Maintaining Selfhood and Dignity in Patients With Alzheimer’s Disease

By Nancy Bryce, Contributing Editor
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Many professionals and family caregivers are concerned that we are "labeling" people with Alzheimer’s Disease instead of seeing each one as a person. Dorothy Seman, RN at the Alzheimer’s Family Care Center in Chicago, says, "It is important to know what disease a person has, but more important to know the person the disease has." Seman also says, "People with dementia are much more than plaques and tangles." By speaking with people in the early stages of Alzheimer’s Disease, we get insights into their needs and how to support their independence and dignity.

Every person afflicted with Alzheimer’s Disease will react and deal with the disease differently. Some will show improvement with different drug therapies while others will not. Support groups may be beneficial to some while others may find them unnecessary. At the recent World Alzheimer’s Congress in Washington, DC, several people with Alzheimer’s Disease spoke about their different needs and outlooks on the future.

There was Tom who said, "Alzheimer’s has been the best thing that ever happened to me. It freed me to do things I wanted to do all my life." Then there was Gloria who wanted everyone to know that she has a memory problem but does not feel that makes her "demented." "Demented", she said, "means without a mind" and she does have a mind. And there was Dale who found out he had Alzheimer’s Disease at age 57. He and his wife have benefited greatly from the support groups they attend. Both caregivers and patients were full of hope for the future and expressed the need to maintain selfhood as the disease progresses.

Common Themes Among People Diagnosed With Alzheimer’s Disease

Lisa Snyder, LCSW at the University of California, San Diego, identifies six common themes that arise when a person is diagnosed with Alzheimer’s Disease. Understanding and anticipating these themes will help both the caregiver and person with the disease to maintain dignity and independence, while laying the foundation to a mutually supportive relationship as the disease progresses.

1. Denial. Too many people believe that people with Alzheimer’s Disease are not capable of understanding the disease. However, Snyder has found that some may go through periods of denial because of the difficulty in accepting the disease. Bill, a person diagnosed with Alzheimer’s Disease said, "I’m interested in this idea of denial. I think denial is helpful sometimes. You don’t want to carry this all the time. Denial can be very adaptive. It’s a psychological defense; we all use it and it can give us time to accommodate to a circumstance that may be very challenging." It is understandable that there is denial in some cases because of the unpleasant stigmas associated with the disease. James, another patient said, "A degree of denial is essential; like somebody drinking hot coffee, we sip the truth of our condition gently."

There may also be denial due to the fear that the person with the disease may become prematurely dependent. Or they may simply forget that they have the disease. Persons with Alzheimer’s Disease need understanding if they fluctuate between acceptance and denial.

2. Ambivalence in Disclosing Diagnosis. Because there is not widespread understanding of Alzheimer’s Disease, there are often misconceptions about the disease. Some with the disease fear that others will think the disease is contagious. Those diagnosed may also fear the stigma associated with the disease; therefore, they may not disclose it to their friends or family. Betty, a person with Alzheimer’s Disease, said, "when it comes to Alzheimer’s, you’re not sure how people will respond to you, people may brush you away because they're afraid of the disease." Snyder believes the ambivalence begins in the doctor’s office. She contends that when doctors do not appropriately disclose the Alzheimer’s Disease diagnosis to family members, that they are beginning the cycle of ambivalence.

3. Wanting Things to Stay the Same. There are often times when the feeling of: "If things could just stay as they are at one point in time," that those with Alzheimer’s Disease could learn to adjust to the disease. Harry said, "If only it could stay just as it is now; it would be great." Unfortunately, with this disease, it is always changing. Each day is different. One day the person with Alzheimer’s Disease may be able to do something and the next day they may not.

4. Fear of the Future. Among Alzheimer’s Disease patients, there is a fear of losing a sense of self. "What is going to happen to me?" is often the question that arises among those with the disease. One woman said, "I’m almost 71 and I’m not amazed that people die, so it isn’t the death; it’s the loss of oneself while you’re still alive." There are so many tragic images that can lead to fear of losing oneself to the disease. One wife very aptly said, "I’m very much aware that it’s a true medical disease. I realize now, at least in our case, that it appears to be a gradual process so it’s something we have to work our way into and through. So I’m finding it doesn’t mean an immediate personality change or becoming violent like I’ve heard. All this stuff you hear may happen among some people at some level but it’s gradual and you can adjust to it."

5. Day to Day Experiences of Memory Loss. Everyday is a new experience with Alzheimer’s Disease. One person adjusting to the disease said, "I take a step before doing something and ask, ‘Am I the same person? Can I do this?’" There may be daily changes in language and abilities to do certain tasks such as driving or paying bills. One man, who was an editor, said, "I’ll search for a word and I can see it walking away from me; it gets littler and littler, it comes back to me but at the wrong time; I can’t be spontaneous." Bob described his feelings about no longer being able to drive. He said, "losing my driver’s license was like someone cutting off my arm. I lost something that was a part of myself."

