Hard to believe it is November again already. And with November comes National Alzheimer’s Awareness Month. So much has happened on the Alzheimer’s front since this time last year.
I have never been more optimistic that a breakthrough is on the horizon. Dr. Huntington Potter at the Anschutz Alzheimer’s Research Center right here in Denver has an exciting clinical trial going on with promising results so far. It really feels to me like some big news may be around the corner from the scientific community.
In the meantime, family care partners for those living with various forms of dementia need resources, support, and last but not least, rest!
Although all three of my parents who suffered from Alzheimer’s have left us, I remember well the journey my family traveled for 16 years through the world of dementia. Fortunately, someone recommended that we reach out to the Alzheimer’s Association and thankfully we did. They provided, classes, support groups, and a 24/7 helpline so we could call day or night and ask any question, no matter how basic or complicated. A real person was always on the phone to help us through the roughest times. So here comes the number; write it down… you will never be alone with this number at hand. 800.272.3900. The Alzheimer’s Association is also the largest private funder of dementia research. The bottom line is that these folks are just great – they will help you find the resources you need and care about you and your family throughout your journey. And they don’t care what type of dementia your family may be dealing with.
This might be a good time to mention some other great resources and in the process, give a brief overview of my involvement in the world of dementia since losing my folks to Alzheimer’s. People sometimes say they bet I am relieved to be “done” with Alzheimer’s and I tell them, “Oh no, I am just warming up”. I will not rest until we get Alzheimer’s and other forms of dementia off the planet.
That is one reason why I’m involved in a new project called Dementia Friendly Denver. We are a grassroots, not for profit initiative that is part of Dementia Friendly America, which was introduced a few years ago at the White House Conference on Aging. There are now 130 American cities joining in this all-volunteer mission to make communities more dementia friendly and improve the lives of those living with various forms of dementia. The DFD team I chair recently partnered with the University of Denver to host a two-hour community education event. You can check out the slides from that event and upcoming news at http://www.dementiafriendlydenver.org/.
The reason it is important to think about all types of dementia in November during National Alzheimer’s Awareness Month is that only 50% of those with dementia get a diagnosis. I want to spread the word that it is important to know which type of dementia your loved one may have. Alzheimer’s accounts for about 70% of all cases, but there are other types of dementia, like Vascular, Lewy Body, and Frontotemporal to name a few. Dementia Friendly Denver has a Resource Guide listed on the website I mentioned above that will connect you with 800#s and websites for each type of dementia support. You can also get a referral list of doctors who can help you get a specific diagnosis at the Alzheimer’s Association helpline. Here comes the number again….800.272.3900.
And of course, all of this is why I joined the MINES team a few years ago providing dementia lunch and learns and coaching for our EAP clients.
I guess you can tell that I feel passionate about our need to find a prevention, treatment, and cure for Alzheimer’s disease and that I really feel we are close. In the meantime, November is a month to help each other find the resources we need as family caregivers and most importantly, to take care of ourselves so we can care for our loved ones. Respite is a term for giving caregivers a break and it is critical for those of us caring for someone with dementia. Everyone needs to recharge. So let me give you another resource…..you can find a Respite Locator on the website coloradorespitecoalition.org. It provides a list of respite options which you can then investigate.
OK, it would be totally inappropriate to wish you all a “Happy Alzheimer’s Awareness Month” so instead I will tell you that I am happy to have new hope for a breakthrough. I am also happy that Congress voted to include an additional $414 million in next year’s Alzheimer’ Research budget. That is real progress.
Enjoy the month of November with your family, don’t hesitate to get the help you need now as a care partner and take care of yourselves so we can celebrate when the breakthrough comes. I will be throwing a party for the world and you will all be invited! – JJ
To Your Wellbeing,
MINES Affiliate and Alzheimer’s/dementia Expert