Dementia

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.

Driving Progress in 2017

In the United States, a change of administration always brings uncertainty. With new leaders entering Congress and the White House, we at WA2 know we can turn that uncertainty into opportunity. Opportunity because we know finding a cure for Alzheimer’s and alleviating its burden on families can bring us together. WA2 is committed to continuing to lead a campaign to promote women’s brain health and fight against Alzheimer’s. 2017 is a critical year in our battle to stop Alzheimer’s in its tracks by 2020. 

We are confident in the progress we will make because we know that our passionate partners and advocates can change individual lives and communities, intensify medical and private-sector responses, and shape the national policy landscape. Alzheimer’s is one of the few issues that cuts across party lines, affecting women and caregivers of all ages, races, creeds, and political beliefs. This widespread impact creates a shared basis for sustained action by women leaders across America, from caregivers and community advocates to legislators and executive leaders. This is the central strength of our movement.

To guide WA2 and our supporters, we would like to highlight the pillars of a concerted, nationwide effort to combat Alzheimer’s in the year ahead. This is an overall summary – we will explore each of these in greater depth throughout the year. If we dedicate ourselves to achieving these goals, and encourage others to join us, then 2017 will be a time of advocacy, awareness, and progress towards our goal of ending Alzheimer’s by 2020.

First, we must create a groundswell of awareness for brain health and risk reduction strategies. Through one-on-one conversations, community-based outreach, and national campaigns, we can inform women of all ages about the importance of protecting their brain, beginning early and continuing throughout their lives. This will encourage women to make beneficial lifestyle changes and adopt strategies to reduce their overall risk of Alzheimer’s.

At the same time, we must work with the medical community to create a system-wide framework to promote brain health. We must educate physicians about the need for a regular “check-up from the neck up,” and make this a common practice in doctor’s offices across the US. With this practice in place, more patients will become aware of the medical need for brain health, and more physicians will be able to identify and address the early signs of cognitive impairment. Additionally, this will increase participation in the critical clinical research that will help find a cure. 

We must also join together to transform every American community into a base of support for those with Alzheimer’s and their families. Our January Campaign partner, Dementia Friendly America, is driving progress in this area by working with supporters to create communities that are informed, safe, and respectful for those affected by Alzheimer’s and their care partners. By providing engagement, tools, and action plans, we can build a network of communities that address Alzheimer’s locally, and expand that network to reach every person in the US affected by this disease.

In addition, we must open and drive national conversations about the disparate impact of Alzheimer’s on women. Women are twice as likely both to die from this disease and become Alzheimer’s caregivers. Further, women lose hundreds of millions of dollars every year as a result of the disease. These disparities are unacceptable. We must focus private and public discussions on these burdens, and call for immediate solutions – solutions that include an increase in sex-based research and changes in policies that help women meet the demands of care while maintaining their careers. If successful, this advocacy will also raise rates of diagnosis, increase women’s participation in medical research, and alleviate the current burdens of the disease on patients and their caregivers.

Finally, we must spark progress at the federal level, and channel that progress into key policy changes. January marks a new year, a new Congress, and a new President, which create opportunities to shift dialogues and move Alzheimer’s to the top of Washington’s agenda. Through advocacy and engagement, we can inform law-makers and push for specific improvements, including increases in research funding, particularly for sex-based studies, enhanced support for affected individuals, and improved access to diagnosis and care.

If we commit to taking these actions, we will achieve widespread advances. Women across America must unite to promote brain health, reshape communities and the medical system, and amplify the reach of local, state, and federal advocacy. We must insist on an urgent national response that reflects the disease’s uneven and unjust impact on women. Together, we can build on our current momentum and ensure that 2017 is the year when we stepped closer to the end of Alzheimer’s. 

Tough Conversations

Around the country, families are gathering for holiday celebrations, visiting loved ones, and discussing their plans for the coming year. Yet too often, families miss this opportunity to have the important – but difficult – conversations about older relatives’ wishes for their end-of-life care.

If an older family member develops a serious illness that impairs their decision-making capacity, loved ones will often face a host of challenging caregiving, medical, financial, and legal decisions. Establishing a relative’s wishes ahead of time, through frank and intimate discussions, provides vital guidance to navigate these issues. This not only ensures that caregiving and medical care match an individual’s values, but also helps adult children and others to avoid feelings of guilt, confusion, or anxiety, which often arise when they must make these choices unaided.

However, families frequently avoid talking about this subject, which can be uncomfortable and difficult to raise. In fact, though 90% of Americans say that talking with their loved ones about end-of-life care is important, only 27% have done so. Family members sometimes postpone conversations until a health problem arises, but that may already be too late for the affected individual to communicate – especially if Alzheimer’s or dementia affects their cognition.

However, there are ample resources and proven strategies to help adult children begin these conversations with their parents and other older adults. The Conversation Project provides a Conversation Starter Kit to steer the discussion, as well as a kit specifically for Alzheimer’s and dementia. These include questions to ask older relatives, potential conversation starters, and a list of important issues to address. AARP also offers useful tips for starting to talk about advanced care planning and end-of-life preferences.

Re-uniting with family for the holidays is an ideal time to broach this topic, and can also serve as the first warning of a decline in health, especially if relatives have not been in regular, close contact with an older adult. Though the details of these discussions will vary, there are a few general principles to keep in mind:

  • Plan ahead. Bringing up end-of-life choices can be daunting, but preparation helps to ensure both that you follow through and that you cover all the areas that are most important to you. Ahead of time, consider who you want to talk to, when would be best to talk, where would be most comfortable, and the topics you would like to discuss first. You can also plan your “opening lines” beforehand, or even bring written materials, if you feel they are appropriate for the situation.
  • Address key questions. Ideally, these conversations will provide practical takeaways for a range of issues, and could even result in detailed plans. However, even if you don’t reach this level of depth, it’s important to get answers for key questions related to medical care, end-of-life choices, and legal and financial matters. For example, do older relatives have any existing concerns about their health? Have they noticed recent changes in memory or thinking? Who should be involved in caregiving and end-of-life decisions? If the situation arises, do they want the full extent of medical intervention possible, or would they prefer more limited comfort care? Where would they like this phase of life to occur?
  • Have multiple conversations. A single talk cannot cover all the topics necessary for a complete understanding of end-of-life values and wishes. Older relatives will likely need to reflect on these important questions, alone or with others, before reaching a conclusion. Expect to have multiple conversations, and don’t create unnecessary pressure by attempting to address every possible scenario in a single discussion. Once you bring up the topic for the first time, later conversations will likely be easier and more focused.

Honest, two-way communication is the best way to prepare a family for the tough decisions that accompany an older relative’s end-of-life care. By establishing a shared understanding about this phase of life, families can ensure that a loved ones’ wishes are respected, while also reducing the stress and emotional strain of this period for other relatives. The weeks ahead offer an excellent opportunity to take a first – or fifth – step towards this reassuring,