It’s Time To Expand Our Views On Dementia

Remembering each individual as he or she was prior to their journey with AD will go a long way toward helping family members deal with the devastation that is Alzheimer’s Disease or any dementia. Remember them while recognizing the uniqueness of their journey and yours as caregiver and/or family member and friend.

Alzheimer's Speaks Blog

It’s Time To Expand Our Views

By Lori La Bey founder of Alzheimer’s Speaks

Lori_040_1LQSoftCroppedIt is a common statement to hear someone say, “When you’ve met one person with dementia, you’ve met one person with dementia.”  I believe we need to expand this statement and also understand and accept that “Once you’ve met one care partner, you’ve met one care partner and that each and every environment we are in with a person with dementia is constantly changing.”  Nothing is a given.  We must be prepared for that.  We must develop a toolkit which can offer fluid and spontaneous tools to shift perceptions and reactions to care.  It it time to stop being limited by our fear of failure and instead switch to an attitude that we should be afraid of not trying!

My personal motto is, “It’s about progress, not perfection.”  We waste an awful lot of time, energy…

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First Post of 2014 by Michael Rafii M.D. Ph.D

Driving on an empty road towards the setting sun 2014In this first blog of 2014, I would like to review some of the highlights from the world of Alzheimer’s disease research in 2013, as well as the new directions that we will likely be heading in 2014.

Advances in Brain Imaging 

Advances in brain imaging, specifically amyloid PET scans, have led the way towards earlier identification of Alzheimer’s. Their widespread use in larger studies has made it possible to visualize the presence of beta-amyloid deposition in individuals with no symptoms.

The year began with the publication of additional data showing that amyloid deposition in the brain leads to atrophy, or shrinkage, of specific brain areas, even before patients develop memory loss. Research groups in France, Australia and the United States reported longitudinal studies of amyloid deposition in the brain, demonstrating that its presence predicts subsequent brain atrophy and cognitive decline.

Additional developments in brain imaging were made with results of Avid’s Tau tracers, both of which allow for visualization of the abnormal Tau protein that contributes to the formation of the neurofibrillary tangles of Alzheimer’s. Tau PET scans will undoubtedly become a critical tool in Alzheimer’s research during the next few years, much like amyloid imaging has been so important since the first papers were published on its use nine years ago.

Understanding Alzheimer’s in People with Down Syndrome

In the spring of 2013, the National Institutes of Health held a meeting focusing on Alzheimer’s disease among people with Down syndrome, bringing researchers together to discuss ways to develop a consortium with an aim to understand Alzheimer’s in this highly susceptible population.

– Every person with Down syndrome (DS) will develop AD pathology by age 40

– Half of the Down Syndrome population develops dementia by age 60

The Down Syndrome Biomarker Initiative (DSBI) pilot study was launched this year as a feasibility study of a planned large-scale study to discover indicators of Alzheimer’s disease in Down syndrome, with the ultimate goal of better understanding brain aging and Alzheimer’s in adults with Down syndrome.

Economic Impact of Dementia

A major publication in the New England Journal of Medicine by the RAND Corporation estimated the economic cost of dementia to the United States was approximately $203 billion in 2010. This paper garnered major attention, as it was a well conducted analysis of the economic impact of dementia. The sheer dollar amount is greater than the cost of any other disease faced by our society and is expected to rapidly increase in the next decade.

Trials and Tribulations

2013 was also the year when the long awaited results of the phase III IGIV study were presented, which were unfortunately, negative. Additionally, researchers studying the drug Bexarotene were able to replicate some, but not all of the previously reported effects of this drug on memory and beta-amyloid in mouse models of Alzheimer’s disease. Nonetheless, a placebo controlled clinical trial of Bexarotene was launched this year for the treatment of Alzheimer’s. Results are expected mid-year in 2014.

Prevention and Early Intervention

Perhaps one of the biggest events in the Alzheimer’s research world this year was the launch of the first clinical trial to prevent Alzheimer’s dementia in the general population. The trial, Anti-Amyloid in Asymptomatic Alzheimer’s Disease, or A4, is a three-year study looking at the effectiveness of a drug given to subjects who have absolutely no outward symptoms of memory loss but have positive amyloid scans of the brain. Much will be learned when this study is completed about how soon intervention can be offered in efforts to prevent Alzheimer’s disease.

