by Molly Fogel, LCSW
Director of Educational and Social Services, Alzheimer’s Foundation of America
More than 5 million individuals in the U.S. are living with dementia. Family members and friends provide an estimated 17.4 billion hours of unpaid care. The average annual cost of care (direct and informal – informal refers to care provided by family and friends) for people aged 70+ in the U.S. in 2010 was between $157-$210 billion. Figures, such as these, are cited in countless policy reports, research studies, and media stories; however, they are more than just numbers. In the face of such an epidemic, resources at many acute, residential, and community-based care settings around the country are spread thin. As health care professionals, we are often required to do more with less support. Managing an increasing workload requires us to be efficient, following agendas enforced by institutional protocols. It’s no surprise, then, that frustrations arise when our routines are disrupted. In such situations, it can be easy to place blame on the “difficult” individuals with dementia to whom we provide care who are exhibiting behaviors that we perceive to be “problematic.”
In the pursuit of becoming true partners in care, it is imperative that we put aside our biases and assumptions about the individuals with dementia with whom we work. We need to challenge the dominant discourse in health and dementia care that labels behaviors of individuals with dementia as “problematic” and in need of “management.” We must remind ourselves that, first and foremost, individuals with dementia should not be defined by the condition; they are people with unique wishes, needs, and desires – the same as you and me. Since they happen to have a condition that commonly impairs their ability to effectively express themselves, it is our job to be detectives—to slow down and take time to try to understand what it is individuals are trying to communicate—by paying attention to verbal and non-verbal cues. Check in with yourself—what message and tone are you communicating with your body language? Utilizing empathetic communication strategies will not only increase the likelihood that messages will be effectively communicated and interpreted by both parties, but will also enable you to develop rapport with the individuals for whom you provide care.
At the Alzheimer’s Foundation of America (AFA), we are dedicated to supporting dementia care partners develop and strengthen their communication skills to work effectively with this population. We offer a variety of educational resources, including our newest self-study training and certification program, AFA Partners in Care: Supporting Individuals Living with Dementia, which, among other topics, explores how to interpret behaviors and provides best practice strategies for positive communication. We are here to assist you in your professional development and encourage you to reach out for more information and support.
The Alzheimer’s Foundation of America is a non-profit founded by a consortium of organizations to fill the gap that existed on a national level assuring quality of care and excellence in service to individuals with Alzheimer’s disease and related illnesses, and to their caregivers and families. AFA unites more than 2,400 member organizations from coast-to-coast that are dedicated to meeting the educational, social, emotional and practical needs of individuals with Alzheimer’s disease and their families. Under AFA’s umbrella, these organizations collaborate on education, resources, best practices and advocacy —all resulting in better care for people affected by the disease. AFA’s services include a national, toll-free helpline staffed by licensed social workers, educational materials, professional training, community outreach, free quarterly caregiver magazine, research funding, public advocacy and programmatic services. For more information about AFA, call 866-232-8484, visit www.alzfdn.org, follow us on Twitter or connect with us on Facebook or LinkedIn.
 Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J., & Langa, K. M. (2013). Monetary costs of dementia in the United States. New England Journal of Medicine, 368(14), 1326–1334. http://doi.org/10.1056/NEJMsa1204629