What is it like to have dementia?

What's it like for Dad, I've often wondered. Is he frustrated, trapped in a body with a malfunctioning mind? Does he understand that he is deteriorating? Did he, at the beginning?

Would I know, at the beginning, if I were to develop Alzheimer's? I don't want to suffer with a dementia; could I create a way out for myself now, in the event I lose my mind later?

That was one of the main character's thoughts in Lisa Genova's heartbreaking/inspiring/terrifying novel, "Still Alice." A neuroscientist, Alice Howland develops early-onset Alzheimer's disease. (The paperback, published by Pocket Books, sells for $15.)

It's a compelling question: What is it like to have dementia?

So when I got an email from WebMD with that subject line, I had to read more.

Writer R. Morgan Griffin does a good job of explaining how caregivers help themselves, and their loved one, by understanding what the disease is like for the person who has it. An excerpt:

Some people think of memory loss superficially, as merely forgetting words or names. But it’s much more profound than that. Everything we do is premised on memory. When you walk into the kitchen to make dinner, your actions are almost unconscious. You grab food from the fridge, turn on the oven, take out plates and silverware – your memories are a foundation, and they give you a context for what you’re supposed to do in a given situation.

For a person with dementia, that context is ripped away. A woman with Alzheimer’s disease may walk into a kitchen and have no idea why she’s there or what she’s supposed to be doing. She might still be able to make dinner – especially in the early stages of the disease – but it’s a struggle. Each step has to be reasoned out and thought through. That’s why people with dementia tend to act more slowly than they once did.

The rest of the article is full of additional observations and explanations. Read it, and you'll find yourself saying, "so that's why my Mom does..." or "that explains why Dad did..."

Understanding dementia from a patient's point of view can make caregiving less frustrating. Knowing the patient personally is important, too.

We fretted over how to convince Dad that he needed to live in a memory care facility. Stubborn and independent, he was unlikely to admit he needed help, that it was for his safety. Tell him he had dementia and he'd appear quietly stunned--and you could not tell if he was processing the information, angry about it, or considering what those words meant. But he was still Dad.

The facility we were considering, Silverado, had a calendar of events planned for the residents, and one of the outings was to the State Fair of Texas. Since Dad had run the midway there for years, we figured that would be an ideal day for Dad to visit Silverado. He knew Silverado was for people with various types of dementia, and he knew the residents would need help getting around the fairgrounds. He found a purpose in acting as their guide. Soon he began believing Silverado was where he worked--he returned home in the evenings to sleep at first--and the staff kept him busy stuffing envelopes and such. When I'd call, he answered the phone as he always had answered his work phone: "Cleveland Smith, may I help you?"

It broke my heart. But, I recognized Dad had found a way to cope with his diagnosis. So had we. We joined reality with his reality, and together we were understanding what it is like to have dementia.

Read more from Amber Smith, "What would Dad say about this blog?"

Read Bruce Bane's blog about living with dementia: "He Reminds me of my Dad."

Read the WebMD story, "What is it like to have dementia?"

Lynn Lazarus Serper brings 'Serper Method' to Syracuse

Lynn Lazarus Serper--involved in groundbreaking work on learning programs to maintain and improve brain health and vitality--presents "The Serper Method" with communication strategies and learning activities at a conference in Syracuse June 10 and 11.

Her appearance is part of Upstate Medical University's 22nd annual Alzheimer's Conference, designed for families, caregivers and health care professionals who care for people with Alzheimer's or other forms of dementia.

Registration for both days is $95 for caregivers, $115 for health care professionals and $140 for doctors.

'I'm Still Here' tells us Alzheimer's does not mean life ends

It's the disease we dread the most, isn't it? We fear how Alzheimer's wreaks minds, steals memories and personalities. We don't want to be condemned to wandering in a fog. We translate a diagnosis to mean "the end."

But in fact, many people live 10 or 15 years with the disease. A diagnosis is just the beginning, and author John Zeisel argues that Alzheimer's is not the end of the world. His book, "I'm Still Here" (Penguin, $24.95) explains how to connect with someone who has dementia. Music, art, facial expressions and touch are abilities that don't diminish with time and can be the foundation for connection.

More than 5 million Americans are living with Alzheimer's (which represents from 60 to 80 percent of all dementias), and those numbers are set to explode as the Baby Boomers begin celebrating their 65th birthdays next year. So, the practical advice Zeisel offers is assisting a growing number of caregivers.