G8 on Dementia

And finally, global focus on dementia was raised at this year’s G8 summit. All G8 nations made commitments to develop an international action plan for research, share information and data across the G8 countries and to provide unprecedented collaboration. The G8 plan includes open access to all publically-funded dementia research, the introduction of a new global envoy for dementia innovation, and the ambitious aim to “find a cure or disease-altering therapy by 2025.” This plan parallels the U.S. National Alzheimer’s Project Act (NAPA), with a goal of “preventing or effectively treating Alzheimer’s” by 2025.

What Is on the Horizon in 2014?

There are an unprecedented number of clinical trials now running with the aim of preventing Alzheimer’s. As data from recent studies suggest, it may only be through early intervention, before the symptomatic stage, that we can truly affect the course of AD and even consider preventing its dementia stage.

We anticipate more discoveries this upcoming year with Tau imaging, as well as the use of biomarkers in asymptomatic individuals. New data is also expected from large-scale whole-genome studies, which are revealing other Alzheimer’s susceptibility genes. We also look forward to data from some of the new mouse models created with these newly discovered mutations to understand how they contribute to the development of Alzheimer’s, and perhaps represent treatment targets.

We look forward to keeping you updated on the world of Alzheimer’s research in the upcoming year and are optimistic that there will be great developments in 2014.  Stay tuned.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Play with a Fidget Blanket/Apron

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Fidget blankets or aprons are way to keep the hands busy of those with moderate to severe Alzheimer’s disease. They feature different textures to feel and simple activities to do, such as zipping and unzipping a zipper. Some people prefer to use blankets, which feel “natural” to keep on their lap for someone with Alzheimer’s disease. Others like to use aprons because they can be worn, and tend to stay in place better than blankets, especially if the person with memory loss likes to get up and move around a lot.

You can purchase them online at stores that cater to Alzheimer’s patients or if you’re crafty, you can make your own using your imagination or as your guide. If you are of the crafty persuasion, some ideas to include are:
1. Different textured fabrics, such as velvet, faux fir, chenille, even burlap or sponges!
2. Zippers
3. Lengths of…

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Read a Book

Alzheimer's Speaks Blog

Read a Book

By: Michelle Remold

One of my favorite past times is reading. I enjoy reading anything by John Steinbeck and have two lists of books I am trying to read my way through. During my undergrad however, I discovered a new literary area that I enjoyed reading. This area was made up of personal accounts from those who had first hand experiences with Alzheimer’s and dementia.

I have read non-fiction books before, but they haven’t really been anything that sparked my interest. Within the last couple of years however, I have found that reading personal accounts of Alzheimer’s and dementia are a strong interest area for me. It provides a glimpse into someone else’s experience with the disease.

Reading personal accounts provides the opportunity to find comfort in similarities of the disease and the differences increases my compassion for those dealing with the disease while increasing  my knowledge. While…

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Lakes Area News

I’m pleased to have been interviewed will sharing our story at Ecumen Bethany Community by our Local TV station. Visit them and like them at http://lakesareanews.tv/watch-now/broadcast and watch the broadcast. My interview is about 6 minutes into the broadcast and I think Chelsea did an excellent job of condensing and relaying our story. I think you’ll find it moving.

I continue to accept speaking engagements as invited and have actually received speaker fees for most of them along with appreciation and gifts and the opportunity to sell my books as others share their journey with me. This truly has become a ministry for me and a tribute to my Dad, Mom and the many loved ones of family members suffering this devastating diagnosis. I pray we find a cure SOON! But until then, lets keep sharing with and loving one another as we remember our loved ones as they were before the disease. lj

My next speaking engagement is at the Lakes Area Memory Awareness Advocacy http://www.memoryadvocates.org/ May 20th.

Check out their 4th Annual Forum information to register to attend http://www.memoryadvocates.org/#!annual-forum

Updated Blog by Deleting Several Posts

I just went through the previous posts and deleted many that are no longer relevant.

We’ve had a wonderfully blessed and busy Christmas Season with friends and family and are now looking forward to 2014 with great anticipation. We were recently blessed with the addition of our first and second great grandchildren and await a third great grandchild in June. Very exciting times for us, the respective parents and Grandparents of these beautiful babies, one girl, one boy and one unknown as of this writing.

