A Personal Guide to Living with Progressive Memory Loss

Prudence Twigg, Sandy Burgener

• Publisher: Jessica Kingsley Publishers
• Year: 2007
• ISBN:
  9781846427190
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

Memory loss can create problems in every aspect of a person's life. The challenge of communicating thoughts and feelings can be made even harder by other people's negative perceptions of dementia.

This book provides practical guidance for coping with progressive memory loss, and includes examples of real people who have faced similar challenges. These stories highlight both good and bad ways to deal with the problems that arise, and are also useful for describing the experiences of memory loss to friends and family. The authors suggest ways of maintaining physical and mental health by staying active and engaged in society. They also offer techniques for improving communication, preserving self-esteem and overcoming the stigma associated with memory loss.

A Personal Guide to Living with Progressive Memory Loss offers inspiration and advice for anyone in the early stages of dementia. It also provides useful insight for family and friends who wish to offer support for a loved one affected by progressive memory loss.

CHAPTER 1

What Progressive Memory Loss Means to You: Claiming the Diagnosis

How do you accept a diagnosis of Alzheimer’s disease or any progressive disease that causes loss of memory and interferes with mental functioning? This is a hard question to ask and a harder question to answer. Any progressive disease that affects the ability to think or remember is not easy to face. People receive this diagnosis in a lot of different ways. Some people have said they’ve felt as though they were “punched in the stomach.” Others say the diagnosis is something they never wanted to hear again. Yet, going through the diagnostic process and receiving and accepting a correct diagnosis is the first important step to managing the disease. This chapter describes the process of diagnosing progressive memory loss. Responses to the diagnosis are described, including steps to take after a diagnosis is made.

Why is it important to obtain an accurate diagnosis? First, progressive memory loss can be caused by physical problems that can be treated. Treatable causes of memory loss are often called “reversible” forms of dementia. These treatable physical problems produce symptoms that look like Alzheimer’s disease or other causes of progressive memory loss. A very good reason, then, to get an accurate diagnosis is to find and treat other causes of memory loss. Also, an accurate diagnosis helps you to understand the symptoms that you experience on a day-to-day basis. Some people have said that they were almost relieved to know why they had symptoms, including memory loss. Symptoms of progressive memory loss can be vague and difficult to describe. Giving a name to those symptoms can be a relief to the person who is having them.

Another reason to obtain an accurate diagnosis is to receive appropriate treatment. Two types of medications are now approved to treat progressive memory loss, with many more medications being tested. These medications can be especially helpful in the early disease stages. By having an accurate diagnosis, you can seek appropriate medical care to help you manage your everyday symptoms. Many non-medication treatments are also available. You may be able to function better if you receive these combined therapies: medication and non-medication therapy.

Getting an accurate diagnosis helps you plan for your future. It is difficult to plan for your future if you do not know the changes that may lie ahead. Receiving an accurate diagnosis gives you the chance to enroll in a research study testing a new medication or treatment. Many promising treatments for dementia or progressive memory loss take years to study before they receive approval by the Food and Drug Administration (FDA). Enrolling in a research study can give you access to those treatments long before they are available to the general public. A diagnosis of dementia or progressive memory loss will certainly not be what you want to hear. However, getting an accurate diagnosis can be helpful to you and your family.

Getting a diagnosis

How does a person go about obtaining an accurate diagnosis? First of all, an accurate diagnosis requires a very thorough history and physical examination. This examination includes an evaluation of your physical health, including a screening for any physical cause for the changes in your memory and mental ability. The examination will also include a very thorough testing of your mental ability. This testing assesses any impairment you might have in your short-term or long-term memory, judgment, perceptions, and reasoning. The healthcare provider will also conduct blood tests to look for physical problems that may be causing your symptoms. The blood tests will screen for things such as anemia, abnormal blood chemical levels, or high or low blood sugar levels. Generally, the healthcare provider will also order a brain scan, which will be either in the form of a computer-assisted tomography (CAT) scan or magnetic resonance imaging (MRI). These basic tests are commonly done to make a correct diagnosis. As you can see, this testing requires more than the usual 15–20 minute office visit! Approved testing centers are available across the USA and in other countries. These approved centers provide a standard diagnostic evaluation that meets well-accepted guidelines for the assessment. Additional psychological tests may be given in these national testing centers to identify exactly what disorder is causing the mental and memory symptoms. More intensive examinations, such as a spinal tap or positron emission tomography (PET) scan, may also be given. These additional tests take more time, but help to assure us that the correct diagnosis has been reached.

