Alzheimer’s Association http://www.alz.org @alsassociation
St. Jude’s Children’s Research Hospital http://www.stjude.org @StJude
World Water Relief http://www.worldwaterrelief.org @wwrglobal
Unicef http://www.unicef.org @UNICEF
Fisher House http://www.fisherhouse.org @FisherHouseFdtn
This was copied from the Alzheimer’s Association’s Advocate application.
The Alzheimer’s Association and Alzheimer’s Impact Movement (AIM) are pleased to support the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017. This bipartisan bill would require the development and implementation of a coordinated national strategy to recognize and support family caregivers .
Caregiver-forehead-kissMore than 5 million Americans are living with Alzheimer’s and, without significant action, as many as 16 million Americans will have Alzheimer’s by 2050. Today, another person develops the disease every 66 seconds; by 2050, someone in the United States will develop the disease every 33 seconds. This explosive growth will cause Alzheimer’s costs to increase from an estimated $259 billion in 2017 to $1.1 trillion in 2050 (in 2017 dollars). These mounting costs threaten to bankrupt families, businesses and our health care system.
Unfortunately, our work is only growing more urgent. In addition to its economic impact, Alzheimer’s places a tremendous burden on caregivers since caregiving can be an emotionally, physically and financially draining role. In 2016, 15.9 million unpaid caregivers provided 18.2 billion hours of care valued at more than $230 billion. Caregivers of people living with Alzheimer’s and other dementias also report higher levels of stress, depression and worse health outcomes when compared to others who are providing care to individuals without dementia. As a result, Alzheimer’s caregivers incurred $10.9 billion in additional health costs last year.
The RAISE Family Caregivers Act (S. 1028) would provide much needed support to these caregivers by facilitating the creation of a national strategy to address the many issues facing caregivers today including: education and training, long-term services and supports, and financial stability and security. Improving assistance for family caregivers will have a positive impact on caregiver health and well-being and will result in a higher quality of care for their loved ones. This legislation is also consistent with the National Plan to Address Alzheimer’s Disease, which seeks to expand and enhance training, education and support for caregivers of people with Alzheimer’s and other dementias.
I recieved a call yesterday from a lady that has been a 24/7 caregiver for 8 years. She spoke at one point about helplines. She said they have never helped her and have no value.
I went for a short walk and pondered. I’ve gotten so much feedback with praise concerning helplines.
I walked and this thought came to me, an analogy: Down the road from mom’s is a fire department. A sturdy looking building, clean modern equipment and a well trained staff. They have never helped me. I have never needed them.
Am I grateful they are there? Yes, because they have helped others, put out fires, saved lives and save our possessions. Do I appreciate them? YOU BET I DO! THOSE FOLKS ARE ABSOLUTELY AWESOME!
I know they will help anyone they can. I know they would help me.
What I’ve heard about helplines:
- I needed someone to talk to and they listened, for a long time
- I had never heard of daycare and can afford it a couple of times a month. The lady on the helpline told me about daycare. It’s a part of our lives now.
- Had no idea that support groups had the ability to change my life
- I wanted to know how research was going and if I could help by being in a clinical trial. I am in a clinical trial now and have been for over a year
- I thought I was supposed to try and set my dad straight and changing that one behavior changed our lives
- They arranged to meet with my family to explain what was coming
This could go on and on. Maybe they can help you, maybe not. I hope they can.
Judy (false name) and I talked again last night and she gave permission to speak covertly about our conversation.
I’m Grateful for the Fire Department and the Alzheimer’s Association.
After speaking with a freelance brand strategist a few times, and much thought, it became clear to me that Across the Land needed a do over. The change would need to result in a narrower focus that would fit with my current situation. I’m a 24/7 caregiver with limited time and resources.
Keeping mom safe and maintaining our physical and mental health is my top priority. With that in mind, what can be done that has the highest possibility of positively impacting lives affected by Alzheimer’s disease?
Part of the answer came quick. A young lady in North Georgia spoke these words to me a few years back. “It’s about the caregivers Jack” After 65 months of raising awareness full time, we agree.
My focus will be on helping caregivers, and my qualifications are limited. In my opinion, the Alzheimer’s Association’s Helpline has great value. Finding ways to get that number in front of caregivers has merit. Getting the number in front of them is a necessity.
Senior care facilities need to know they are appreciated. Calling or, on occasion, visiting them will be another part of the focus.
Other activities will be spur of the moment and hopefully will be few.
My use of social media will continue to evolve.
P.S. The brand strategist sparked this change. Strength was given to it by some questions a young man in Romania asked me. Thank you Cristian Mihai.
If you need information concerning Alzheimer’s disease, let these folks become your partner in care.
To give out the Alzheimer’s Association’s 24/7 Helpline phone number to as many folks as possible.
That was the focus on the road as I gave out cards and bracelets that highlighted that number. The television, newspaper, and radio interviews had the same focus, as did the signs on the car. That was the focus on social media.
If you need help concerning alzheimer’s disease, take time to call 1.800.272.3900 anytime. The call will be answered by a trained counselor for the Alzheimer’s Association.
Two pieces of information seek to explain the importance of Empathy. The first will be paraphrased.
It is said that both the speaker and the listener benefit from the listener being empathetic.
“Seek first to understand and then to be understood” Stephen Covey
“If you’re like most people, you probably seek first to be understood; you want to get your point across. And in doing so, you may ignore the other person completely, pretend that you’re listening, selectively hear only certain parts of the conversation or attentively focus on only the words being said, but miss the meaning entirely. So why does this happen? Because most people listen with the intent to reply, not to understand. You listen to yourself as you prepare in your mind what you are going to say, the questions you are going to ask, etc. You filter everything you hear through your life experiences, your frame of reference. You check what you hear against your autobiography and see how it measures up. And consequently, you decide prematurely what the other person means before he/she finishes communicating.” This paragraph came from a HuffPost article. Here is the link. https://m.huffpost.com/us/entry/5609892
My calls to the Alzheimer’s Association helpline, and there have been several, were all answered by very empathetic and patient counselors. That alone, helped shape how well I moved on.
If you need information concerning alzheimers disease, take time to call 1.800.272.3900 anytime. That call will be answered by a trained counselor for the Alzheimer’s Association.
Sue Griffin, Ph.D.
She is an internationally known Alzheimer’s disease researcher at the University of Arkansas for Medical Sciences. (UAMS)
Such a patient lady. She allowed me to spend hours asking questions as I was working at gaining a minimal understanding of research.
This picture is from 2013
What do most people think about when they hear the word Alzheimer’s? Elderly folks probably, and that memories are lost. After that, most people I speak with that are not intimate with the disease, are clueless. Of course, memory loss is the tip of the iceberg and young people do get Alzheimer’s.
Most Alzheimer’s patients cannot speak for themselves, and most caregivers do not have the time.
This post isn’t to explain the intricacies of the disease, but it is meant to say we need more advocates. We need more folks that are willing to speak for Alzheimer’s patients and caregivers. If you would like to help, please contact the Alzheimer’s Association at 1.800.272.3900.
Jerome H. Stone founded the Alzheimer’s Association with the help of several family support groups after meeting with the National Institute on Aging in 1979.The Alzheimer’s Disease and Related Disorders Association was incorporated on April 10, 1980. In that year, the National Institutes of Health (NIH) invested $13 million in Alzheimer’s disease research. In 1982, President Ronald Reagan designated the first National Alzheimer’s Disease Awareness Week. The Alzheimer’s Association founded more chapters and started its own research program. Based out of Chicago, Illinois, the Alzheimer’s Association is the largest non-profit funder of Alzheimer’s disease research.