Alzheimer’s Disease and Related Dementias Information and Resources

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In 2020, there were an estimated 300,000 North Carolinians living with Alzheimer’s Disease or a related dementia and an additional 356,000 caregivers were also affected by it. From 1999 to 2019, the number of Alzheimer’s deaths in the state increased 145% while deaths from heart disease increased only 5% during that same period. The number of people in NC living with dementia is expected to increase to 400,000 by 2025 and there will likely be a shortage of available health care workers to care for them. The number of doctors specializing in the care of older adults will need to increase 239% by 2050 in order to meet the anticipated demand.

There is a bit of good news on the horizon, however. Until recently, dementia was considered an incurable and unpreventable disease recent studies have shown that some simple and low-cost measures, many of which have been found to be protective against other diseases and good for overall health, can also reduce the risk of developing dementia. These measures include a healthy diet, regular exercise, social connectedness, smoking cessation, maintaining normal blood pressure and blood sugar levels and treating diagnosed depression or hearing loss (hearing aids).

In September 2020, the North Carolina Division of Aging and Adult Services was awarded $960,000 in funding (over three years) from the BOLD Infrastructure for Alzheimer’s Act. Having already completed an update to its dementia strategic plan, North Carolina is now poised to begin implementation of the recommendations in the plan in order to build public health infrastructure statewide and focus on risk reduction through the measures listed above, increasing early detection and diagnosis, prevention of avoidable hospitalizations, and supporting dementia caregiving.

Sources:

BOLD: https://www.cdc.gov/aging/bold/index.html

NC deaths from Alzheimer’s and heart disease: https://schs.dph.ncdhhs.gov/data/vital.cfm

Dementia Capable Coalition of NC 2016 report: https://nciom.org/task-force-on-alzheimers-disease-and-related-dementia/

Alzheimer’s Association North Carolina Statistics https://drive.google.com/file/d/1fdmlBr4oEQzK3a3dxRmjKbtOwM8LkgZ3/view

In 2014 the NC General Assembly mandated a statewide Task Force on Alzheimer’s disease, led by the NC Institute of Medicine (NCIOM). The Task Force formed the Coalition for a Dementia-Capable NC who developed the Dementia-Capable NC Strategic Plan for Addressing Alzheimer’s Disease and Related Dementias (ADRDs). The strategic plan recommendations aim to improve statewide awareness and education about ADRDs, 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 ADRDs. The Coalition for a Dementia-Capable NC was established in 2016 and meets quarterly to oversee progress and implementation of recommendations contained in the state strategic plan.

2016 Dementia-Capable NC: A Strategic Plan for Addressing Alzheimer's Disease and Related Dementias 

2020 Dementia Capable Progress Report

2022 Update: Dementia-Capable NC: A Strategic Plan for Addressing Alzheimer's Disease and Related Dementias

The NC Association of Area Agencies on Aging (nc4a) in partnership with the NC Division of Aging and Adult Services is helping to train Dementia Friends Champions across the state to provide free training that changes the way people think, act, and talk about dementia. Dementia Friends is an information session, not a training. It differs from Dementia Friendly Communities & Hospitals because it is not intended to be used as a complete dementia friendly business, dementia friendly hospital, or direct care worker training for individuals who provide care to people with dementia.

Learn more about Dementia Friends at the Dementia Friends USA website below.  Contact your local Area Agency on Aging at the website below if you would like more information about training opportunities to become a Dementia Friend.

Website (Dementia Friends): https://dementiafriendsusa.org/

Website (NC Area Agencies on Aging): https://www.nc4a.org/membership

Communities across North Carolina are embracing the Dementia Friendly movement. According to Dementia Friendly America (DFA), a Dementia Friendly Community is a village, town, city, or county taking action to ensure people with dementia can live independently for as long as possible. It is a community where people with dementia and their caregivers will be able to engage in a variety of activities and be supported in these activities. https://www.dfamerica.org/

The NC Dementia Friendly Communities & Hospitals Collaborative meets on a quarterly basis (virtually) to share best practices, generate new ideas and network with similar programs across the state and country. Contact us to learn more and become part of the Collaborative!

For more information on dementia friendly communities and definitions please reference the NC Dementia Friendly Communities Standards and Information document here

AARP Family Caregiver Resources for NC

AARP developed this family caregiver guide with you, the caregiver, in mind as a starting point to help you find the services and supports you might need throughout your journey.

Alzheimer's Association

The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.

Dementia Alliance

Dementia Alliance of North Carolina seeks to improve the lives of North Carolinians impacted by dementia as well as empower their caregivers through support, education and research. As a result, we are able to provide a high degree of personal support throughout the entire journey with dementia.

Duke Dementia Family Support Program

The Duke Dementia Family Support Program provides education, support and engagement to people living with dementia and their family care partners. Services are offered free of charge, and no affiliation with Duke Health is required for participation.

Family Caregiver Support

The National Family Caregiver Support Program offers a range of services to support family caregivers.

Healthy Aging NC (Powerful Tools for Caregivers)

Powerful Tools for Caregivers is an educational program designed to help family caregivers take care of themselves while caring for someone else.

Lifespan Respite Care Program

The Lifespan Respite Care Program focuses on enhancing respite services for unpaid caregivers and growing a lifespan respite care system in North Carolina.

North Carolina Caregiver Portal

This NC caregiver portal (powered by Trualta) provides educational content and an intuitive learning environment to healthcare providers, insurers, and employers in the United States and Canada that understand the importance of engaging and educating family members in the informal care of aging loved ones.  

NC Registry for Brain Health

The Registry has two purposes. The first is to get the community involved in brain health research by connecting people with research opportunities across North Carolina. The second purpose is to share information to help people better understand brain health, learn about ways to keep their brains healthy, and find useful resources to assist people who are living with dementia and their caregivers.

Options Counseling

Options Counseling provides guidance to individuals as they make informed choices about long-term services and supports.

Project CARE (Caregiver Support)

Project CARE is a coordinated delivery system that responds to the needs, values and preferences of individuals who directly care for a family member or friend with Alzheimer's disease or related dementia (ADRD).

For more information on any of these dementia initiatives please contact Heather Carter, Dementia Services Coordinator, at heather.carter@dhhs.nc.gov or by calling 919-855-3416