As reported by Healthcare Ledger, March 2011.

Alzheimer’s Disease and the Power of Caregivers

By Joan Long

Alzheimer’s disease is a disease of the brain that has no cure. It affects a person’s memory, thinking, and behavior. Its causes are not entirely known. While caregivers can find support through local physicians and associations, another powerful aid is their own behavior and awareness, and as Celia Pomerantz, Milford, CT, illustrates in her book Alzheimer’s: A Mother Daughter Journey, one can transform daily challenges into memorable moments with affected family members. When a family member begins to show signs of dementia, it is a stressful time for other family members who may not know where to turn for information and support. They may have heard about the disease and pushed the subject to the back burner, hoping to avoid having to face it, or they may have misunderstandings about its signs and symptoms.

Most Common Form of Dementia

Alzheimer’s disease has no cure; it is a degenerative disease of the brain and is the most common form of dementia, effecting memory and behavior. As it cannot be confirmed until an autopsy is performed, with examination of brain tissue, it is frustrating for family members and patients to accept it, understand it, and learn how to cope with it. Other types of dementia include vascular dementia, Parkinson’s disease, Huntington’s disease, Creutzfeldt-Jakob disease, Pick’s disease, Lewy body dementia, and frontal lobe dementia.

Patrick Coll, M.D., physician, University of Connecticut Center on Aging, Farmington, CT, says that a high percentage of people with mild cognitive impairment (MCI) go on to develop dementia. “We cannot differentiate those who will and those who will not,” he said. “We tell MCI patients that it is important to manage their cardiovascular risk factors, because a healthy heart means a healthy brain.” He discussed recent evidence that shows that physical exercise preserves memory function even more than mental exercises. A positive note for those suffering from the disease, is that in Coll’s experience he has rarely seen anyone abandoned by their family— more likely the opposite—people are putting their own lives aside to provide care. “Most families will do amazing things to take care of their loved ones with Alzheimer’s,” he says.

The Alzheimer’s Association is a good place for anyone to start who wants to learn more about it, volunteer their time, or ask for a referral. The Alzheimer’s Association has a 24-hour help line, which is a big support to families facing urgent situations. Of course, the Alzheimer’s Association always suggests that you speak to your physician as soon as there are symptoms. Marcia McKenzie of the Alzheimer’s Association, Springfield, MA, says there is a new push to get the word out about the Association’s “early detection matters” campaign, with the ten warning signs of the disease. People are urged to contact their physician (or the Alzheimer’s Association) for more information:

  • Memory changes that disrupt daily life
  • Challenges in planning or solving problems
  • Difficulty completing familiar tasks
  • 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

The Alzheimer’s Association focuses on education, referrals, and advocacy. McKenzie calls the disease “the brain’s inability to process data or connect the dots.” Even though the disease is so prevalent, McKenzie says, “In some ways, it is still a closet disease, but more and more people are talking about it.” She stresses that the educational programs offered by the Alzheimer’s Association are provided at no cost to caregivers. She welcomes anyone interested to contact her, as there is always a need for volunteers skilled in teaching, marketing, and other areas to get involved. She said the Alzheimer’s Association also has early-stage patients who advocate on the state level, at public policy forums, and at local fundraising walks and conferences.

Both McKenzie and Coll agree that even in the past decade, treatment of Alzheimer’s patients is showing a more concentrated focus on quality of life, and how to care for patients by anticipating their behavior, keeping their minds stimulated, and learning how to communicate effectively with them. A recent New York Times (January 1, 2011) article featured a facility that found success by simply giving Alzheimer’s patients what they want, whether it is a piece of chocolate in the middle of the night, a cocktail, or a toy doll, whatever it is that provides a source of comfort. This article also suggested that “creating positive emotional experiences for Alzheimer’s patients diminished stress and behavior problems.”

