It is not a disease like cancer, diabetes or the flu. Dementia isn't easily diagnosed. Sometimes it is not apparent for years. But when its presence is realized, caregivers must step into the breach without much or any preparation for the long haul with an incurable, chronic, progressively debilitating disease.
That lack of information and the uncertainty that comes from dealing with dementia is the reason why the Alzheimer's Association in Wisconsin has started training caregivers with a new program intended to better prepare them for what lies ahead. It is training that experts in the field say is needed.
For six weeks in August and September, a group of people providing care for dementia patients met at Mount Pleasant Lutheran Church for a program that is new to this part of the state and has only been used in Wisconsin for about a year. "The Savvy Caregiver" took participants through extensive training about dementia - what happens in the brain, how that affects the thought processes of people afflicted, and how caregivers can cope with those changes.
It is not a class for everyone, nor is it a class for people whose relatives have just been diagnosed with dementia, said Paulette Kissee, regional services manager for the southeastern Wisconsin chapter of the Alzheimer's Association. People in the class need a certain amount of experience with the disease in order to appreciate some of the lessons. They may not believe that all of the information will apply to them at some point.
But the message about dementia (of which Alzheimer's is one type) is that it all applies. Patients will go through each stage unless something happens to end their lives. As part of her introductory classes, Kissee used to show a video of a person in end-stage dementia. She stopped because people found it too upsetting.
Denise Kopitzke, who lives in Wind Lake and looks after her mother in Brookfield, said it was difficult to even think about her mother progressing through the stages described in the caregiver class, yet it was also good to hear that information because it does help prepare one for what is to come.
In many cases, people may not look for information about dementia until they need it. It is overwhelming to deal with a person diagnosed with dementia. Also, our minds are filled with other tasks, and we don't seek more mental clutter.
"And the other piece of it, I think, that also may be human nature, is the idea of you do what you can cope with at the time," Kissee said. "The function of our denial is to protect us, and we take those things in as we are able to handle it."
"I think people do not really understand the scope of the impact of Alzheimer's disease on that individual and their family. It's a whole lot more than simply memory loss. It impacts every aspect of the person's ability to function."
"It's the thought process that's equally wrong, as well as she forgot what she had for breakfast," Kopitzke said. Once the oven light in her mother's stove went out. Her mother's first reaction was to blame the cleaning person for breaking it, but despite encouragement, her mother could not focus on an alternate idea: The manual switch was set to off.
Keeping dementia patients content and involved is a key to keeping them calm because it reduces the need for them to exercise the judgment which they are losing. In the class, Kopitzke said, she had time to step back and understand what she could have done better. For example, last Christmas, the family gathering was at her mother's house, but Kopitzke and her brother's family brought all the food because her mother also has difficulty carrying pots and containers.
"So what did she do but go sit in the front room and give us the kitchen. ... But you know what, I didn't involve her in any way. I didn't ask her to help set the table. My sister-in-law and I just came in and took over the house. ... It just kind of made her a piece of the furniture."
What would have been better, she said, would have been to ask her mother to participate in even a small way such as helping with place settings. It's like cooking with young children, Kopitzke said. You assign tasks based on each child's ability.
Geri Sorensen, who lives in Somers, said she wishes such a class had been available 20 years ago when her in-laws began suffering from dementia.
"We really didn't know what was the reason for the behavior. ... Had I known that was the reason for the behavior they exhibited, it would have saved a lot of hardship and getting upset with them."
Now she's dealing with her mother's dementia. The class has changed her approach, she said. She sets up routines which are easy for her mother to remember, and she is careful not to become upset which is what she had done when her father, who died last year, accused family members of stealing.
"People with dementia are super, super sensitive to emotions," said Jamie Jacobs. "So how they're going to react in a day depends very much on your mood and how you react to things."
"So I learned a lot about keeping my emotions in check all the time when I'm around him."
Jacobs lived in Kenosha for many years but in May moved to Schaumburg, Ill., to help her mother deal with her father, who is now in a home that specializes in the care of dementia patients.
The signs of dementia in her father were clear. He stopped grooming himself. This had been a man who every Saturday night polished all his shoes and who kept dated cards in his suits so that he would not wear any suit more often than once a month.
One day her father was convinced that her mother was having an affair. Jacobs told him she could show him her mother's boyfriend. She pulled a mirror from her purse and held it up so he could see his own face.
"And it made him feel better. He needed reassurance."
Prior to the class she would have become angry in reaction to his anger, and the emotions would have fed on each other. Now Jacobs knows the value of humor and not joining in negative emotions.
People who are better prepared with information are better able to understand what is happening to dementia patients, said Sue Cooper, a geriatric nurse-practitioner at Wheaton Franciscan-All Saints. They are also not running to an emergency room, and incurring a large bill, for normal changes in the course of the disease.
Cooper said her office staff spends a great deal of time helping people understand the disease and what they can or cannot do. Often they believe that it is their duty to care for a family member.
"I took care of my mother who had dementia as well," she said. "Even being a professional ... I had to put her in the nursing home her last month of life."
The reality of dementia is that we don't know what causes it, Cooper said. Alzheimer's cannot be definitively diagnosed without a postmortem exam to look for the characteristic tangled molecules in the brain. There are some drugs available, but they only maintain the dementia patient on a plateau. Eventually those patients resume a continual decline.
Because of the difficulty in diagnosing dementia, and to make sure that medications or some other disease isn't causing similar symptoms, people who may have the disease should be seen by a physician who knows a great deal about it or, preferably, should go to a clinic specializing in memory disorders, said Michele Ries. She is a neuropsychologist and a researcher at the University of Wisconsin Alzheimer's Disease Research Center in Madison.
It's also critically important that caregivers take care of themselves, she said.
"A caregiver is so focused on another person, right? You almost forget about your own existence sometimes."
About one-third of caregivers become depressed, and the effects of that are well documented and include impaired immune systems. A large four-year medical study found that caregivers were 63 percent more likely to die because of the strains inherent in what they did. And of course, she said, caregivers who don't take good care of themselves cannot care well for a loved one.
It's even important to deal with the emotions which Jacobs learned to keep in check.
"You can keep that from the person but you do have to do something with those emotions or they will continue to build. It's just like a pressure cooker," Ries said. Preferably a caregiver will talk through those emotions with a therapist.
"It's like watching death for years. ... It's worse than death because there's no closure. It just keeps on going," Jacobs said.
But if there is one message to come from the class and from groups like the Alzheimer's Association it is this: No one dealing with dementia is alone.