Beyond Dementia Caregiving

With this post I introduce a necessary change in the purpose and goals for the Caregiver Chronicles blog. We began this project to focus on Alzheimer's Disease and other dementias and have been gratified to see the participation and comments of many people dealing with these diseases either as patients or their caregivers.  

We also wanted to introduce you to my book about caregiver burnout: "Dementia Diary, A Caregivers Journal." This has been very successful and continues to provide support to dementia caregivers worldwide. It may still be purchased by clicking on any of the links on the right.

The change we are reporting today is both timely and appropriate. It is one that many of our friends have asked for. Until now, discussions have focused on caregiver burnout, treatment developments, research for prevention or cures, and similar topics. We've been told that these have offered valuable hope and knowledge to readers.  Articles on these topics, of course, will continue to be welcome.

However, we are expanding our mission. Readers will have already noticed articles about aging and the elderly, Medicare and so-called entitlements, funeral pre-need planning, long term care insurance, and other topics only loosely related to our original purpose. These have been well received.

So, from now on, all topics of caring and caregiving, issues concerning physical and emotional health, medical care, and spiritual well-being, or anything of deep concern to you as a caregiver or care receiver, will be highlighted in these posts.

Let's hear from you.

Robert Tell, Author
Dementia Diary, A Caregiver's Journal

What's the One Thing You Never Want To Forget?

Samantha Kennedy has left the following new comment on my post "Why All the Fuss about Medicare Advantage?"

 "Every 69 seconds someone develops Alzheimer’s disease. Please share this video and one thing that you never want to forget to help end Alzheimer’s. http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded "

So here's my "one thing": One thing I never want to forget is the tight, loving, extended family I enjoyed as a child and young man. The people may mostly be gone now, but not their memories.

What's yours?

Robert Tell, Author
Dementia Diary, A Caregiver's Journal

Why All the Fuss about Medicare Advantage?

 Are you caring for someone that gets his or her medical benefits through a Medicare Advantage plan? Or perhaps you are in one yourself.  Or are you just confused by all the competing political rhetoric in the media about this? Why all the fuss?

Lately, the political landscape has been inundated with partisan headlines stating that the  government will soon be taking Medicare away from our seniors. Nonsense!

Ads, press releases, and news quotes from certain politicians are designed to create fear and an emotional reaction…and if they were telling the truth, that would be OK. But the messages are full of distortions and innuendo and are not to be taken seriously.

First of all, the public needs to understand that Medicare Advantage was created as a back door approach to privatizing Medicare. It should be known as the “Private Option.” Its long-range purpose is to destroy traditional Medicare, something special interests have been trying to do since Medicare was established in 1965.

Traditional Medicare is one of the most successful government programs ever created. It has had decades of proven success in protecting the elderly from poverty caused by hefty medical expenses. One must think twice (maybe three times) before tampering with such a program.

Yet this is what Medicare Advantage does. It replaces traditional Medicare with a variety of private insurance products. It is a remake of a previous such attempt known as Medicare + Choice, a program that failed when the private insurers involved decided it wasn’t profitable enough and dumped thousands of aging enrollees into the marketplace. This could happen again.

Yet, on the surface, Medicare Advantage looks like a better deal to many seniors. It is designed to do so by offering more benefits for a lower premium. What can possibly be wrong with that? Well, let’s look more closely. There are no free lunches. Never have been and never will be.

How can beneficiaries get more by spending less? Here’s how! Government is subsidizing the premiums. Oh! So where is the money coming from to do this? Simple! It comes from the higher premiums people on regular Medicare have to pay so Advantage customers can enjoy these benefits. Not cool!

It gets worse. We also know that for every dollar of additional premium that insurance companies get through Uncle Sam, only about 14 cents goes to benefits and 86 cents goes to additional insurance company profits.  Medicare Advantage is a boondoggle to the insurance companies!

You don’t believe me? Then take a look at this Washington Post article:    Is Medicare Advantage Worth It?

So the screams you hear about the pain of ending some Medicare Advantage programs is coming from protectors of insurance company profits disguised as concern for elderly patients. Crocodile tears if ever there were any.

Yes, it’s true that some Medicare Advantage beneficiaries might have to switch to traditional Medicare. The result: they’ll have to pay a bit more to get a little less. But the rest of the Medicare community, the majority of older adults, would see their premiums come down.

Remember all of this when next you hear the scream machine trying to get you worked up about this issue. 

Finally - a book to help with Caregiver Burnout

I've been told many times by reader's of my book, "Dementia-Diary, A Caregiver's Journal" that this blog doesn't make clear enough the way for interested folks to buy a copy. If you will forgive a bit of "shameless promotion" I'd like to correct that problem now.

You may be wondering why my readers have gone to the trouble of contacting me about this. They say it's because Dementia Diary has helped them to deal with the emotional realities of caregiving and they think it should be read by all people dealing with this issue—especially by anyone facing "Caregiver Burnout," a dreadful condition that is ultimately experienced by most caregivers.

So here's how to get the book — Click on any of the links in the new column on the right:

I  only ask one thing. If you do read the book, please let me know in a comment on this blog whether you like it enough to recommend it to others caring for a loved one with Alzheimer's or another dementia. 

