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.