Over this past year, since the launch of my book, “His Name Was Merle – Our Journey through Alzheimer’s Disease, I’ve learned a lot about other people’s journeys as well as the best venue for my books to be helpful. I’m finding that “book signings” by themselves are not as beneficial as speaking engagements for specific audiences. When the two, book signings and presentations, are combined it’s a win, win. We usually have great conversations following my presentation about our journey and we sell a few books which helps greatly to cover my expenses so that I can continue to share our story and hopefully help others on a similar journey.

I’ve updated my calendar for 2014. So far we only have 2 speaking engagements but I anticipate more and will post as they are confirmed. Sometimes I’m invited to speak at support groups which I appreciate being a part of but I don’t post those on the calendar as they are specific groups and not generally open to the public.

Please feel free to contact me if your group or organization would be interested in my presentation or my participation at a round table discussion for your support group. It is my goal to do whatever I can to help Alzheimer’s Disease be better understood by family members engaged in the battle with this dreaded disease.

Looking forward to 2014 with hopes of eradicating AD I am sincerely, Lj

Too hot and too wet!

Erika, Lynda, Jeanne and Maurice who replaced Anita for one day. I didn't get a pic with Anita - I'm sorry!

Erika, Lynda, Jeanne and Maurice who replaced Anita for one day. I didn’t get a pic with Anita – I’m sorry!

This past weekend was the huge and wonderfully well attended Little Falls historic craft sale in Little Falls MN. They hosted over 600 vendors and the owner of Good Books offered a group of authors a space in front of her Christian book store. Most of us have done book signings for her/Marge at “Good Book”  but none of us had ever previously met.

In spite of the weather and a lower than normal turn out, I suspect because of the weather, the weekend was an opportunity I never anticipated. We authors now refer to ourselves as the “survivor” authors. Our books ranged from cancer survival to Holocaust survival.  We bonded immediately and shared our publication journeys as well as our survival stories….between visiting with attendees.

As I reflect on the weekend, and the awful weather, over 95 above all day on Saturday and albeit much needed, RAIN all day on Sunday, I was truly blessed to spend time with these authors and Marge. Imagine if you can, spending hours with a family and breast cancer survivor, a Holocaust survivor, and a survivor of ethnic cleansing, an under-reported historical tragedy, all of whom are women and authors willing to share their journey in the hope their survival will inspire others to fight the hard fight and never, ever give up hope and faith in God! Amazing. I have again been truly blessed because I chose to share my story in a book about our journey with my Dad and Mom.

I sincerely hope you’ll find their books and take time to read them all as soon as possible. They are:”Trapped In Hitler’s Hell” by Anita Dittman with Jan Markell; “The Will to Live” and “Silent No More” by Erica Vora and “The Chosen One by Jeanne Kremers.  They are all available at Good Books in Little Falls, MN or at their respective websites and Amazon.com along with my book of course.

As I participate in these types of events, which are not specific to an audience wanting to learn more are enduring the challenges of Alzheimer’s Disease, I am always curious about the attendees who cringe when they realize my book is about “Alzheimer’s”. I hear expressions like, “I don’t want to know about that” or ” I’m not affected by that”  or something similar. Trust me, if I had a choice I would like nothing better than to never had the need to learn about Alzheimer’s Disease much less travel the journey. Having said that, the “Journey” has brought me to places and people I never would have experienced which and whom have greatly enhanced my life.

So for those who never want to know about Alzheimer’s Disease I can only say, “Thank God you’ve never had to and I pray you never will; In the meantime, if you’re ever curious visit my website and know that I’m available to answer any questions you may have, if I can, based on my experiences”.

May God Bless you all every day. Lj

Busy Busy Busy

I’ve been working with a few other colleagues/friends and family members on an extension to this project. It’s very exciting! As we continue this journey we continue to find new avenues to help and be helped. The least of which is the development stages of the creation of “Paladin – Memory Advocacy Packet for Families– What I can’t do – We Can do”.

While in the very early stages, I wanted to blog to let you know why I’ve not blogged as much as I’d like to lately. I’ll continue to blog as I create a page here for updates with regard to “Paladin” and I’ll use FB and Twitter to the degree I’m literate in social networking, which is much improved since first starting this mission but still a very limited option for me.

