New Alzheimer’s Association Recommendations for Alzheimer’s Care and Support

The Alzheimer’s Association National Plan Care and Support Milestone Workgroup has recently developed recommended milestones for patient and caregiver support and outlined achievement strategies. The report was published in Alzheimer’s & Dementia (2016;12[3]:334-369).

The National Alzheimer’s Project Act (NAPA) was signed into law in 2011. Over the past 5 years, milestones have been identified to meet the plan’s biomedical research goals. However, similar milestones have not been created for the goals on patient care and caregiver support.

“The Alzheimer’s Association’s National Plan Care and Support Milestones Workgroup has created the first-ever, single, comprehensive listing of all the public policies needed to create an ideal care and support system for people with Alzheimer’s and their families,” said Matthew Baumgart, senior director of public policy for the Alzheimer’s Association, who served as the lead staff member for the workgroup. “It is crucial that while we invest in more research to find preventions and treatments, we do not forget those who are living with the disease. These care and support milestones should serve as a call to action to all levels of government.”

By 2050, as many as 16 million Americans will have Alzheimer’s disease. Unless preventive therapies or actual treatments are developed in the coming decades, total costs of care could reach an estimated $1.1 trillion in 2050. The workgroup notes that perhaps even more daunting than the costs of care is the burden on individuals and families.

Strategies for attainment of patient care milestones include building a workforce with the skills to provide high-quality care, ensuring timely and accurate diagnosis, educating and supporting people with Alzheimer’s disease and their families upon diagnosis, and identifying high-quality dementia care guidelines and measures across care settings.

Among the strategies for attainment of caregiver support milestones are ensuring receipt of culturally sensitive education, training, support materials; enabling family caregivers to continue to provide care while maintaining their own health and well-being; assisting families in planning for future care needs; maintaining the dignity and rights of people with Alzheimer’s disease; and addressing the housing needs of people with Alzheimer’s disease.

In addition, the Workgroup strategies include equipping and requiring clinicians to disclose cognitive status to people with clinically consequential cognitive impairment, building upon existing efforts to reduce inappropriate use of antipsychotics and enhance care coordination.

To develop these strategies and milestones, the workgroup identified best practices in the care of individuals with Alzheimer’s disease and the support of unpaid caregivers. The experts also studied published state Alzheimer’s disease plans and dementia plans from other countries. —Amanda Del Signore