August 15, 2011

Dementia care's hard lessons

Maine Savvy Caregiver program provides critical knowledge about brain diseases for at-home caregivers

FARMINGTON -- To avoid upsetting her mother, who has dementia, Cheryl Barkow used to go into the bathroom, turn the shower on and cry.

click image to enlarge

CARING: Cheryl Barkow comforts her mother, Alice Osborne, 93, as she tries to complete a puzzle at the kitchen table at Barkow’s home last week. Barkow and her husband Larry care for Osborne, who suffers from dementia.

Staff photo by Michael G. Seamans


The program, Maine Savvy Caregiver, is sponsored by the Office of Elder Services and Department of Health and Human Services, and is funded by the Administration on Aging, Alzheimer’s Disease Supportive Services Program grant.

The initial $715,000 grant funded the six-week course at sites statewide for three years, with 660 caregivers participating as of July and the program ending this fall.

Another $896,000 grant is funding another round of classes for caregivers, with details still being finalized as to the schedule and curriculum.  

For additional information or to register for classes contact the Alzheimer’s Association, Maine Chapter at 772-0115.


Ten warning signs of Alzheimer’s disease:

• Memory loss that disrupts daily life
• Challenges in planning or solving problems
• Difficulty completing familiar tasks at home, at work or at leisure
• Confusion with time or place
• Trouble understanding visual images and spatial relationships
• New problems with words in speaking or writing
• Misplacing things and losing the ability to retrace steps
• Decreased or poor judgment
• Withdrawal from work or social activities
• Changes in mood and personality

Source: Alzheimer’s Association and the Maine Office of Elder Services


• Dementia is caused by various diseases and conditions that result in damaged brain cells or connections between brain cells.
• More than 37,000 people in Maine suffer from dementia, and 75 percent of them have unpaid at-home caregivers.
• In 2010, there were nearly 15 million Alzheimer’s disease and dementia caregivers nationwide providing 17 billion hours of unpaid care valued at $202 billion.
• An estimated 5.4 million Americans of all ages have Alzheimer’s disease in 2011. This figure includes 5.2 million people aged 65 and older, and 200,000 individuals under age 65 who have younger-onset Alzheimer’s.
• One in eight people aged 65 and older (13 percent) has Alzheimer’s disease.
• Nearly half of people aged 85 and older (43 percent) have Alzheimer’s disease.

Source: Alzheimer’s Association and the Maine Office of Elder Services


• When a patient dwells on a painful memory, such as asking for a dead family member, it’s important to move on to something more calming.
• Don’t look at it as lying when you tell a patient something untrue to calm them. Look at it as making them feel comfortable.  
• Watching facial expressions is an important part of understanding frustration and confusion.
• Keep patients active mentally and physically: Try puzzles, reading, walking, whatever is comfortable for the patient.
• Take care of yourself. A caregiver who doesn’t remember to take care of himself or herself can’t take good care of the patient.
• Avoid asking patients to make unnecessary decisions, such as choosing between two different outfits.
• Be conscious of how colors can be confusing. For example, a patient may refuse to eat a favorite food, such as pasta and vegetables, because the colors are mixed. Then he or she may enjoy the meal again once the ingredients and colors are separated.
• Talk about challenges, frustrations and breakthroughs with others, especially with other caregivers and doctors. It becomes a release valve.
• Tell other family members, friends and others who may visit how to avoid upsetting the patient.
• Plan for the future. Be prepared for decisions that arise for caregivers, such as how to get a patient into a healthcare facility when you can no longer manage the disease’s symptoms.



With the flowing water masking her sobs, she would stand alone for a few moments, feeling helpless and unprepared to handle caring for someone with such a life-altering brain disease.

Then she took a class for at-home caregivers of dementia patients, sharing what she learned with her husband, Larry, who helps care for her mother, Alice Osborne.

After the class, things started to get better for the couple and today they have been Osborne's full-time caregivers for more than two years.

Cheryl Barkow is among 660 caregivers in Maine who have taken the six-week course -- known as Maine Savvy Caregiver -- which is a free elderly services program that is trying to meet a growing demand for educating the thousands of unpaid, under-trained at-home caregivers across the state.

She sat at the kitchen table last week with her 93-year-old mother, encouraging her to smile while having a cookie and tea after lunch.

Osborne, in a wheelchair, the large colorful shapes of a partially finished puzzle laid across the table in front of her, looked up at her daughter and smiled.

"I didn't understand anything about (dementia) before the class, and I learned to keep her smiling and content, and how that's what it's all about," Cheryl Barkow said.

"She's got such a great smile," the daughter said, holding her mother's hand and patting her shoulder reassuringly.

Larry Barkow, 64, said the tips his wife brought home from the class made a big difference, teaching him about the many pitfalls caregivers can encounter unknowingly.

But learning about so many other people taking care of their parents, grandparents, siblings and spouses with dementia is really what changed his approach to being a caregiver, the Vietnam War veteran and retired truck driver said.

"The important thing is to know that you're not alone," he said.

There are more than 37,000 people in Maine with dementia, a term used to describe a range of diseases that damage brain cells, affecting everything from the person's memory to physical abilities.

About 75 percent of them have unpaid at-home caregivers, many of whom are family members caring for the typically elderly patients, according to Laurie Trenholm, executive director for the Alzheimer's Association Maine chapter.

With Maine's aging population, the need to train these caregivers will only increase in coming years. It's a problem that is tied to the inability of health care facilities, which have state regulations controlling the number of available beds, to provide enough space for the growing number of dementia patients, Trenholm said.

There is constant debate about getting more space in health care facilities dedicated solely to dementia patients, many of whom have been on waiting lists for years, but this discussion also has to take into account realities about the disease, according to Trenholm.

It's well established medically that people with dementia have been shown to fare better at home, and providing better training to help keep them at home longer has been the solution many experts say is the key, she said.

"Dementia is a lot more than memory loss; there are issues with (patients) wandering and other safety concerns and a lot of education is needed to make the caregivers able to make it more safe (for patients) and feel supported themselves," Trenholm said.

"This is really where we can build capacity," she said.

'A tremendous need'

There is no cure for Alzheimer's disease and some other forms of dementia. The diseases are typically progressive and symptoms get worse as time passes, eventually reaching a point where the person loses mental and physical abilities.

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