Publications

Dementia-Capable North Carolina: A Strategic Plan for Addressing Alzheimer's Disease and Related Dementias (2016)

Abstract

Dementia is a set of symptoms caused by underlying brain malfunction that typically includes memory loss, language difficulty, and impaired judgment. Alzheimer’s disease is the most common (and arguably the most well-known) of several brain disorders that cause dementia. Through a mandate from the North Carolina General Assembly, the Task Force on Alzheimer's Disease and Related Dementias was charged with developing an actionable strategic plan for the state of North Carolina that would address 16 topics as they related to Alzheimer’s disease and related dementias. The Task Force recommendations aim to improve statewide awareness and education about Alzheimer’s disease and related dementias; support people with dementia and their families; improve and enhance services that support greater quality of life; reach underserved populations; and improve data collection and research around treatment and prevention of Alzheimer’s disease and related dementias.

Full Description

Alzheimer’s disease, the most common form of dementia, affects one in seven North Carolinians over the age of 65. In North Carolina, over 160,000 people are living with Alzheimer’s disease, a number projected to increase to more than 210,000 by 2025. Because Alzheimer’s disease is underdiagnosed, up to half of the estimated number of people with Alzheimer’s may not know they have it. Dementia is a set of symptoms caused by underlying brain malfunction that typically includes memory loss, language difficulty, and impaired judgment. Alzheimer’s disease is the most common (and arguably the most well-known) of several brain disorders that cause dementia.

Alzheimer’s disease is a terminal illness, the fifth leading cause of death on North Carolina, and the only top 10 cause of death that cannot be cured, prevented, or slowed. Age is the primary known risk factor for dementia. The rates of Alzheimer’s disease and related dementias increase as people get older. Genetic predisposition, or family history, is another significant risk factor for developing Alzheimer’s disease or related dementia. Other potential risk factors may be modifiable through behavior and lifestyle changes including physical activity, educational attainment, occupation, diabetes, cardiovascular disease, hypertension, obesity, depression, and social and cognitive engagement, among others.

Alzheimer’s disease and related dementias have a significant impact on affected families. The Alzheimer’s Association estimates that 448,000 North Carolinians provided $6.2 billion in unpaid care for loved ones with dementia in 2014.

The Task Force on Alzheimer’s Disease and Related Dementias

In March 2015, the North Carolina Institute of Medicine (NCIOM), in partnership with the North Carolina Department of Health and Human Services Division of Aging and Adult Services, AARP North Carolina, Alzheimer’s North Carolina, the Alzheimer’s Association, the Duke Endowment, the Winston-Salem Foundation, and LeadingAge North Carolina, convened a statewide, multi-stakeholder Task Force on Alzheimer’s Disease and Related Dementias. Through a mandate from the North Carolina General Assembly, the Task Force was charged with developing an actionable strategic plan for the state of North Carolina that would address 16 topics as they related to Alzheimer’s disease and related dementias.

The Task Force recommendations aim to improve statewide awareness and education about Alzheimer’s disease and related dementias; support people with dementia and their families; improve and enhance services that support greater quality of life; reach underserved populations; and improve data collection and research around treatment and prevention of Alzheimer’s disease and related dementias.

The Task Force was chaired by Goldie S. Byrd, PhD, Dean, College of Arts and Sciences, North Carolina A&T State University; Doug Dickerson, MBA, State Director, AARP NC; and Lisa Gwyther, MSW, CSW, Associate Professor, Department of Psychiatry and Behavioral Sciences, Center for the Study of Aging and Human Development, Duke University Medical Center. The Task Force was supported by a multidisciplinary Steering Committee comprised of senior program level staff from the North Carolina Department of Health and Human Services Division of Aging and Adult Services, LeadingAge, University of North Carolina, Monarch, the North Carolina Coalition on Aging, Alzheimer’s NC, and the Alzheimer’s Association (Western North Carolina Chapter). The Steering Committee met on a monthly basis between scheduled Task Force meetings and contributed expert content to the planning of Task Force meetings, clarified issues of relevance for the Task Force, and identified speakers to present expert research at Task Force meetings.

The Task Force met 10 times throughout 2015-2016, and developed an actionable, goal-oriented state plan which addresses the topics described by the General Assembly. The state plan provides policymakers, funders, and stakeholder organizations with a common vision and action steps to address Alzheimer’s disease and related dementias and their effect on our state.