The Alzheimer’s Association www.alz.org estimates there are currently more than 130,000 Georgians living with Alzheimer’s disease and that by 2025 that number will grow to 160,000. The cost to Medicare for individuals with Alzheimer’s or other related dementias already nears half a billion dollars in Georgia. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers have more than $9.3 billion in additional healthcare costs of their own.
What isn’t known is the exact number of individuals in Georgia that have Alzheimer’s disease or where they live, or how their needs are being met, or if their needs are being met. Without that critical data, the state and the medical community is not really prepared for a growing aging population.
In 2013, the Georgia Legislature created the Georgia Alzheimer’s and Related Dementias (GARD) State Plan Task Force http://dhs.gerogia.gov/sites/dhs.georgia.gov/ files/GARD-Plan.pdf to create a state Alzheimer’s disease plan. A key recommendation of the plan is to develop a state registry to house Alzheimer’s disease and related dementias data.
The Georgia Alzheimer’s Disease and Related Dementias Registry administered by the Georgia Department of Health and the online portal for submitting data was launched in March www.dph.georgia.gov/alzheimers-registry making Georgia one of only four states in the country with an Alzheimer’s disease registry.
The registry will have a mix of existing data sources from health plans and government repositories, including Medicare and Medicaid, plus patient information reported by physicians. The Registry along with the state’s Alzheimer’s disease plan will help people with dementia, their families, and caregivers so they will have ready access to information, support, and services.
In addition, the National Institute of Health (NIH) held the “Alzheimer’s Disease Research Summit titled, www.nia.nih.gov/about/events/2014/alzheimer’s-disease-research-summit-2015. NIH Director Francis S. Collins told the attendees, “A portal to pool complex biomedical data and analyses regarding Alzheimer’s disease has been launched by the Accelerating Medicines Partnership” www.nih.gov/science/amp/alzheimers.htm.
In addition, the National Institute for Aging www.nia.nih.gov within NIH, has a public database of research projects underway including their funding sources, known as the “International Alzheimer’s Disease Research Portfolio” to help scientists spot neglected study areas www.nia.nih.gov/research/dn/international-Alzheimer’s-disease-research-portfolio.