Please stay in touch and post as often as you’d like, I do check in frequently even if I don’t always post.  Thanks so much for your support. LJ

GUEST POST

My thanks to Molly Clarke for this posting which I believe, based on my contact with many people on this journey, will be very helpful. LJ

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Alzheimer’s Disease and Social Security Disability Benefits

Molly Clarke is the Social Media Coordinator for Social Security Disability Help and regularly contributes to the Social Security Disability Help blog. Molly can be reached by email at mac@ssd-help.org.

Caring for an individual with Alzheimer’s disease can impact every part of a person’s life. While it is relatively well known that caregiving can be stressful at times, many people don’t understand the financial impact of caring for another person. Whether the person you are caring for is a parent, sibling, or distant relative, it is likely that you want what is best for him or her. Without financial stability, this can be quite difficult to do.

If you are caring for an individual with Alzheimer’s disease and can no longer support their needs, you may be able to qualify for Social Security Disability (SSD) benefits on his or her behalf. Before starting the SSD process it is best to be thoroughly prepared. The following information will shed some light on the process and the medical evidence you will need to provide to the SSA.

Disability Benefits

There are two types of disability benefits that a person may qualify for with Alzheimer’s disease. These include Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits. Your loved one may qualify for one or both types of benefits because they each have different eligibility requirements.

To qualify for benefits from either program, the person you care for must meet several basic criteria, which together, form the SSA’s definition of disability. These criteria are listed below:

The applicant must have a condition that prevents him or her from holding any type of job.

The applicant must have a condition that has lasted (or is expected to last) at least 12 months or result in death.

 SSDI Technical Eligibility Criteria

Social Security Disability Insurance is a long-term disability insurance program that is operated by the federal government and offers benefits to disabled workers and their dependent family members. Funding for SSDI is provided by the Social Security taxes that most workers pay into the system.

In order to qualify for SSDI benefits, applicants are required to have a certain number of “work credits”. Work credits are used by the SSA to measure a person’s work history and the amount of taxes that they have contributed to the program.  Exact work credit requirements vary depending on age. The general rule of thumb is that applicants must have worked five out of the past ten years in order to qualify.

It is important to note here that if your loved one has Alzheimer’s disease and is 65 or older, they will not qualify for SSDI. Instead, he or she will qualify for retirement benefits.

SSI Technical Eligibility Criteria

Supplemental Security Income benefits are distributed on a by-need basis to elderly or disabled individuals with very little income. To qualify, applicants must meet very strict financial limitations. As of 2013, an applicant’s household income cannot exceed $710 per month if they are an individual or $1,060 per month if a couple. Assets must also not exceed $2,000 as an individual or $3,000 as a couple. If the person you care for lives with you, a portion of your income may be considered as well. If your loved one for qualifies for SSDI but still falls short of these income and asset thresholds, they may qualify for SSI in addition to SSDI.

Alzheimer’s Disease and the Social Security Blue Book

In addition to meeting the previously mentioned requirements, the person in your care will also have to meet certain medical requirements. These requirements can be found in the SSA’s blue book—or guidebook of disabling conditions.

If the applicant is under the age of 65—which, as mentioned, is an SSDI requirement—they are considered to have early onset Alzheimer’s and will qualify for disability benefits under Social Security’s Compassionate Allowances program. The Compassionate Allowances program allows applicants with severely debilitating conditions to qualify for benefits in as little as two weeks.

According to the SSA’s blue book, an applicant with early onset Alzheimer’s disease must provide medical evidence of the following:

Progressive dementia

Inability to perform activities of daily living

Standardized dementia testing with a CDR score of 1 or an MMSE score of 24.

It is important that you gather all relevant medical documentation pertaining to your loved one’s Alzheimer’s and the limitations that it causes. Without medical documentation, the claim may be delayed or even denied.

 Applying for Social Security Disability Benefits

You can apply for SSD benefits on behalf of another person online (http://www.ssa.gov/pgm/disability.htm) or at a local Social Security office. When you apply, you will be asked to fill out a number of forms including the Adult Disability Report and the actual disability application. Make sure that you answer any questions with as much detail as possible. More detail will allow the SSA to see how impaired your loved one is and will make their decision easier.

It is important that you realize that your application may be denied. If your claim is denied, you will have 60 days from the date of denial to appeal the decision. While this process can be overwhelming, disability benefits are often an essential lifeline for caregivers of loved ones with Alzheimer’s disease.

For more information about Social Security Disability benefits, visit Social Security Disability Help. (http://www.disability-benefits-help.org/blog)