Safety, Happiness, and a Photographic Journey

Pomerantz used a very focused, logical method to help her be strong for her mother, Celia McTague, who passed away in 2007 of the disease. Although her method of thinking was quite logical, she used it as a springboard to be able to “unplug,” be there for her mother, and use creative ways to connect with her, turning a stressful process as this into a time period that contained many beautiful and memorable moments. She decided to capture the process with her iPhone camera and published Alzheimer’s: A Mother Daughter Journey in 2010 as both a personal tribute to her mother and a way to help others find a connection and a source of hope in their own experience as a caregiver. “The first step in being a caregiver is the hardest, because when one accepts that role, one is accepting the fact that the family member is perishing,” says Pomerantz. “Nobody wants to take that first step, because it is acceptance.” Although it may sound challenging and grim, she points out that once one accepts the role, one can find creative ways to deal with it and become a positive force in the loved one’s life.

As an only child, the role of caregiver fell completely to Pomerantz. She soon developed a mission plan for herself. “I called it ‘safety and happiness.’ Everything I did, I wrapped into that decision. It helped me to separate the level of guilt I was feeling.” She says this simple mission helped her when having to think about financial decisions, doctor’s appointments, and when to move her mother from independent to assisted living, and finally to a nursing home.

Pomerantz felt overwhelmed as one of the staggering legions of “unpaid caregivers.” “You do not feel like you have support,” she says. “I decided I was going to turn to myself. In a time of crisis there’s something about you that will make you successful. You will find something inside that helps you get through this.” For her, the “magic” was that she loves people. She knew she would need to understand her mother in a different way. “How could I help her be the best she could be? As soon as I figured that out, I was okay.” She says a helpful source of information was a chart by the Alzheimer’s Association that showed each stage of the disease and the corresponding abilities. “When a stage equated to that of a child’s development, I began to realize that my mother was living independently at the age of ‘seven,’ and I needed to think of her as an ‘infant’ when she needed 24- hour nursing home care. When I began to realize that it was the disease, the decisions became easier,” she explains.

Pomerantz’s photos illustrate the importance of forming a connection with her mom, even when language was not an option. “When you get to the point where language is not something they can use effectively, it is most important to try to put that aside and listen to the emotions.” She describes simply holding her mother’s hand, whereby “I could feel if she was cold, if she could not tell me. She could also clasp my hand when she was afraid.”

She describes the role of primary caregiver as something that takes creativity. “You are frozen with fear and despair,” she says. Even so, she learned to appreciate the personal moments and found some wonderful stories in the midst of it. She shared the story of receiving a late night phone call from a nurse who said her mother was convinced she was married to another resident of the nursing home. “She did not even know his name,” says Pomerantz, “but how wonderful that she made a connection. Even with this disease, they still need to connect, hold hands, and be loved.”

She describes the importance of learning to not always “correct.” One of the first times her mother visited her house, a lot of personal items were familiar, and perhaps her mother was confused about whether or not she had lived there. “Language can be overrated. It is about listening to the emotions. There is no need for me to say ‘Mom, you never lived here.’ It makes them even more insecure.”

Pomerantz describes the photographs as helping her connect to her mother in unique ways. There is a shot of her looking in the mirror at herself, and Pomerantz says, “She did not seem to know who she was. Photos help you see how your loved one is going through it,” she says, “You have to be in the moment. You cannot think about something else, or they ‘hang up’ on you.”

She was there at the end, when her mom passed away, surrounding her with flowers, perfume, and Latin music. “People in our culture are so afraid of death. I felt so honored. There should be a word in English to describe it. It was not scary but was the final stage of caregiving,” says Pomerantz.

After her mother died, Pomerantz held a celebration “in a Spanish way,” she says, “with Puerto Rican food, music, and my mom’s sweet 16 photo made into a poster.” Instead of church cards, she printed a photo of her mom along with her recipe for empanadas, so the family can remember her while they try her favorite dish. Pomerantz adds, “There are a lot of beautiful moments in caregiving, and the end was one of them.”