Lynn Feinberg

Imagine living with someone you are crazy about who gradually turns into a stranger. Alzheimer’s disease is a heartbreaking disease, not just because it takes a loved one in death, but because first, it takes that person’s mind, personality, memory and character – the things that made us love them in the first place.

Today, more than 5 million Americans suffer from Alzheimer’s disease, and that number is expected to grow to over 13 million by 2050, according to the Alzheimer’s Association. In most of these cases spouses, adult children and other family members take on the burden of treatment decisions and care coordination, while also helping their loved one maximize their quality of life and live in dignity and comfort. Although this terrible disease is devastating to all Americans, it is women – our mothers, grandmothers, great-grandmothers, aunts, sisters – who are most affected not only by having the disease itself, but also by being the primary caregivers of persons with Alzheimer’s disease and other chronic conditions in the U.S.

A recent report released by Maria Shriver and the Alzheimer’s Association, The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, explores the issues around caring for a family member or friend with Alzheimer’s. The report outlines the struggle women, in particular, face as they balance their responsibilities in the workplace while also caring for a parent or grandparent with the disease. According to the report, the average unpaid Alzheimer’s caregivers are working women over the age of 50 providing care most frequently to their mothers (31%) and spouses (15%).

From the Campaign for Better Care’s national opinion research, we know they are taking on these responsibilities in a health care system that is fragmented and uncoordinated, making the weight of their caregiving responsibilities much heavier. In a country like ours, it just isn’t right that people with Alzheimer’s disease and other chronic conditions don’t get the high quality, coordinated care they deserve.

Today, doctors lack the time to develop a relationship with the patient and his/her family – or coordinate with their other doctors, health and social service providers, and community supports. I envision a day when our health care system provides incentives for primary care doctors to routinely hold a family meeting with Alzheimer’s families in order to have a focused conversation about their values and preferences and plan their care, rather than just paying for more procedures and treatments. We need a health care system that promotes more effective communication among health care providers, patients and their families; strengthens continuity of care; and is organized to deliver team-based care that includes direct care workers (like home care aides) who are vital to the well-being of Alzheimer’s families – and every family that is caring for a loved one who is suffering.

This is what the Campaign for Better Care is all about. We know that chronic conditions like Alzheimer’s disease affect not only patients, but their families too. We know that we must make our voices heard to make improvements in the health care system so that it delivers high quality, comprehensive, and coordinated care, especially for vulnerable older adults with multiple chronic conditions. Now is the time to act.

In November, as we celebrate both National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, let us transform the national conversation and make meaningful change for our families and for ourselves.

Read about one family’s experience with Alzheimer’s disease here.

Lynn Feinberg

My two sisters and I are a team.  For several years, as we each juggled our own work and family responsibilities, we willingly took on the role of “advocate” and “coordinator” of health care across settings (home, hospital, nursing home) for my father, who died last year at the age of 94.  It wasn’t easy.  At times it sapped our energy and our spirits.  But we took on the role out of love and a deep respect for our father.

Now we are teaming up again for my mom.  We have to – because none of our parents’ health care providers have taken on the critical role of coordinating care, communicating with each other, or linking us to the community supports that older adults need to maintain their independence, functional status, and quality of life. Older adults with multiple health problems, in particular, need doctors, nurses and other health providers who talk to each other and work together – along with the patient and their family caregivers – as a team. That’s the better way, but it’s out of reach for too many patients and families.

That’s why I hope you will get involved in our major new initiative, the Campaign for Better Care. The Campaign’s policy agenda aims to ensure that the reformed health care system provides the comprehensive and coordinated care that older adults with multiple health problems need and deserve.  It will advocate at the federal and state levels to ensure that new models of delivering care are patient- and family-centered, team-based, and include important services like geriatric assessment, care planning, comprehensive care coordination, transition management between care settings, medication management, and community support for older adults and their family caregivers.  It will promote payment strategies that support primary care practice and reward better quality, coordination and communication among health providers, patients and family caregivers.

May is Older Americans Month – a tradition dating back to 1963 that honors the legacies and ongoing contributions of older Americans. When Older Americans Month was established 47 years ago, only 17 million living Americans had reached their 65th birthdays.  Today, there are nearly 40 million adults age 65 and older.  And with the aging of the baby boom generation – the largest in our history – the U.S. older population is expected to grow to 71.5 million by 2030.  In fact, the first baby boomers turn age 65 in 2011 and they will become eligible for Medicare. Will the health care policies of the future meet our needs more adequately than the policies affecting older Americans today?

If the Campaign for Better Care is successful, the answer will be yes!  So during this Older Americans Month, let us all honor elders – our fathers, our mothers, our grandparents, great-grandparents, and other older relatives and friends. And let’s celebrate and support the launch of the Campaign for Better Care and work together to improve health care for older Americans and their families.

Lynn Feinberg

Everyone I know has at least one personal story about the overwhelming stress and frustration in trying to arrange, coordinate or provide the best possible care for an aging parent, spouse, grandparent, other older relative or friend, not to mention the spiraling costs of health care.

More than three decades of research clearly show that family caregiving is a public health issue — that family members who provide care to older adults with chronic or disabling health conditions are themselves at risk — emotionally, physically and financially — particularly when the care is for a loved one with Alzheimer’s disease or another form of dementia.

Given our current economic recession, the financial aspects of family caregiving can be particularly distressing for the estimated 34 million Americans — most of whom are women — who provide care for an older (50+) family member or friend. The financial strain on this group, as they try to manage work, family, and caregiving responsibilities, was highlighted in a recent article in the New York Times. “Taking Care of Parents Also Means Taking Care of Finances” describes the growing numbers of Americans who are facing the “financial squeeze that can come from caring for elderly parents.”

The costs can be significant. Caregivers to persons age 50 and older spent an average of $5,531 per year out-of-pocket in 2007 for expenses ranging from household goods, food and meals, travel and transportation costs, to medical care co-pays and prescription medications.

According to a recent study by the National Alliance for Caregiving and Evercare, family caregivers have experienced the economic downturn in major ways. Consider these sobering statistics:

• 50% of working caregivers (that is, those who have worked at some point while providing care in the past 12 months) said they were less comfortable taking time off from work to provide care;
• One in three working caregivers said they had to work more hours or get another job;
• One in six (15%) said that the economic downturn has caused them to lose their job or be laid off;
• Six out of 10 caregivers who reported increasing their out-of-pocket spending for caregiving also reported having difficulty paying for their own basic care needs; and
• 63% say they are saving less for their own retirement.

When it happens to you, when it becomes a personal issue in your own family, you are more likely to act.

For years at the National Partnership, we have talked about helping Americans meet the dual demands of work and family. A lot of people think about working parents when they hear those words, but millions of working people in this country are caring for frail, older relatives. The time has come to organize family caregivers as a strong and powerful force for meaningful and lasting change.

Stories about the real-life experiences of older adults and their family caregivers can help increase attention to the urgent need for better and more affordable, coordinated care.

Please take a moment to share your personal story about your caregiving experiences for an aging relative or friend.

Your story can make a difference!