s estimated that the impact of Alzheimer’s on women will cost the US economy $5.1 trillion through 2040.

But these disparities are not inevitable; they are the result of our existing social support, medical, and workplace systems. We must transform these systems to spread the costs of Alzheimer’s in a more equal way. There are three core causes – and each can be solved:

 

Women pay for gaps in support.

  • Challenge: Our current support systems do not always adequately provide for those with Alzheimer’s, which leaves unpaid family caregivers to bear the burden. Women account for more than 2/3 of these caregivers, who provided roughly $230 billion in unpaid care in 2016. Alzheimer’s caregivers also spend an average of $5,155 out-of-pocket on care annually, compounding losses to income and savings.
  • Potential Solutions: In addition to dealing with the many challenges of giving care, caregivers are often faced with unanticipated challenges related to their own physical and mental health and economic well-being. We must advocate for our caregivers – focusing our attention on ensuring that they receive proper training and adequate support. Providing better caregiver training would alleviate the burden on family caregivers and lead to better outcomes for patients as well..

 

Women pay for medical treatment and healthcare.

  • Challenge: In the US, total Alzheimer’s treatment expenditures for women are nearly three times greater than those for men, and in each individual case of Alzheimer’s, the direct treatment costs are $3,000 higher for women. At the same time, funding for sex-based medical research remains limited, which slows progress towards therapeutic breakthroughs.
  • Potential Solutions: Developing effective preventions, treatments, and ultimately, a cure for Alzheimer’s will require far greater funding from both private and public sources, with a particular focus on sex-based research. Ultimately, we will also need public and private stakeholders in the Alzheimer’s space to ensure that eventual treatments will be accessible to as many patients as possible.

 

Women pay for the workplace and professional impacts of Alzheimer’s.

  • Challenge: 60 percent more women Alzheimer’s caregivers leave their jobs than men, and this decision can cost more than $300,000 in lost wages and Social Security benefits. Overall, the impact of Alzheimer’s care on women employees results in almost $30 billion in lost GDP annually – 80 percent due to absenteeism and presenteeism.
  • Potential Solutions: Businesses and policymakers should adopt policies that support employee caregivers, including telecommuting, flex time, and other arrangements that allow for caregiving, including paid time off. Many of these policies will also reduce productivity losses, increase employee loyalty and benefit companies’ bottom-lines. Policy changes should also be coupled with awareness and educational campaigns to create workplaces and work cultures that are more accepting and accommodating of family caregivers.
     

We Won’t Wait to challenge the skyrocketing costs of Alzheimer’s disease and their impacts on women. Through channels like the Voices of Action event this month, or WA2 President Jill Lesser’s testimony to Congress, we are overturning business-as-usual approaches and insisting on new, less expensive, and more equitable solutions for Alzheimer’s.

Guest Blog: Lisa Winstel, COO, Caregiver Action Network

November is National Family Caregivers Month: a time to rally in support of the 90 million Americans who provide care to loved ones, especially those facing the complex and exhausting challenges of Alzheimer’s.

Caregiver Action Network, a We Won’t Wait campaign partner, is spearheading National Family Caregivers Month with activities and outreach around the theme, “Take Care to Give Care.” This addresses a central dilemma for caregivers: providing care strains their own health, finances, and mental well-being. In response, Caregiver Action Network’s awareness effort encourages all caregivers to prioritize their personal well-being and calls on communities to share the care burden.

In this year’s Presidential Proclamation, President Obama echoes this message, saying that “our Nation was founded on the fundamental ideal that we all do better when we look out for one another...During National Family Caregivers Month, we reaffirm our support for those who give of themselves to be there for their family, friends, and neighbors in challenging times.”

Caregiving’s physical, emotional, and financial toll is especially severe for Alzheimer’s. These caregivers – two-thirds of whom are women – struggle with increased medical costs, disrupted careers, and compromised brain health. Responsibilities and costs mount as the disease progresses, often requiring around-the-clock care for a decade or more.

Fortunately, there are a range of proven strategies for a healthy caregiving balance. To manage the burden, caregivers can communicate with their support network, prioritize certain tasks, and delegate when possible. The essentials of wellness, such as nutrition, exercise, and rest, are doubly important for caregivers; they enable high-quality, sustained care, while mitigating health impacts. And for the unique behavioral and emotional changes that comes with Alzheimer’s, certain approaches can ease daily frustrations for both the caregiver and the person with Alzheimer’s.

Caregiver Action Network has published a useful set of tips, facts, and considerations for caregivers. Available here, they are:

·      Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities – from managing medications to arranging doctor appointments to planning meals – caregivers too often put themselves last.

·      The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, family caregivers have a disproportionate number of health and emotional problems. They are twice as likely to suffer depression and are at increased risk for many other chronic conditions.

·      Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to help maintain your strength, energy and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take care of yourself and keep a positive attitude overall.

·      Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization – which may help make your care of a loved one easier.

·      Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather, the opportunity to re-energize, is vital in order for you to be as good a caregiver tomorrow as you were today.

These keys can power women and families during the Alzheimer’s journey. Please keep them in mind and share with your network, whether you are a caregiver yourself or know affected individuals. These tools are critical for maximizing the quality of Alzheimer’s care, while minimizing the impact on caregivers’ health and opportunities.