Many thanks and best wishes,

Robert Tell, Author

Can Dementia Patients Enjoy Art Museums?

Art museums all over the Country are starting programs for people with Alzheimer's and other dementia's. Why would they do that? Can someone with dementia appreciate art as displayed in large public museums. The answer is a resounding "Yes!"

One such program was recently introduced at the Detroit Institute of Arts. It is called "Meet Me at the DIA." Here are some quotes from it's website:

 "People with Alzheimer’s and other forms of dementia are often isolated and have few opportunities to interact socially or remain involved in the community,” said Jennifer Czajkowski, executive director of the DIA’s Learning and Interpretation department. “This program provides a safe, inspiring environment for social engagement and intellectual stimulation, where participants will feel welcome and comfortable. All participants, including caregivers, are encouraged to contribute to the discussions, which are based on the observations and connections made by the group. Each person will receive a small print of a DIA artwork so conversations can be continued after leaving the museum."

 “Meet Me at the DIA,” is modeled after a successful program at the Museum of Modern Art in New York, and is intended to enhance Alzheimer’s patients’ quality of life through mental stimulation, communication, personal growth and social engagement. Similar programs have been shown to increase the mood and self-esteem of dementia patients and their caregivers immediately following their visit and for days afterward."

A quick search reveals the following partial list of art appreciation programs for people with dementia:

Detroit Institute of Art
Museum of Modern Art
Frye Art Museum
Metropolitan Museum of Art
Michigan State University Kresge Art Museum
Carnegie Museum
Rubin Museum of Art
Milwaukee Public Museum
Minneapolis Institute of Art

If your community is not listed, I recommend checking with the art museum in your town. If a program does not yet exist in your community, feel free to quote this post in persuading decision makers to establish this worthwhile experience for people with dementia.

 Bob Tell, Author
Dementia Diary, A Caregiver's Journal

Cognitive Therapy For People With Dementia

In March, 2010, I wrote a piece entitled "Can Painting Help Dementia Sufferers?" I was so impressed with this concept that I suggested to the person in charge of art for the library in Boynton Beach, Florida, that, considering the demographics in the area, she consider starting a program like this. Maybe it was budget considerations, but I never heard from her.

Now, along comes Cognitive Dynamics a website devoted to what they call "Bringing Art To Life." In my opinion, they are doing exciting work showing the potential of people with dementia to enjoy an enhanced quality of life and to find ways to express themselves that are not word-dependent.

See their video, "Bringing Art to Life in Beverly Hills" as well as their website and I bet you'll agree with me that they are onto something fabulous. And it's not just art therapy. Their program includes music, drama and poetry therapy as well as art.

They describe their mission as:"To improve the quality of life of patients with cognitive disorders (such as Alzheimer’s disease) and their caregivers through education, research, and support of innovative care models which promote human dignity, especially therapies employing the expressive arts."

So I suggest becoming familiar with the work of Daniel Potts, a Neurologist with a special interest in cognitive enhancement for dementia patients, and Ellen Woodward Potts, Co-author of A Pocket Guide for the Alzheimer's Caregiver, Managing Partner at Dementia Dynamics, LLC and instructor at the University of Alabama. These folks are shining a much needed light onto the darkness of our current knowledge of dementia.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
Paperback: http://dementia-diary.com
e-book: http://www.smashwords.com/books/view/9565

ENCORE: OOPS, I FORGOT YOUR NAME!

This is an encore article originally published in January, 2009. The more we learn about memory and cognition, the more relevant this article becomes. See what you think–

I'll never forget the shock I felt when I first heard the following comment from a medical professional: "It's not about memory, it's about cognition."

He was talking about dementia and what, in his opinion, is a popular misconception that leads to a lot of unnecessary worry by people who are suddenly forgetting names and where they placed things like the car keys.

What did he mean, "it's not about memory?" After all, it was obvious to me that it was indeed about memory. I was closely monitoring my mother's symptoms as she sank deeper and deeper into the opaque fog of her multi-infarct dementia. She was forgetful about everything, including exactly who I was. I mean, the nurse asked her during one of my visits:

"Look who's here, Millie. Do you know who this is?"

Mom smiled and said, "Of course I do. He's my grandson."

"No Mom," I said. "I'm your son."

"I knew that," she said, still smiling.

So wasn't that about memory? Of course it was. What the medical professional meant was that it's more complicated than that.

Most of us have heard the expert statement that if you forget where you put your car keys, you don't have to worry about dementia. But if you forget what the car keys are for, that's serious. That could be dementia. That's not just a memory problem (although memory is certainly part of the picture), that's cognition, which the dictionary defines as: "the act or process of knowing; perception."

It's subtle but it's real. Mom didn't just forget me. In fact, she remembered me. She just didn't know who I was.

This isn't just semantics. As we age, most of us develop retrieval problems where we can't instantly recall something or someone that should be very familiar to us. According to my medical professional, that's a normal memory issue far removed from dementia.

But it's still darned annoying, isn't it?

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
Paperback: http://www.dementia-diary.com
e-book: http://www.smashwords.com/books/view/9565