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

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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.

November: Alzheimer’s Awareness Month

03 Sunday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Facts & Figures, Helpful Resources, November-National ALZ Awareness Month, Petition, Research, Ruminations, USAgainstAlzheimer's, Washington

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Alzheimers advocacy, alzheimers awareness, dementia awareness, national alzheimers awareness month

November is Alzheimer’s Awareness Month – a great time for everyone to help shine a spotlight on this impending national health crisis. It’s estimated that 5.3 million Americans are currently living with Alzheimer’s, and 4% of those cases qualify as younger onset, attacking people in their 30’s, 40’s, and 50’s.

The Facts

AD is the 6^th leading cause of death in the United States (5^th among those over age 65). It’s also the only one of the top 10 causes of American deaths that can’t be prevented, cured, or even slowed. Simply put, there are no survivors.

Between 2000 and 2010, Alzheimer’s deaths rose 68% while deaths from all other major diseases, including heart disease, cancer, stroke, and HIV, have dropped.

Big numbers? Well, consider this:

Within the next 12 years, there will be 7.2 million adults, age 65 and older, living with Alzheimer’s and other dementias.

Unless there is a major medical breakthrough, it’s projected that 13.8 million older Americans (age 65 and over) will have Alzheimer’s by 2050.

Cost of Care

The cost of care is astronomical and growing every day. Estimates indicate that this year alone, the direct costs of caring for those living with Alzheimer’s will total $203 billion. At the rate we’re going, without significant progress toward preventing or treating the disease, costs will rise to $1.2 trillion (in current dollars) by 2050.

Research Dollars

Research funding isn’t where it needs to be – not by a long shot. The National Institutes of Health spends over $6 billion/year on cancer research, over $4 billion/year on heart research, and over $3 billion/year on HIV/AIDS research. Less than $500 million/year is spent on Alzheimer’s – the disease that’s shaping up to be the health crisis of our generation.

Government can’t afford additional funding? Well, the alternative only exacerbates that situation. Should we reach the numbers mentioned above by 2050, we’re looking at a 500% increase in Medicare and Medicaid spending. Now who wants to talk about breaking the bank????

Facing the Fear and Raising Awareness

The fact is, there’s a generation of Alzheimer’s caregivers who are terrified about what the future may hold. I know because I’m one of them. Am I destined to follow in my mother’s footsteps? The thought of putting my daughter through that is – well, there’s no doubt – it’s my worst nightmare.

The time is NOW, not tomorrow, next week, or next year. Sign a petition, contact your lawmakers, support organizations like USAgainstAlzheimer’s and the Alzheimer’s Association, and TALK ABOUT IT every time an opportunity presents itself.

We need to get this issue out in the forefront and do everything we can to keep it there for as long as necessary, so that someday we won’t need an Alzheimer’s Awareness Month.

Source for statistics and graphs: http://www.alz.org

Just Another Manic Monday…(or something like that)

19 Monday Nov 2012

Posted by Ann Napoletan in Blogging, Caregivers.com, Mom, November-National ALZ Awareness Month, Orthostatic Hypotension, Pharma

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I realized today that the definition of “good day” has changed. It used to be that a day filled with fussing and restlessness was a “bad” day. Now I’d have to say that kind of day has officially moved into “good day” territory.

Another day of yelling, though settled slightly with lorazepam every six hours. As of 7pm, she had been awake since 1am and was still extremely restless and agitated. I had to work late tonight, so I didn’t get over there, but Jess saw her for awhile this afternoon. I am praying she will be able to get a full night of sleep tonight. She needs it so badly.

I need to make a decision on the blood pressure meds for tomorrow morning… still waiting for both docs to return messages I left today.

Today on Caregivers, I decided to stick with the theme of the week. Check out the post titled Caregivers: Navigating Uncharted Pharmacological Waters.

I’ll leave you with a little trivia…. did you know that President Ronald Reagan designated November as National Alzheimer’s Disease Awareness Month in 1983. At the time, fewer than 2 million Americans had Alzheimer’s; today, the number of people with the disease has soared to nearly 5.4 million. (Source: The Alzheimer’s Project)