Though it makes perfect sense, how many of us think to introduce ourselves when greeting a loved one with Alzheimer's? This is done by sitting down next to the person, holding their hand, looking in their eye and saying, 'Hi, Mom, I'm your daughter Miriam, and I love talking to you about Oakland, where you were born.' This is in place of the "test" question, 'do you know who I am?' which may frustrate those we care about and will most certainly crush our spirits when we are reminded that, no, they don't.

Zeisel, who has a background in sociology and architecture, explains in his book how to build memory cues into living environments. He gives advice on preparing for visits with someone who has lost the knack for conversation. And, he reminds us of the importance of telling people with Alzheimer's that we love them.

"Alzheimer's is not the end of the world"
article from The Guardian

Nine tips on caring for your aging parents

Lots of Baby Boomers transition into caring for aging parents. First you're doing their shopping. Then taking them to medical appointments. Soon, making sure bills get paid on time.

Personal finance expert Eric Tyson says "the best way to deal with this important life transition is to plan ahead for the impact the change will have on your parents, while not allowing these changes to take away from your own quality of life."

Easier said than done, right?

Tyson's new book, written with Bob Carlson, includes suggestions about how to help--without turning efforts into a depressing, full-time endeavor. They include:

1. Leverage other's experiences. Find others who have dealt with similar issues, through outreach coordinators or social workers at local senior centers. You may even discover support groups that are helpful. Also, speak with people you already know. You may be surprised how many friends and family members have been down the same road.

2. Ask for professional help. Tap social service agencies, which exist at all levels of government and are rarely advertised.

3. Invest in their health. Be proactive rather than having to react after a problem becomes evident. Focus on a concern that their health be the best it can be.

4. Get your parents' affairs in order. Contemplating one's mortality usually isn't enjoyable, but it's important to have a completed will and estate plan. "Although you may not have the slightest selfish interest in inheriting some of their money and assets, other family members may have a different take on your intentions," Tyson explains. "Be sensitive to their feelings and privacy regarding their finances and what happens with their estate upon passing."

5. Examine housing and medical care options. Be careful not to leap to conclusions about what is best for the situation.

6. Use caregiver agreements. In many families, younger members help care for older members for at least a brief period. Families should pay attention to the details and rules regarding this care partly to ensure they receive maximum benefits and partly so each member will feel he or she is treated fairly.

7. Separate living spaces if parents are moving in. Many families find that this will help set boundaries and cause less interruption of family time by the care needs of an elderly relative.

8. Take care of your family. It's easy to feel overwhelmed, between work and other commitments and caring for an elderly parent. But don't forget your immediate family, your spouse and children.

9. Take care of yourself. The best givers often tend to really neglect their own needs and their own health.

A dilemma for caregivers: How to occupy the time

My father's move to a memory care facility was much harder on us than it was on him. When he came to Silverado, he believed he ran the place. They placed him in an "office" to stuff envelopes, had him "lead" tours, allowed him to greet visitors and collect the mail from the mailbox at the street.

I fretted about how he would spend his days, and what I could do to help add some purpose.

A friend told me what helped her mom: a box (or cannister) full of memories written on paper. So I cut card stock into rectangles and typed memory after memory, a sentence or two each, and invited friends and relatives to do the same. Slowly we filled a plastic box the size of a shoe box with which--for a while--my Dad would not part. Of course they were all good memories. That was important. But to him, each time he read them, he relived those good times.

My Dad loved reading, but I knew he was no longer able to devour the Thomas Jefferson biographies he used to love. I struggled to find short stories that would hold his interest. I resorted to big coffee table books with photos he might like, and the "I Spy" series of children's books, (hoping he would not realize they were children's books.)

I'd send him letters and/or packages every other day, since I knew he would be getting the mail. But beyond that, from my distance, I was at a loss. Cynthia Green wrote recently in The New York Times' "The New Old Age" column about some ideas, and collected several from readers. Here are 10 of my favorite:

* Adapt a lifelong hobby--for instance, someone who loved cooking could help mash apples for applesauce; a gardener may work with planting small pots.

* Capitalize on interests--a golfer may enjoy watching videos of the game; a gardener may enjoy coffee table books featuring flowers, or even leafing through garden catalogs.

* Scrabble! Verbal skills may diminish, but this game is worth a try.

