Tag Archives: Alzheimer’s Association

one of my heroes is Jerome H. Stone #ENDALZ

His wife was diagnosed with Alzheimer’s Disease in 1970, which made him aware of the need for a leader in this field, so that caregivers, patients, prevention, and research initiatives for better treatments and a cure could be united. This determination led him to help create the Alzheimer’s Association in 1979. He passed away on Thursday, January 1, 2015. R.I.P. sir, and thank you for your work.

a caregiver story

she came out on U.S.Highway 70 to tell me she was a caregiver for her mom, and that she, as the caregiver, was struggling some. She had not heard of the Alzheimer’s Association, so she took one of my cards and agreed to give me some feed back.

A couple of months later she phoned me to say she made the call, listened, heard something she liked and had already attended two support group meetings. The last time we chatted she is still involved with the Alzheimer’s Association.

This happened in 2013 while I was crossing America.

Alzheimer’s – some optimism #ENDALZ

Failed clinical trials and the continued lack of money for research leaves me with a feeling of pessimism. Bill and Melinda Gates getting involved is big to me, as they announced they are going to help scientists examine other theories. The longitudinal study in Columbia is exciting because they feel certain that everyone in the study will get alzheimer’s. The NIH is setting aside some money for new scientists, with fresh ideas. Thoughts of those things brings a feeling of optimism.

Hearing success stories from caregivers, accounts of them adapting, reading about laws being passed that may help them, and reading about the growth of support groups, memory cafes and more community involvement brings optimism.

Reading that our nation, as a whole, is eating healthier and exercising more is great news. That’s talk about prevention right there, good talk.

A lot of progress has been made in many areas. Necessity, sometimes, can be the mother of invention.

search for a treatment, or a cure for alzheimer’s – a sense of urgency

“We are not, at the moment, limited by ideas. We are not limited by scientific opportunities. We are not limited by talent. We are, unfortunately, limited by resources to be able to move this Enterprise forward at the pace that it could take.” Frances S. Collins M.D. , Ph.D.

Mr. Collins has his finger on the pulse of this situation. Mr. Collins, a Geneticist, is the Director of the National Institute of Health.

Personally, trying to remain positive, left aside, and focusing on how I view the reality of our current situation, this is my opinion.

Treatment or a cure for alzheimer’s disease may have as many as ten viable theories, but we may have research dollars to fully examine only two or three.

We need more dollars or a lot of luck, or maybe some of both.

The Alzheimer’s Association estimated that alzheimer’s disease cost America $259 billion dollars in 2017, and less than $1.3 billion was marked for research.

Another personal observation: The Sense of Urgency, in the public, in the press and coming from our legislative bodies doesn’t feel strong. The Sense of Urgency amongst Advocates is to be admired.

Charities I support

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

 

about the Raise Family Caregivers Act 

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.

the helpline and the fire department 

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. 

a new direction for Across the Land 

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. 

an important number for Alzheimer’s caregivers 

If you need information concerning Alzheimer’s disease, let these folks become your partner in care. 

what was the focus, with hindsight, of “Across the Land”

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.