It’s November and of course that means that the holidays are just around the corner, but it also means that it is once again National Alzheimer’s Awareness Month. You may see familiar buildings in the greater Denver area lit in purple to remind people that the quest for a world without Alzheimer’s is more determined than ever.
Much has happened since my blog entry last November. All very positive, by the way. I appreciate this opportunity to update you on many things that are happening in the field of Alzheimer’s/Dementia. As a reminder, the reason for my passion and commitment around this subject is that three of our four parents were diagnosed with Alzheimer’s disease within a year and a half of each other, and they lived for 16, 14, and 11 years with the disease. Although we lost our last “Lovie” four years ago, I remember vividly those many years of caregiving and how challenging it was to juggle work/life balance issues.
I have been with MINES and Associates for six years now and present a lunch and learn session called Alzheimer’s/Dementia A to Z to our client groups. I am seeing attendees of all ages in the sessions and because we always end the presentation with an explanation of the twelve things we can all do at any age to reduce our risk for dementia or delay its onset. I am seeing more and more young people taking an interest in brain health. I am also seeing an uptick in employees seeking coaching on the topic of Alzheimer’s/Dementia through the Employee Assistance Plan benefits that their employers provide.
One thing is for sure. Going it alone while trying to care for someone with dementia is never recommended. Our community offers a variety of resources to family care partners and I will talk about some of them in this posting.
But first, a quick update on promising research! I continue to be the most optimistic I have been in years that a breakthrough is on the horizon. So much going on! One of the most interesting clinical trials is happening right here in the Denver area at the Rocky Mountain Alzheimer’s Research Center on the Anschutz campus. My good friends and renowned neurologists Dr. Huntington Potter and Dr. Jonathan Woodcock are now in Phase III of the Leukine trial. Leukine is a compound already approved by the FDA for bone marrow stimulation. The Anschutz clinic team discovered that it might have possible benefits for Alzheimer’s as well. Stay tuned – you may be seeing updates on the evening news about the great work being done here in our area. There are also other promising angles on how to tackle Alzheimer’s and other forms of dementia. Current thinking is definitely outside the box – many new cause and effect theories are now being explored by the medical and scientific community.
I spent a week in Washington DC in June this summer, representing the Alzheimer’s Association at our annual Public Policy Forum. Our group spoke with every member of Congress and I am pleased to report that we got the $425 million in additional research funding we requested. That will put the National Institute of Health’s Alzheimer’s research budget at $2.3 billion annually beginning in 2019. The National Alzheimer’s Plan that was written into law in 2010 calls for a prevention, treatment, and cure by 2025. Hope has never been stronger that we are going to meet that goal and get this fixed. By the way, when that finally happens, I will be throwing a party for the world so you will all be invited!
In the meantime, there is much work to do to educate, help, and support families who are living with Alzheimer’s and other types of dementia. The number one question I am asked is what is the difference between Alzheimer’s and dementia. A good way to explain it is to say that everyone with Alzheimer’s has dementia but not everyone with dementia has Alzheimer’s. Vascular dementia from strokes, Lewy Body dementia, and Frontotemporal dementia are other forms of the most common dementias. While Alzheimer’s accounts for approximately 65% of all cases of dementia, many primary care physicians may not be prepared to provide a specific diagnosis. Asking them for a referral to a neurologist or geriatrician can help a family learn what type of dementia they are facing with their loved one.
While there are no treatments that stop the progress of dementia at this time, there are some drug therapies that may help with symptoms in some cases to some extent for some period of time. Asking your specialist about these options can get a conversation started about what might be beneficial for your loved one.
Aside from the dementia coaching provided through the MINES EAP program, The Alzheimer’s Association provides a 24/7 helpline (800.272.3900) that family members can call regardless of what type of dementia their family is dealing with. This is a powerful resource tool for caregivers who have questions or simply need to chat with someone about behaviors, etc.
Another organization that I am involved with is also at the forefront of trying to improve the quality of life for those living with all forms of dementia and their family care partners. Dementia Friendly Denver is part of Dementia Friendly America, a not for profit, grassroots, all-volunteer initiative that was introduced at the White House Conference on Aging in 2015. Our volunteer team is working on eight projects in the greater Denver area and you can check them all out at dementiafriendlydenver.org. The goal of the projects is to make our community more dementia-friendly and to reduce the stigma surrounding the topic of dementia.
And please remember that you can still enjoy the holidays with family members with dementia. The key is to practice the “Holiday Lite” approach. Things don’t need to be extravagant or perfect. Make sure holiday activities and outings are short in length. Our Lovies wear out faster than we do. An hour for us is like five hours for them. And make sure holiday decorations that look like candy or food are out of the reach of those with dementia. Be prepared for upsets due to the disruption of routines during the festivities and provide rest periods for everyone!
So in closing, as we enter November and National Alzheimer’s Awareness Month, remember that you are not alone. Utilizing the dementia resources available throughout our city can help you get organized and knowledgeable. And most importantly, don’t forget to take care of yourselves. Respite care is available in our community and the Alzheimer’s Association can help you investigate options. Exercising, taking walks, meditation, and outings with friends can help alleviate the stress associated with being a dementia caregiver. Best wishes for a peaceful and enjoyable holiday season! – JJ