6. Changes in Self-Esteem/Self-Concept. Everyone defines themselves by their roles in life or by their characteristics. Those with Alzheimer’s Disease may be in a state of flux about how to define themselves. For example, before Alzheimer’s Disease, a mother may have defined herself by the role she played as the matriarch in the family. A man, who defined himself by his role as a doctor, may now find that that persona is lost. One woman demonstrated her ambivalence about her identity when she said, "sometimes I’m me and sometimes I don’t know who I am, I don’t know. It comes and it goes. You’re not really you, you’ve got someone kind of in back of you." Those with Alzheimer’s Disease need to be reminded that they are still people who will continue to be remembered for the roles and traits that defined them as well as their new roles. In later stages of the disease, providing the person with activities that reflect their previous expertise and interests enhances their peace of mind and autonomy.

An Alzheimer’s Disease Bill of Rights

Virginia Bell, MSW and David Troxel, MPH, authors of The Best Friends Approach to Alzheimer's Care, have created "An Alzheimer’s Disease Bill of Rights" in which they define the needs of people with Alzheimer’s Disease to maintain their selfhood and hopefulness. They write: Every person diagnosed with Alzheimer’s Disease or a related disorder deserves:

  • To be informed of one’s diagnosis.
  • To have appropriate, ongoing medical care.
  • To be productive in work and play as long as possible.
  • To be treated like an adult, not a child.
  • To have expressed feelings taken seriously.
  • To be free from psychotropic medications if at all possible.
  • To live in a safe, structured and predictable environment.
  • To enjoy meaningful activities to fill each day.
  • To be out-of-doors on a regular basis.
  • To have physical contact including hugging, caressing, and hand-holding.
  • To be with people who know one’s life story, including cultural and religious traditions.
  • To be cared for by individuals well-trained in dementia care.

Insights on Helping Their Loved One Maintain Selfhood

Daniel Kuhn, MSW at the Mather Institute on Aging, stresses the need to reach people with Alzheimer’s Disease in the early stages of the disease. He said, "Much more can and should be done to prevent the distress of patients and families through early intervention; not only with drugs but in terms of education, training, counseling and other supportive services. By intervening at the earliest stages, those with Alzheimer’s Disease can be included in the treatment of their disease and can be supported by family and friends to help them maintain a strong sense of self and hopefulness." Both caregiver and patient should attend support groups.

Insights for families coping with Alzheimer’s Disease

  • Allow your loved one with Alzheimer’s Disease to express herself verbally and creatively.
  • Advocate for autonomy, choice and independence. Don’t always jump in and try help your loved one. Let them do it themselves.
  • Create a healthy habitat, environment and atmosphere.
  • Encourage discussion of present and future. Don’t only reminisce.
  • Your loved one may have greater fear and concern with "looking stupid" or being embarrassed in public than in forgetting things.
  • You will likely have to rearrange your lifestyle, perhaps retiring early or moving.
  • Explore and implement legal and financial planning changes as soon after diagnosis as possible after consulting skilled professionals.

Especially for the caregiver:

  • Find time for yourself.
  • Learn to be patient
  • Come to terms with your loved one’s dependence and decline.
  • Learn how to really listen.
  • Caregiving can be lonely. Maintain your friendships and attend support groups.
  • Live one day at a time.

These insights are easy to write out, but hard to live with day-by-day. Caregivers can find camaraderie and empathy in support groups through their local Alzheimer’s Association, hospital or nursing home. Internet support and discussion groups provide an opportunity to interact any time of the day or night.

Sources

This article was adapted from presentations at the World Alzheimer’s Congress in Washington, D.C., on July 15, 2000 by Dorothy Seman, RN, MS, NHA, Alzheimer’s Family Care Center, Chicago, Illinois; Lisa Gwyther, MSW, Duke University Alzheimer’s Family Support Program, Durham, North Carolina; Daniel Kuhn, LCSW, Mather Institute on Aging, Evanston, Illinois; and Lisa Snyder, MSW, LCSW, University of California, San Diego, La Jolla, California. Individuals with Alzheimer’s Disease and their caregivers also participated in the panel discussions, but requested anonymity.

Resources

Books

   Alzheimer's Early Stages: First Steps in Caring and Treatment by Daniel Kuhn
   Speaking Our Minds: Presonal Reflections From People With Alzheimer's by Lisa Snyder
  
The Best Friends Approach to Alzheimer's Care by Virginia Bell, MSW and David Troxel, MPH

   Early Alzheimer’s, An International Newsletter on Dementia, 2024 De la Vina Street, Santa Barbara, CA 93105, phone number: (805) 563-0020.

Available from ElderCare Online™              www.ec-online.net             2000 Prism Innovations, Inc.