Dementia Society of America - Good People News Spotlight on Organizations Who "Give It Up"
By Michael Castro
When people think and worry about disease and health issues, diseases such as cancer are the most often thought of. It seems like everyone has been affected by cancer in some shape or form and that the public has a good deal of educational information about the many diseases of cancer. The same is not true exactly with dementia. One organization hopes its efforts help change that.
Good People News today had the pleasure of speaking with Kevin Jameson, the founder and volunteer president of Dementia Society of America® (DSA). Kevin founded national nonprofit DSA in 2013, inspired to action to help people, by his experiences with a loved one with dementia. Through its volunteers, the organization seeks to provide support and provide resources for those suffering from dementia and their loved ones and caregivers.
Along with providing education and resources for those affected by dementia, educating the public is a primary goal of the Dementia Society of America. They are an organization that’s “focused on hope.” It is Kevin’s hope that those suffering from dementia can be resilient and still thrive despite the condition. Kevin’s organization helps provide material, planning booklets to educate, as some practitioners and doctors typically are limited in time and ability. They also direct inquiring individuals and families towards local resources with legal issues and for non-medical benefits such as music, art, and movement therapies to enhance lives.
I started off asking Kevin, what exactly is Dementia? Kevin communicated that the term “Dementia” is not a disease in itself, but rather the expression of a disease. It is an umbrella term, encompassing several types of neurological diseases. To have a dementia diagnosis, you have to lose 2 activities of daily living: dressing, eating, bathing, toileting, etc. The other aspect of dementia is that it is progressive, meaning it goes on getting worse and worse. It is a fatal condition, because it eventually shuts our body down, from the damaged brain tissue.
There are several types of Dementia: Alzheimer’s Disease, Lewy Body Disease, Fronto-temporal Dementia, and Vascular Dementia
Some other conditions that may also exhibit dementia: WKS, CJD, TBI, CTE, and normal pressure hydrocephalus.
The interview continued.
GPN: What progress is being made towards a cure?
Kevin: Although there are presently no cures, and pharmaceutical treatments have been very difficult to find, what has improved is testing for various causes of dementia. It has become more precise.
It is now possible for patients to be tested for Alzheimer’s disease through a new PET scan, that measures beta-amyloid build-up, or “plaque” in the brain inhibiting normal neuron-to-neuron connectivity. Many drug trials had been failing, and it turns out in some cases because of misdiagnosing it as Alzheimer’s, instead of other causes. The testing is now more accurate before they go into clinical trials. New technology should, in the future, lead to more positive outcomes in terms of drug treatments..
GPN: How can a family prepare? What would you suggest as to how people take care of themselves after getting the diagnosis?
Kevin: A family can prepare to the best of their ability using the C.Y.P.R.E.S.S.™ acronym. It comes from the one-hour care planning TV-show that they created entitled The Dementia Action Plan™. It stands for: Connect, Yourself, Professionals, Realize, Educate, Scribe, Specialists.
Those living with dementia and their loved ones should stay connected with others, and pay close attention to their own wellbeing, essentially caring for oneself. They should get all the help they can from professionals such as therapists, realize what challenges lay ahead, and educate themselves on the various causes and diseases. Also, it is beneficial to be a scribe and keep written notes of events, and issues the person is having, and to seek out specialists to provide the best care.
GPN: What is being done for the “ quality of life “ aspect of living with dementia?
Kevin: There are many initiatives that are being explored, developed, and tried. One of the more well know is called The Eden Alternative®, and is focusing on moving away from the institutional hierarchical (medical) model of care into a more constructive culture of person-centered care, where those living with dementia are encouraged to direct their own lives. Eden Alternative seeks to create care communities that are less restrictive than nursing homes and are focused on life enrichment.
GPN: Finally, how do you fund your organization and what does the funding provide and how can the public help?
Kevin: We are able to provide support and local resources for individuals and families solely through donations. Funds are used to provide the necessary education and planning. Awards for research are also given, along with numerous other programs, designed to promote Dementia Awareness. “Know Dementia” is our “Call to Arms.”
You can donate at Dementialsociety.org or by calling 1-800-DEMENTIA.
The best news we could have is that successful treatments are made readily available for those with dementia, and that the public becomes super-educated regarding it. The Dementia Society of America is engaged in that noble effort and we commend them and wish them the best of luck!
For up to the date information, please visit the Dementia Society of America on social media @dementiaorg
And check out the Dementia Society’s educational presentation below for not only those individual’s living with dementia and their loved ones and caregivers, but for the general public as well. The whole mission of the Dementia Society of America is to EDUCATE. As a special gift to our readers, DSA is providing you a promo code to watch the entire show at no cost. Simply use the code “free,” at checkout.
https://www.dementiasociety.org/seminars
