The National Alzheimer’s Project Act provides an historic opportunity to develop and act on a comprehensive approach to the detection of memory disorders and the management of Alzheimer’s disease. No one doubts the importance of developing prevention approaches, tools for early detection and effective therapies. And no one doubts the seriousness of Alzheimer’s disease as an affliction that hurts families, communities, the health care system and, ultimately, the productivity of our society. But the draft framework is somewhat vague even as it contains excellent goals and begins to focus the minds and resources of key stakeholders on these issues.
An examination of the strategies provided for each goal from the perspective of individuals at risk, people with memory changes who probably have pre-dementia stages of Alzheimer’s, and patients and their families highlights some of the framework’s current gaps and suggests modifications that could harmonize the plan’s goals and achieve its aims.
For starters, the idea of setting a timeline for the development of effective prevention and treatment for Alzheimer’s disease by 2025 — the framework’s first item — is a great goal. It would push the Department of Health and Human Services to prioritize and accelerate the pace of scientific research in order to develop effective prevention and treatment modalities by that year. However, although the timeline mentions the important step of translating the fruits of that research into practice, it does not pinpoint how or where that translation would take place.
The framework’s next comprehensive goal — that of enhancing care quality and efficiency — recognizes the need for properly educated, direct care workers as well as physicians and other health professionals. But the plan so far does not address how these workers would be motivated to obtain special education, or to take on the difficult care of Alzheimer’s patients or people at risk for this illness. All over the country, practitioners are opting out of Medicare and often out of insurance plans altogether. A network of geographically distributed memory disorders centers would go a long way to enhance care. But we would also have to reform the formulas that determine how care of patients with chronic and complex diseases, like Alzheimer’s, is reimbursed. A network of memory disorders centers would also provide hubs where the translation of research findings to actual treatment could take place.
The framework appears to be generally responsive to the needs of families in terms of its strategies to expand patient and family support — its third goal. But the framework has some critical gaps. For instance, although the plan mentions the need for help in crisis situations, it does so without an implicit acknowledgement that certain services, such as acute and chronic psychiatric care for Alzheimer’s patients who have behavioral and psychological symptoms of dementia, are disappearing in communities all over America. Reimbursement for acute and chronic psychiatric care in Medicare and Medicaid patient populations must be addressed as part of the strategy. So far, the framework also doesn’t address some of the biggest day-in, day-out problems that afflict those diagnosed with the disease, such as their need for transportation since it is standard practice for doctors to tell their patients not to drive.
Another specific part of the framework involves enhancing public awareness. Obviously, this concept — the fourth broad goal — is in everyone’s best interest. But going forward, the plan should include a strategy for training public sector workers, such as first responders, and providing tools to everyone who interacts with older patients to help them identify signs of cognitive impairment, and to prepare them to respond appropriately.
Finally, the fifth goal — improving data to track progress — is another worthwhile concept. But what the framework currently does not address is who within the federal government will be responsible for holding the various public- and private-sector agencies and offices accountable for keeping up with their part of what will ultimately be a national plan. The plan should recommend the appointment of a person who would report directly to the HHS secretary about the coordination of these activities.
The signing of the National Alzheimer’s Project Act has opened a channel of hope that, for the first time, could lead to comprehensive reform. It is critical that the needs and perspectives of patients, their families, and the providers who also help to take care of them serve as the chief unifying theme across the framework of goals.
Dr. Rachelle S. Doody, the Effie Marie Cain Chair in Alzheimer’s disease research at the Baylor College of Medicine, directs the Alzheimer’s Disease and Memory Disorders Center.
This article was produced by Kaiser Health News with support from The SCAN Foundation.