I am into my third decade of being an elder care law attorney. Early on in my career, I realized the shortcomings of a traditional elder law practice focused exclusively on financial issues. Our clients and families needed a multi-disciplinary approach to aging and chronic care issues, which focused on helping families navigate the health care system. This is the reason we now have five geriatric social workers in our elder care law firm.
In 1989, Dr. Margaret Noel, a geriatrician, founded the Center for Older Adults at Thoms Rehabilitation Hospital in Asheville, North Carolina. Her center saw older adults whose multiple illnesses were a complex web of social, medical and financial problems, and involved significant communication with both the patient and family members. Most of the patients came to the center with dementia-related issues. The problem with this type of medical practice was the business model. Rather than have funding come from research and philanthropy, the funding came through patient care billing. According to the hospital, this business model was not financially sustainable. As a result, the center was forced to close in 1999.
However, Dr. Noel did not give up. She was committed to continuing the model of comprehensive interviews with patients and family members, time spent with a social worker to create a comprehensive care plan, and follow-up to help implement the plan. As a result, she founded MemoryCare. Over twenty years later, MemoryCare has six physicians, three social workers and a nurse, working in teams, including conducting home visits.
The story of Dr. Noel is retold in a fascinating new book, The Problem of Alzheimer’s – How Science, Culture, And Politics Turned a Rare Disease Into A Crisis And What We Can Do About It, by Dr. Jason Karlawish. Dr. Karlawish is a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania and the co-director of the Penn Memory Center. He has spent much of the last 20 years working with persons with Alzheimer’s, including being a part of cutting-edge clinical trials on diagnosis and treatment of Alzheimer’s.
Dr. Noel’s success in transforming her center to a multidisciplinary operation is the exception rather than the rule. According to Dr. Karlawish, “we are bound up in a health care system that cannot (or will not) care for persons with Alzheimer’s Disease.” Unlike other developed nations, the United States is the only country which does not guarantee universal long-term care coverage for its citizens.
Dr. Karlawish believes if we are to encourage more clinicians to structure their medical practice like Dr. Noel, greater reimbursement will be needed, such as those created under the 2010 Affordable Care Act. However, more money alone is not enough for this transformation. Our health care system must provide compassionate diagnosis and care options for the person living with dementia and their family members. While research continues, we must foster quality of care and quality of life for persons with dementia and their caregivers.
Like medicine, the law has its shortcomings when attempting to provide holistic options for persons with dementia and their caregivers. The law alone will not, in isolation, be successful in solving the problems of dealing with Alzheimer’s and related dementia and meeting an individual’s needs. A comprehensive approach to elder care law is needed to help families navigate the long-term care system they have been thrust into. According to Dr. Karlawish, “our duty – caregivers, the health care system, government, society – is to be present from diagnosis to death.” I could not agree more.
