Plan of Action
This Spring I was appointed to Pennsylvania Governor Tom Wolf’s Alzheimer’s State Plan Task Force. The mission is to implement and champion the goals and recommendations of the State’s Plan for Alzheimer's Disease and Related Disorders.
This Fall I will be presenting at the American Bar Association’s Law and Aging Virtual Conference on the intersection of dementia, the law and communities of color.
In November as a Board Member of the newly formed International Dementia Research Foundation we will be hosting a virtual conference on Covid-19, Communities of Color and Dementia.
Closing out 2020 The Year of the Nurse and Midwife I will be screening our film followed by a virtual panel discussion hosted by the University of Pennsylvania School of Nursing.
Moving Ahead in a Covid-19 World
As soon as the country went into lock down, resourceful partners enabled us to continue to show our film and tell this important story.
Drexel University's College of Nursing and Health Professions held a Virtual Conference on Dementia where, via Zoom, I presented the issues of Alzheimer’s, Communities of Color and the intersection of Covid-19.
The following month we screened "In Our Right Mind" and gave a lecture, again virtually, as part of the Bayada Health Speaker Series.
Trailer: "In Our Right Mind: Alzheimer’s and Dementia’s Impact on Communities of Color"
Midday Maryland / 2WMAR-ABC Interview
Everyday I come across more information and organizations dedicated to bringing awareness, support and resources so periodically I will be updating this list.
Resources & Information
The leading voluntary health organization in the US for Alzheimer’s research and care.
Alzheimer’s Los Angeles:
They provide a host of free support services to people with Alzheimer’s, their families and communities
Us Against Alzheimer’s:
Works with organizations to help Alzheimer’s community and supports research and drug discovery.
Center for Outreach In Alzheimers Aging and Community Health:
Focused on research and creative, community based outreach aimed at the African American community.
Leaders Engaged on Alzheimer’s Disease (LEAD):
90 member organizations committed to stopping Alzheimer's and dementia.
Source for current research in life sciences, pharmaceutical, clinical trials and healthcare news.
Cure Alzheimer’s Fund:
Funds research with the highest probability of preventing, slowing, or reversing Alzheimer’s disease.
Alzheimers Foundation of America (AFA):
AFA's mission is to provide optimal care and services to individuals living with Alzheimer’s disease and related illnesses and to their families and caregivers. Alzfdn.org
Alzheimer’s Research UK:
Based in the United Kingdom focused on research Founded in 1992 to defeat Alzheimer's and dementia through research.
Although providing care services in the United Kingdom this site is a great resource for innovative care services and approaches.
Fisher Center for Alzheimer’s Research Foundation
Fisher foundation focused on research to find a cure and support for caregivers.
Many research teaching institutions and several of the organizations listed above post clinical trials on their website.
A convenient resource is The National Institute for Aging which is a locator for clinical trials.
There are a host of wonderful blogs out there, most started by people who are caregivers for their loved ones with Alzheimer’s and Dementia. Here are a few that I look to for helpful information and insight:
Alzheimer's Reading Room
Bob Demarco’s blog is widely considered the gold standard providing a wealth of information, insights and resources. Their mission: to help everyone to better understand, cope, and communicate with a person living with dementia.
Terri Anderson created CareGiversDepot" as a centralized place to share stories,
tips, and advice”. She wanted a place to provide answers for long term care and support that was not available on line.
This is a general site for caregiving but their website blog has posts that shed light on the challenges faced by caregivers.