It is sadly ironic that it was former president Ronald Reagan who designated November as National Alzheimer’s Awareness Month in 1983. Reagan’s efforts and his own personal experience with Alzheimer’s disease did much to bring this mysterious and stealthy condition to the nation’s attention. But it did nothing compared to the attention that the nearly 6 million Americans today who have been diagnosed with Alzheimer’s and the 16+ million caregivers who support them lend. The number with diagnosed Alzheimer’s is expected to double in the next ten years, and experts are concerned that there may not be enough family caregivers to meet the needs. Everybody knows someone whose family knows Alzheimer’s.
The number of assisted living centers as well as new types of facilities is increasing, but there also has been a revolution in the on-line resources available to families confronted with the challenges Alzheimer’s brings. Here are four that I recommend to meet needs from early stage diagnosis through to the rest of the trajectory families will face:
- The Alzheimer’s Association offers a searchable “library” called the Green-Field Virtual Library. It offers searchable content and e-books on a range of topics from the range or neurological conditions of which Alzheimer’s is one to caregiving patient health.
- The Alzheimer’s Association also hosts a number of independent sites with their own searchable, relevant content: Caregiving Fundamentals, Clinical Trials, Alzheimer’s Research and Alzheimer’s Stages.
- The Alzheimer’s Association recognizes that the burning question for every caregiving family centers on finding a cure. We are not there yet, but for those of you who follow my blog, you know that a lot is being done to advance the effort toward an Alzheimer’s Cure.
- On a more local and global front a group based originally at Northwestern University has created a digital platform for caregivers called June Care. June Care is a digital care platform that empowers families to support their relatives diagnosed with Alzheimer’s. The June Care team has built an online therapeutics program made to manage and change behaviors around caregiving. June Care is partnered with the Alzheimer’s Prevention Registry and is actively enrolling caregivers in Illinois — Ideal participants are full-time family caregivers who care for persons with dementia and are looking for support. Because these are pilot studies, there is no cost to participants.
So, while there is not yet a cure, there is both hope and help. Please feel free to search our Blog as well as the other resources we work to make available to families who have been thrust into the caregiver role to a loved one with any form of dementia. Also, please let me know your questions at firstname.lastname@example.org.
Charlotte Bishop is an Aging Life Care Advisor, Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. She also is the co-author of How Do I Know You? A Caregiver’s Lifesaver for Dealing with Dementia.