Caregiver Study – Seeking Participants

07 Saturday Dec 2013

Posted by Ann Napoletan in Caregivers, Life After Caregiving, Research, Sandwich Generation

Tags

alzheimers, caregiver, caregiving, dementia, research study

Posting for Laura Lewis, a doctoral student seeking current and former caregivers to participate in a research study she is conducting online. Details below.

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Hey everyone, I am not currently a caregiver, but I am an oncology nurse and a graduate nursing student studying dementia after my experiences taking care of my grandmother at the end of her life. I am looking for help with a study I am doing for my dissertation and I am posting the information here…

Volunteers wanted for a Nursing research study on caregiving for a loved one at the end of life!

My name is Laura Foran Lewis and I am a doctoral student in the School of Nursing at the University of Connecticut. I am looking for individuals who may be willing to participate in a research study about family caregivers. The purpose of this research study is to explore the experience of caregiving for a loved one with dementia (including Alzheimer’s disease) at the end of life.

I am looking for individuals who took care of someone with dementia who passed away in the last 10 years. You may have cared for them at home, or they may have been in assisted living or in a nursing home. Participation is entirely online and includes answering a few questions about your experience as a caregiver. It can take as long or short as you like, depending on how much you decide to share.

To find out more about this study or to participate, please see the study website: http://www.caregiverstudy.weebly.com/ or email me directly at laura.foran@uconn.edu.

Thank you for your consideration!
Laura Lewis, RN, MSN, Student Investigator
Principal Investigator: Cheryl Beck, DNSc, CNM, FAAN

…Also please SHARE if you are willing! I am really passionate about helping those with dementia and their families, and your participation will help me make this study meaningful!! Thank you!!

Alzheimer’s Prevention Registry: Who, What, When, & How?

23 Saturday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Helpful Resources, Prevention, Research

≈ 2 Comments

Tags

alzheimers, Alzheimers advocacy, alzheimers prevention initiative, alzheimers prevention registry, alzheimers research, banner alzheimers institute, dementia

I recently had the pleasure of participating in a webinar presented by the Banner Alzheimer’s Institute (BAI) in Phoenix. The hour left me feeling energized and more hopeful than ever that we can beat this disease. Without question, there are some great things happening in the world of research, but we have to help.

What Is the Alzheimer’s Prevention Initiative?

BAI is a non-profit organization dedicated to groundbreaking research, and the Alzheimer’s Prevention Initiative is one of their most crucial projects.

Jessica Langbaum, Ph.D., Principal Scientist and Associate Director of the Initiative, is passionate about this endeavor, and for good reason. Almost two years ago, she lost her grandfather – formerly a successful engineer – to Alzheimer’s, and she’s committed to doing whatever she can to save other families from similar heartbreak.

The most essential component of the Initiative is the Alzheimer’s Prevention Registry, which was created to connect like-minded individuals interested in stopping this horrible disease in its tracks.

Members are kept apprised of the very latest news and information in the world of dementia research, but that’s just part of the mission. The Registry also seeks to create an unprecedented pool of potential study participants for prevention research.

How Does It Work?

It’s important to note that joining the Alzheimer’s Prevention Registry does not obligate you to participate in research. What it does do is arm you with the knowledge you need to be a more effective advocate, while providing information on the latest study opportunities in your own community. From there, the decision is entirely your own.

As you might expect, a common question is, “What might a typical study look like?”

Prevention studies take various forms. Participating can be as quick and easy as completing an online survey in the comfort of your living room or visiting a nearby research center once or twice.

Of course there are also larger randomized clinical trials. In these longer-term studies, participants are assigned to either an experimental group or a control group and are observed over time. Some of these projects involve investigational drugs while others focus on things like healthy lifestyle choices.

Why Does It Matter?

Over 5.2 million Americans are currently affected by Alzheimer’s or related dementias – a number that’s expected to triple by 2050. The economic impact is staggering. Consider this. The disease costs our country $203 billion annually and that will grow to $1.2 trillion by 2050 unless we find a way to slow or stop the progression.

If we stay on the current trajectory, by 2050, every Medicare and Medicaid dollar could be spent on dementia with nothing left over.

The Alzheimer’s Prevention Registry has set an ambitious goal of enrolling 250,000 healthy members, 100,000 of those by the end of 2013. Individuals age 18 and over of all races and ethnicities are welcome, whether or not they have a family history.

How Can I Get Involved?

According to Dr. Langbaum, as many as 85% of drug trials face delays because they are unable to attract or retain a sufficient number of participants. Quite simply, too few people are volunteering due to fear, concerns about time commitment, or just because they aren’t sure where to start.

The fact is, most Alzheimer’s studies never get off the ground because they fail to meet recruitment goals. The good news is we can all be a part of the solution by joining the Alzheimer’s Prevention Registry today, and asking our friends to do the same!

Remember, becoming a member opens the door to opportunities, but in no way obligates you to take part in any research.

Every person who joins the Registry brings us one step closer to that breakthrough discovery! Visit the website to sign up today!

