Jytte Lokvig, author of
Alzheimer's A to Z.

New Harbinger Publications: Your book draws on your considerable experience working with people with Alzheimer’s disease. How did you get involved in Alzheimer’s care?

Jytte Lokvig: In 1994 a friend asked me to visit with her mother at a local assisted-living facility while she was away on business for three months. I had never before met anyone with Alzheimer’s. The disease was not yet a common part of public discourse.

I would visit my new friend and her fellow residents several times a week and started connecting with the group. By the time my friend returned, I was engrossed with this population. I have worked in the field ever since, specializing in communication, quality-of-life programs, and activities. I teach classes, hold workshops, and coach families and professional caregivers on communication and attitude. I consider myself incredibly lucky to have become involved with this work. I find this the most rewarding undertaking of my rich life.

NHP: What are some common misconceptions that people have about those with Alzheimer's?

JL: We’ve become so obsessed with Alzheimer’s as a disease that we’re forgetting the humanity of the individual. A person with Alzheimer’s is generally referred to as a patient. This evokes an image of the individual as less than a whole person.

We look for weaknesses brought on by the disease rather than the person’s strengths and the humanity. Someone can suffer almost complete memory loss and even the ability to speak yet still have the same range of emotions and desires as the rest of us. People with Alzheimer’s can certainly experience a rich life, albeit in the moment.

It’s true that the disease is hard on family members. On the other hand, people with Alzheimer’s typically reach a point when they become unaware of their memory problems. As people progress into the disease, the anxieties accumulated over their lifetimes fade away. Shame, remorse, inadequacies, failures, regrets, and grudges are forgotten. At this point people with Alzheimer’s can have the best time of their lives, provided they receive positive attitude and communication from their caregivers.

NHP: You have a wide range of topics in your book, from "acceptance" to "zippers" —what is the benefit of the book's encyclopedia format, and how does it help caregivers?

JL: When I first got into this field, I sought out the literature available at the time. I learned a lot about the pathology of the disease but found woefully few answers to my daily questions. I needed a resource where I could access information easily. After I had been in the field for many years and fine-tuned my communication and approaches, I decided to write the book that I would have found helpful at the time. The A-to-Z format gives the reader quick access to specific topics without having to read through whole chapters. I often use realistic dialog to present examples of effective communication in typical situations.

NHP: What are a few of the biggest challenges facing someone caring for a parent or spouse with Alzheimer's?

JL: Family members, spouses, or long-term friends typically have great difficulty accepting that the person they’ve known and loved for so long has undergone drastic internal shifts and will never be quite the same again. He or she may exhibit personality changes, and it often takes time for caregivers to learn how to change their communication and expectations—to basically build a new relationship with their friend or loved one.

There often comes a point when people with Alzheimer’s forget the names of those closest to them, which is very hard for their loved ones to handle emotionally. But even when people with Alzheimer’s forget a name, they usually will recognize a family member as someone who loves them. Family members who change the way they communicate can take advantage of this recognition. If they introduce themselves by saying something like, "Hi dad, I’m your daughter Jane. I’m so glad to see you. You’re looking really good. I’ve always been so proud of my handsome dad,” they can help the person with Alzheimer’s feel connected to them. Adding the compliment as part of the greeting can really help the connection. Even if the individual doesn’t show signs of recognition, at least he or she has been validated as a person.

NHP: You mention in your book the affect that crowds and public places can have on a person with Alzheimer’s. What is the best way to respond to outbursts in public?

JL: In a bustling environment it may be difficult for people with Alzheimer’s to sort out impressions. This can leave the, confused, scared, and lost. They may panic and get agitated. They need peace and quiet to help them feel safe again. The best tactic is to validate their reaction, then quickly and calmly escort them away from the crowd, find a quiet space, and change the mood by talking to them in a reassuring tone about something unrelated. When people with Alzheimer’s are agitated, aggressive or have outbursts, there is always a cause. They may not be able to express themselves in any other way. The cause could be physical or psychological. It’s important to validate their feelings and seek out the cause.

NHP: Could you explain what paperwork people with Alzheimer’s should carry on them at all times, and the significance of each document?

JL: People suffering from dementia may have problems with directions, and if they get lost, they may only remember their address from forty-five years ago. I strongly recommend that people with Alzheimer’s or dementia wear a permanent medical alert bracelet that will let people who try to help them know they are memory impaired. These bracelets should also be inscribed with the contact information of a responsible person. I also recommend that caregivers and companions of any elderly person always carry copies of that individual’s important paperwork: a power of attorney for medical purposes, a do not resuscitate order (DNR,) if the individual has chosen one—and of course any important contact numbers for medical purposes.

NHP: What are some ways that caregivers and loved ones can keep their spirits and energy levels up?

JL: Most caregivers are incredibly caring and giving people. They tend to concentrate their energy on their care receivers, forgetting to take care of themselves. They may feel negligent if they take time out for themselves. But the better they feel physically and emotionally the more effective they are as caregivers. They need good nutrition, supplements, and exercise, as well as time away from care giving. I recommend that caregivers follow a kind of “shopping list” of good things they can do for themselves: They should learn the secrets of effective communication with care receivers. If care receivers feel good, their caregivers’ lives will be much improved. They should do things with their care receivers that both enjoy. They shouldn’t take things too seriously and should approach daily situations with a sense of humor. They should forgive themselves for not being perfect and should delegate as much as possible, insisting that family and friends help out with tasks like shopping, cooking, and housework - or hiring help for these tasks. This will free them up to spend fun times with their care receivers. They should also take advantage of respite care programs offered by local senior services or the Alzheimer’s Association …and, of course, they should use Alzheimer’s A to Z to guide them through the day.