Just as physical disorders can cause changes in mental ability and memory, medications taken to treat other illnesses can actually cause these symptoms. The diagnostic evaluation should include a review of medications you are currently taking. Often, changing or stopping a medication can reduce your symptoms. This change can occur without increasing your risk of a decline in your physical health. A thorough diagnostic evaluation results in a correct diagnosis about 90 percent of the time. New tests are now available that will increase the accuracy of the diagnoses to even more than 90 percent.

You and your spouse or supportive family member may need to be assertive to assure you receive a thorough and appropriate diagnostic evaluation. It is not uncommon for healthcare providers to dismiss symptoms of progressive memory loss as just “normal aging.” Often, you and your family members may know that what you are experiencing is not “normal,” but is more problematic. One wife of a member of my support group for people with early-stage memory loss recounted her frustration at obtaining a correct diagnosis for her husband, Ray. Ray’s internist was not “tuned in” to dementia or other causes of memory loss. Each time Ray visited the internist, he would give Ray the basic10-item Mini-Mental State Examination (MMSE), which Ray completed accurately. The doctor then felt he had no need for a further evaluation or for treatment for Ray’s symptoms. This delay in receiving an accurate diagnosis resulted in a delay in starting the right medications for Ray’s disease. Although we want to trust that every healthcare provider understands memory loss, this may not be the case. Assertive action and questioning by you and your family may be necessary to assure a complete assessment and an accurate diagnosis is reached.

Responses to the diagnosis

The process of obtaining an accurate diagnosis for the cause of progressive memory loss can actually be positive for the person. Well-trained and sensitive healthcare providers can help you feel at ease during the evaluation. You may even find the evaluation interesting. In some cases, however, the evaluation can be a less positive experience. Knowing what to expect, however, can prepare you for some possible negative emotions and responses. For example, some terms used during the diagnostic evaluation may be difficult for you to hear. Terms such as “victim,” “sufferer,” or “demented” are dehumanizing. Hearing these terms may cause you to have a negative emotional response. These terms also place you in a position where you feel as if you are being put upon rather than having any control over what is happening to you. Sadly, these terms are still used both in the diagnostic evaluation and in written information about the disease. If you feel the diagnostic process was difficult or impersonal, you are not alone. Studies have shown that very few people are satisfied with their diagnostic evaluation. Some people have described it as being overly negative. Some physicians don’t discuss what can be done to treat something like dementia or progressive memory loss. Instead, the disease is viewed as a condition of old age. When medications are prescribed, healthcare providers may fail to fully describe the side effects and benefits of the drugs. Understanding how the drugs work and possible benefits is important as many people get discouraged when they have side effects. If you do not know how to manage side effects or understand the benefits of the medications, you may decide to stop taking medications that can provide positive results.

Often, during the diagnostic evaluation healthcare providers might address their questions or explanations to a family member rather than to you. The lack of opportunity to be heard during the diagnostic testing may increase your frustration. Being devalued in this way may contribute to your negative responses to the experience. Although it is important for healthcare providers to talk to family members, you should be included in the conversation. Your input and responses should be obtained throughout the examination. You should also be informed of what tests are being done and why. This information will help you be more comfortable throughout the evaluation.

A very common response to the diagnosis is one of shock and disbelief. Members of my support group have described responses such as, “It has taken me years to get used to the idea of having this disease” or “I couldn’t believe it was true until the doctor said it. I really didn’t feel any different than I had before.” Some describe their responses in physical terms, such as feeling as if someone “dropped a brick on my head.” One woman in my support group described the process as being extremely threatening and dehumanizing. Students were present during the evaluation, although no one asked her permission to allow student observers. She felt that this contributed to her feelings of loss of control and powerlessness. She also felt that her privacy was invaded. Another person in my support group said that she received the diagnosis from her physician over the phone—something that should not happen in today’s healthcare system. Negative responses to the diagnostic evaluation often cannot be prevented. The benefits from receiving an accurate diagnosis, however, should outweigh the negative parts of the evaluation.

Ideally, the diagnostic evaluation will be conducted by a highly skilled and knowledgeable healthcare provider. Often, this provider is a specialist such as a neurologist or geriatric specialist. Physicians in other specialties may have the knowledge and experience needed to carry out a thorough evaluation. Other healthcare providers, such as advanced practice nurses and physician’s assistants, may also be highly skilled in the diagnostic process. Generally, health providers from different fields work as a team to assure a thorough and accurate diagnostic evaluation. For example, a psychologist may conduct a screening for depression while a neurologist may do the assessment of mental functioning and memory. In the ideal diagnostic evaluation, you will have time to ask questions at every step in the process. While a highly skilled healthcare provider is important, it is also essential that the diagnosis be carried out in a humane and non-threatening manner. Approved diagnostic centers use professionals from different specialties to carry out the diagnostic evaluation. You may learn about these centers by contacting your local Alzheimer’s Association in the USA or the Alzheimer’s Society in Canada and specialty groups in other countries.

