Tag Archives: Banner Alzheimer’s Institute

How You Can Help Stop Alzheimer’s

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Alzheimer’s Registry Aims to Wipe Out Disease

Originally from AARP Blog and posted by 

What if you could play a part in preventing Alzheimer’s disease? Maybe you can. The Phoenix-based Banner Alzheimer’s Institute (BAI) has established an online registry for those at risk of developing a disease affecting more than 5.4 million Americans.

Many signing on are adult sons and daughters involved in the caregiving of a parent with Alzheimer’s. The ultra user-friendly Alzheimer’s Prevention Registry is a national initiative that connects would-be sufferers with researchers. Participants learn the latest developments in the field and have the opportunity to participate in prevention trials. There’s also an online community.

The goal is to get 100,000 people in the registry by next July. Enrollees include Nancy Hetrick, 45, and her three sisters. Hetrick’s father developed early on-set Alzheimer’s in his 50’s. His father (Hetrick’s grandfather) was one of 14 children; all developed the disease.

Hetrick’s mother and her mother’s two siblings also have Alzheimer’s. The younger women plan to participate in any prevention studies for which they’re eligible.

The registry is part of a worldwide effort to tackle a disease that may impact 7.7 million nationwide by 2030.

Research released this month suggests there may be changes in the brain more than two decades before the first signs of Alzheimer’s surface. A study underway between the National Institutes of Health, BAI, the University of Antioquia in Colombia and Genentech is focused on cognitively healthy participants expected to get Alzheimer’s because of family history.

The group is studying 300 Colombians from an extended family who share a rare genetic mutation that usually brings on Alzheimer’s around age 45 and also will involve participants from the United States.

Two Alzheimer’s factoids:

  1. Recent research conducted by Edge Research of 1,024 adults ages 18-75 shows nearly half of American adults have a personal connection to Alzheimer’s
  2. 7 out of 10 worry they or someone they love will have memory loss or Alzheimer’s

Would you consider joining a registry for Alzheimer’s or another disease with a genetic component? What is your biggest worry about getting Alzheimer’s?

Follow Sally Abrahms at www.sallyabrahms.com and on Twitter. Take a look at her November AARP Bulletin story on the emotional side of caregiving.

Live in PHX? Then Save the Date: May 10

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Couple of Phoenix-area happenings that I wanted to share… maybe you can help us spread the word.

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Help a sister out!

EVENT 1 (12-3 p.m.)

My friends at the Banner Alzheimer’s Institute are hosting a 3 hour program for friends and family of loved ones with Frontotemporal Dementia (FTD, sometimes called Pick’s disease) to help them better understand and cope with the symptoms, disease progression and the kind of care required. You’ll hear from experts in the field of this dementia, get your questions answered and meet others who are in the same boat.

Remember, you may feel like you’re an island unto yourself when dealing with this, but you are never alone. You just have to take that step, and this is a great first step.

Space is LIMITED, so register for this workshop STAT. Email Deidra Colvin at Deidra.Colvin@bannerhealth.com

EVENT 2 (6-8 p.m.)

YAAA!, Young Advocates for the Alzheimer’s Association, will be hosting its supportive social starting at 6 p.m. at Cheuvront Restaurant & Wine Bar. YAAA! is for younger adult caregivers (18-39) and the intent is to focus on advocacy at the state and federal levels… This is your chance to make your voice heard! Our mix and mingle starts around 7 p.m… this is a great opportunity for caregivers, friends and family to connect, talk to people in the field and find a real support system here in the Valley.

A Little Something Called Frontotemporal Dementia

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I’ve written nothing about this disorder. I don’t think I’ve ever uttered the words, FRONTOTEMPORAL DEMENTIA. This kind of dementia never really crossed my mind. For so long, we were told that mom probably had mixed dementia—Alzheimer’s disease and Vascular Dementia. I accepted that “diagnosis.” I suppose I evan began to define my mom as that. But as her behaviors became increasingly worse, I did start to wonder if there was something else going on…. even dad thought there was something else going on. We read about Alzheimer’s and VD and in the beginning she fit the mold…….. then she shattered the mold.

Now we have an answer. Frontotemporal Dementia.

While I’m relieved to finally know what exactly is slowly gnawing away at her gray matter, I think this journey would be a lot easier if she actually had Alzheimer’s disease. Maybe not. Everyone is different I suppose.

Below is an interview sent to me by the incredibly amazing people at Banner Alzheimer’s Institute about FTD, which aired on our NPR station here in Phoenix, KJZZ. Hope you’ll take a listen and learn more about this lesser known dementia.

DEMENTIA THAT’S NEITHER ALZHEIMER’S NOR EASY

A New Diagnosis

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One of my goals for this blog was to offer some tools, tips and lots of candor to those who are embarking on this twisted, ever grotesque and incredibly LONG journey. When it became painfully clear my mom had some kind of dementia, I had no idea where to turn or what to do. Everything just seemed incredibly confusing and overwhelming….. Dad was struggling to cope and I lived 5 hours away in New York City. My visits were frequent, but still…. there was always something to do or something I was forgetting to do. Frankly, figuring out the right move, which pills to give her, finding the right doctor and learning how to deal with your own baggage was frustrating and mostly infuriating…. and to drive home this point, it took me almost three years to find out that the Banner Alzheimer’s Institute was located smack-dab in the middle of Phoenix………………. all this time…. a 10 minute drive away…. were we too late?

Fast Forward…………..After convincing dad that we had to go, we finally got our appointment (and the thumbs up from the insurance company—dementia ain’t cheap folks) 2 days before my big trip to SE Asia. The result: Frontotemporal dementia.

Symptoms include:Increasingly inappropriate actions (BIG CHECK)
Euphoria
Lack of judgment and inhibition (BIG CHECK)
Apathy (CHECK)
Repetitive compulsive behavior (OH GOD, BIG FAT CHECK)
A decline in personal hygiene (SORTA CHECK)
Lack of awareness of thinking or behavioral changes (UM DUH! CHECK)

So do I feel better knowing that my mother is going to continue to decline and exhibit even more demented behavior? No. But I am relieved to have a new “diagnosis” (can’t really know until she is autopsied) that makes sense and allows me to understand what’s going on… I know this doesn’t change the end game…. but it gives me peace knowing that we are doing what we can to make her life and our lives just a little bit better.