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The Banner Alzheimer’s Institute is a non-profit organization; however, I was compensated for this post. I’ve been a member of the Registry since May 2013.

Caregiving 101: Outstanding Online Resources

17 Sunday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Helpful Resources, November-National ALZ Awareness Month, Research, Support system, Tips, USAgainstAlzheimer's, Washington

≈ 8 Comments

Tags

alzheimers, alzheimers resources, caregiver resources, caregiving, dementia

November marks both National Alzheimer’s Awareness Month and National Family Caregivers’ Month, and what better time to highlight some helpful online resources.

When my mom developed Alzheimer’s, I knew nothing – or less than nothing if that’s possible! It was truly baptism by fire, and I wish I’d had access to the plethora of information out there today.

Even just connecting with others who were at various stages of the journey would have been a godsend. Ironically, it’s been since Mom’s passing that I’ve discovered a lot of these resources, which is why it’s important to me to let other caregivers know they’re available.

Alzheimer’s Association

The Alzheimer’s Association offers several excellent tools including:

The Alzheimer’s and Dementia Caregiver Center is a portal providing a window into a variety of tools and resources. There you’ll find help on behaviors, communication, legal and financial matters, and care options, as well as tips on driving and safety issues, activities for your loved one, and respite care.

Community Resource Finder will help you locate resources, services, and programs right in your own community. It’s as simple as entering your zip code and choosing from a list of over 20 categories including elder care attorneys, assisted living communities, area agencies on aging, home health care, and many more.

ALZConnected is a virtual community of caregivers. The site is divided into two sections; message boards let members connect with other Alzheimer’s families on topics such as caring for a spouse or partner, clinical trials, and early onset, among others. The solutions pages allow users to pose questions to the community, peruse existing questions and answers by topic, or respond to questions posted by other members.

Alzheimer’s Navigator guides you through the process of developing an action plan tailored to your own unique situation.

Virtual Library provides access to thousands of books, journals, and other media, available to borrow.

Facebook

Did you know there are many Alzheimer’s and dementia virtual communities on Facebook? These groups provide a great way to connect with other caregivers who truly understand what you’re going through. In addition to camaraderie and support, they provide a jumping off point for finding tons of other resources. A few of my favorites FB communities include:

Other Awesome Resources

Bob DeMarco’s Alzheimer’s Reading Room is one of most well-received and heavily visited Alzheimer’s blogs on the web. Bob was his mother’s primary caregiver until her passing, so he brings tons of personal experience to his writing.

His site is also a great resource for the latest news and developments in the world of Alzheimer’s. The Alzheimer’s Reading Room is a wonderful source of practical advice for those dealing with Alzheimer’s, and I suspect that once you start reading, you won’t be able to stop.

I also recommend checking out Alzheimer’s Speaks founded by highly sought after dementia expert Lori La Bey whose mother has struggled with Alzheimer’s for more than 30 years. Frustration with lack of information and resources led Lori to develop the site as a way to help other caregivers.

Alzheimer’s Speaks is currently recognized as the number one online influencer for Alzheimer’s, and it offers an incredible wealth of information. On the site, you’ll find tools, resources, articles, and much more including links to the Dementia Chats webinar series and the extremely informative Alzheimer’s Speaks Radio.

Finally, IAM-Care is a new site billed as the first comprehensive caregiving platform for Alzheimer’s and dementia. It is currently in beta test but founders invite anyone interested to join, take a look around, and provide feedback.

At IAM-Care, the vision is to offer a platform that combines social networking with access to expert knowledge. Perhaps most importantly the site provides secure, personalized healthcare tools to help every caregiver keep vital information organized and at their fingertips.

Get Involved!

If you’re looking for a way to take action and become an advocate, I suggest checking out USAgainstAlzheimer’s. Founded by George and Trish Vradenburg, this grassroots organization is serious about finding a cure by 2020. Take a look at part of their mission statement:

We are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020

USAgainstAlzheimer’s will provide you with the latest news from Washington as well as the tools you need to make your voice heard.

Another powerful way to make an impact is to join the Alzheimer’s Prevention Registry, an offshoot of the Banner Alzheimer’s Institute in Phoenix, Arizona. The registry provides an easy way to stay connected with Alzheimer’s prevention studies taking place in your own community.

The organization’s goal is to register 250,000 members by 2015, bringing together those who believe that the time to end Alzheimer’s is NOW. It only takes a few minutes to register; membership is free and does not obligate you to participate in any research.

Being part of the Prevention Registry will give you access to the very latest research news, arming you with the information you need to be a strong advocate.

Share Your Favorites

What are some of your favorite resources – online or otherwise? Please leave a comment and share your thoughts with other readers. If you found something helpful, it’s likely that someone else can benefit from it too!

Be sure to also check out my Helpful Resources, Reading List, Recommended Blogs, and News & Information pages, and stop back periodically for updates. It is my sincere hope that you or someone you know will find this information helpful.