Following the diagnostic evaluation, the findings are often shared in a family conference. It is helpful for you and your family members to hear the same information and have the opportunity to ask questions. During this conference, the healthcare provider may talk with you about what to expect in your future. Also, treatment options should be carefully explained especially the medication and non-medication treatments that are available. Opportunities to participate in research studies may also be offered to you at this time. Support services may be described. These services can include things such as support groups or education, and therapies such as cognitive or behavioral therapy. Participating in wellness programs such as exercise, creative activities, and social events can also provide positive benefits. These wellness programs are described in a later chapter in this book. Generally, openness and honesty about your treatment choices leads to the best outcomes for you and your family.

As the person most affected by the diagnosis, it is your right to be involved in your care and decision-making, as long as you are able. Understanding what the disease means and what to expect in the future allows you to speak for yourself. Knowing what to expect allows you to make more informed decisions about what you want to do today and in your future. You may also take positive actions to protect your own quality of life. In addition to giving you the information you need to plan for your future, other positive responses to the diagnosis have been expressed. Some people are relieved to finally understand their symptoms and say things such as, “Now I understand why I felt the way I did.” Others have been grateful to know that they are not “contagious” and that their symptoms will not transfer to their family members. Understanding the disease and its effects on you can provide you with knowledge and insight into your symptoms, allowing you to move on to the next step in managing the disease.

The acceptance of the diagnosis for some is not totally negative. Some people with progressive memory loss talk a good deal about past positive times. Others find reassurance in the close relationships and love they receive from important people in their lives. Some learn to accept the loss of abilities inherent in memory loss. Instead of asking “Why me?” some cherish the good parts of their lives both in the present and in the past. Often, it is easy to focus on the negative when receiving such a life-changing diagnosis. A totally negative view, however, may prevent you from enjoying and valuing the positive parts of your life that are ahead.

What next: informing others of the diagnosis

Early in most diseases that cause progressive memory loss, individuals with the diagnosis can function and perform much as they have in the past. As outward appearance is not changed, the person can carry on much as they have in the past, especially during brief encounters. In fact, many individuals describe how they cover up their symptoms. People with memory loss often fear rejection or undue sympathy from others if the diagnosis is revealed. Those in my support group have described some fairly elaborate strategies they developed to succeed in social situations. These cover-up strategies prevent them from telling others of the diagnosis—at least for a while. However, the energy and concentration required to cover up symptoms will eventually become tiring. In fact, some people will stop going out socially owing to their fear that they will no longer be able to carry out their cover up with success. Covering or hiding your symptoms may be successful for a short time. However, the long-term result may be less energy and eventual withdrawal from interactions with others. Being open and honest with others about the diagnosis is a positive alternative that you may want to consider to prevent negative outcomes.

Positive results can come from giving your spouse or other family members permission to share your diagnosis with others. You may set limits on whom you are willing to share the diagnosis with. Being open and honest about your wishes may make it easier for family members to ensure your needs are met while allowing them to maintain social relationships with others. By sharing the diagnosis with trusted friends and family members, you will allow your family members more freedom while you surround yourself with caring people.

Stories of sharing the diagnosis

Below are the stories of two people who were diagnosed with Alzheimer’s disease. Both were healthy and active men in their early seventies. One, Dale, decided to share his diagnosis with family members and friends, with positive results. The second man, Robert, kept his diagnosis a secret for a long as possible, with less positive results.

Dale’s story

Dale was a retired professor of theology who had taught at a local seminary for most of his career. He was well known and loved by the community, including a large group of former students and active pastors. Although Dale had held a prestigious position throughout most of his life, he decided to be open about his diagnosis of Alzheimer’s disease. His wife assisted him in writing a letter to his trusted colleagues, friends, and family members. In some cases, Dale and his wife went to dinner or invited friends to their home to share the diagnosis. Throughout this time, Dale was constantly pleased by the understanding he received from those who learned of his diagnosis. Dale experienced a sense of prayerful support from those around him. This support and understanding allowed Dale to remain socially active without fear of embarrassment or a need to cover up his symptoms. This support provided Dale and his wife comfort and pleasure through the years after his diagnosis.

George’s story

George lived in a small farming community where he had raised his family and lived most of his life. George was active in a number of different community groups and held some leadership roles in his church. He was a very social person, and enjoyed dancing and sharing his humor with others. Because George lived in a small town, he was also fearful of new...