What is it like to have dementia?

June 11, 2010

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

June 8, 2010

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.


Nine tips on caring for your aging parents

May 24, 2010

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.


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

May 11, 2010

Spouse have dementia? Your risk increases

May 6, 2010

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.


Vintage objects can soothe those with memory troubles

May 3, 2010


One muggy, hot summer day in San Antonio, my Dad wore a khaki jacket with a stitched Six Flags emblem on the breast. He would not remove that jacket, no matter that his face was red and sweat beads covered his forehead.

We were at Fiesta Texas, in typical blazing heat, and we couldn’t reason with him to peel down to the T-shirt he wore beneath. So we conspired to stand near a ride that splashed. If he got drenched–along with the rest of us, of course–surely Dad/Grandpa would remove the jacket. It worked.

We’ve joked about his attachment to that jacket ever since.

Recently, I’ve come across an explanation for why–maybe–Dad is so attached to his Six Flags jacket.

The health group Bupa Australia says it has evidence that providing famliar objects from the past can help settle dementia patients. The objects they’re talking about are clothes lines, laminated kitchen tables, vegetable gardens and other items that people of a certain generation may appreciate.

Don’t you bet certain music,
television shows and recipes
could have similar effects?

Maryann Curry, Bupa’s group director of nursing, said there was anecdotal evidence that providing familiar objects from the past did help to settle patients and the company was examining just how significant a benefit it could be, particularly for patients who tended to aggression and hostility.

Maryann Curry, the group’s director of nursing, told The Sydney Morning Herald that the pleasant experience might only last a minute or two, but the benefits in patient wellbeing lingered for some time until it was overridden by another sensory experience. “Their facial expression actually changes. We often see in their faces the joy of that moment. They are comfortable in that moment,” she told the publication.

For many American Baby Boomers, vintage objects may be the laminated kitchen tables and the clotheslines. For my Dad, that vintage object is his Six Flags jacket.


Watch out: Stress of caregiving can lead to shingles

April 28, 2010

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


Modern Love: ‘Sweetest at the End’ essay in The New York Times

April 11, 2010

Of course Elinor Lipman’s essay in The New York Times’ “Modern Love” column caught my eye. Some promotional type summarized: “Dementia turns an elegant man into a gregarious child.”

That elegant man was her husband, Bob, whom she was married to for 30-plus years. Bob, who was a radiologist. Bob, who was 57 when his wife and grown son noticed something was amiss.

I read to where she described “the cruel disease that felled him was frontotemporal lobe dementia–rare, untreatable and fatal, and one that often turns its victims into violent, angry and inappropriate versions of their normal selves.”

My Dad has become those things. Sadly. Predictably. Just like the neurologist who saw him in October 2008 said he would. Violent at times, angry at times, inappropriate at times. But still, often, himself. My aunt visits, and he pulls out her chair like the gentleman he’s always been.

Elinor writes that FTD would “change and diminish” her husband, and then kill him three years and eight months after the first signs of trouble. Eventually, his language was whittled to a four-word answer to everything: “I’m a happy guy,” he would say.

Which of course makes me wonder about my Dad’s final words. His voice still has his chipper, inviting tone, though the words he says no longer plug into conversation. Will they encapsulate his life in some way? Have a double meaning? Be humorous? Make any sense at all?

Read Elinor’s essay.

Remembering a parent with Alzheimer’s

March 31, 2010

Sue Wronsky writes in the newspaper supplement I edit, “Healthy CNY” about her mother and Alzheimer’s disease:

I don’t recall the last “normal” conversation I had with my mother.

One of her many caregivers during her 11-year battle with Alzheimer’s disease, I vividly remember our time together during the last years of her life. As it happens, the most recent memories of moments spent with this amazing woman – who had once been a world traveler, an advertising executive, a teacher, a Eucharistic minister, a military wife, an avid reader, a sister, a friend, a mother of seven and grandmother of 11 – were of feeding her lunches the consistency of baby food, giving her sponge baths, and trying to settle her unquiet thoughts by speaking softly in her ear as if she was a scared child….

Continue reading her essay (and see a picture of her mother)


Hallucinations? Or deteriorating vision?

March 14, 2010


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.


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