* Sort through a collection of buttons. They may tell stories about the clothing buttons came from, or comment on each button's characteristics.

* Jigsaw puzzles, the ones that are not too complicated. (You can have them made from a favorite photograph.)

* Sing the first line of a familiar song. They may sing the one that comes after.

* Create a photo book and/or photo DVD that they can look at and share with other residents whenever they want.

* Rhyming games. Have them come up with words that rhyme with a word you choose.

* Watch the cars go by, and start conversations based on what goes past.

* Painting. Potentially messy, but good way to stimulate creativity.

3 important steps for adult children caring for parents, from Dr. Mom

Spouse have dementia? Your risk increases

Married adults who have a spouse with dementia are much more likely themselves to develop dementia, says a study in the Journal of the American Geriatrics Society.

Why? Researchers theorize it could be because of the stress of being a caregiver or something about the shared environment of the couple.

Caregivers of people with dementia provide more assistance and report more personal sacrifices and stress than those who care for the physically-impaired elderly without dementia. Research has shown how that puts caregivers at risk for health problems and depression--but until now hadn't looked specifically at the risk for the caregiver developing dementia.

The study involved monitoring 1,221 married couples, who were intially symptom-free, for up to 12 years for onset of dementia in husbands, wives or both. The majority of individuals whose spouse developed dementia did not develop dementia themselves. However, a spouse's development of dementia meant the caregiving spouse had a six times increased risk of developing the same disease.

Researchers are not sure what factors make someone more vulnerable.

"Given the significant public health concern of Alzheimer's disease and other dementias, and the upcoming shift in population age composition, continued research into the causes of dementia is urgent," one of the researchers, Maria Norton of Utah State University, told HealthDay.

The Salt Lake Tribune story.

The Time Magazine story.

Letting go of a father; proposing unity, assistance for caregivers

"As I walked the streets, did interviews, conducted business, I took to wondering which of the middle-aged people I encountered were quietly struggling to cope with their own crisis. How many of them felt utterly out of their depth? How many others, having come through an ordeal, had experience that they had no ready opportunity to share? According to the National Alliance for Caregiving, about 50 million Americans are providing some care for an adult family member. I was swimming in an invisidle crowd of caregivers every day, but, like streams of photons, we passed through each other."

This passage comes from The Atlantic writer Jonathan Rauch in a thought-provoking piece with which dementia caregivers surely can relate. It's called "Letting Go of My Father."

It tells his personal story. It also shows a parallel between today's invisible caregivers and the endemic lonliness and boredom among yesterday's housewives that Betty Friedan described as "the problem that has no name."

Anyway, Rauch's essay is a lengthy narrative, what we in journalism used to call "a good read," and it's more than worthwhile, especially if you are a caregiver.

Watch out: Stress of caregiving can lead to shingles

My friend has shingles.

She is the primary caregiver to a mother who has Alzheimer's disease. Does the stress of that role make her more prone to shingles?

Probably.

A weakened immune system is one risk factor.

It's not proven, but "most researchers believe that when the body's immune response, which normally keeps the virus in check, is temporarily weakened, the shackles on the virus are somehow removed, allowing it to multiply and travel along nerve fibers toward the skin on the surface of the body," says HealthCentral. "The fact that the disease occurs more often in people over the age of 50 supports this theory, as the immune response is believed to wane with age. Other factors that can also trigger a zoster attack in healthy people include trauma or stress."

Not only can stress lead to shingles, if you get shingles, stress can make it even worse, making the itching, burning, painful rash seem worse--and lengthening your recovery time, reports Everyday Health.

Learn more about shingles, from eMedicine.com

Hallucinations? Or deteriorating vision?

What may seem like hallucinations in people with dementia may, in fact, be symptoms of deteriorating vision.

Howard Solomons, PhD, writes in this "Vision and Dementia" paper from 2005 about the way our eyes deteriorate as we age. People with Alzheimer's or dementia face those issues, plus they may face disturbances that originate in their brains, rather than their eyes. "That is, their problem can be having difficulty perceiving what they see rather than how sharply they see it," Solomons describes. "Problems most commonly occur in four areas – motion, depth, colour and contrast. Visual hallucinations have been reported to increase with loss of visual acuity in some Alzheimer’s patients."

It's something of which to be aware.

Teepa Snow, from the video above, trains caregivers and family members of dementia patients. Check out her Web site.