As it is intended to be read by the persons themselves, this effectively limits it to early-stage patients. However, caregivers could also benefit from reading this book and adapting ideas. Rather than dwell too much on the process of memory loss per se, the authors concentrate on what might be broadly defined as the lifestyle associated with progressive memory loss—personhood, social interaction, dealing with the stigma, and maintaining a healthy lifestyle. There is also a chapter on non-medication approaches to cope with the condition. In general, the advice given is sensible and practical.
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If you give them suggestions, they will often be pleased that they can assist in some way. Any traumatic event, such as a diagnosis of progressive memory loss, can alter relationships. In some cases, the new challenges in a relationship can bring out the best in people.
You may find that you are actually closer to some relatives and friends than you were before your diagnosis. But we have fun. We laugh a lot. We enjoy our time together more than we ever did before. Now my son comes to see me every week. We fish together most of the day. Sometimes we talk. Sometimes we just fish. But we both enjoy being together. Being open and honest about the diagnosis allows for these positive outcomes as well as the negative ones.
Your time and energy will be much better spent if you focus on those with whom you find joy and comfort. Interventions to assist with acceptance of the diagnosis Support groups Support groups for people with progressive memory loss are becoming more available. These groups serve those with the diagnosis, rather than family members. The groups are designed to provide emotional and psychological support, education, and a place to share common concerns. Groups generally consist of 10—15 individuals with memory loss and professional leaders. Confidentiality is expected so that participants can feel free to share information and experiences openly and honestly.
The frequency with which the group meets varies, generally from once a week to twice a month. Participation in a support group is especially helpful after the diagnosis. This is the time when you have many questions and are attempting to adapt to the challenges inherent in any chronic illness. People attending support groups tend to identify quickly with the other group members. Group members tend to be very empathetic with one another, having faced similar or like concerns.
They are also excellent resources. Each person manages their symptoms and challenges in different ways. Therefore, the collective wisdom of the group can provide helpful guidance. However, he did know which day was the day for his support group meeting. The group had become such a part of his life that he instinctively knew the day the meeting would be held.
Even with memory loss, group members will ask about one another if someone is missing—the members come to mean so much to one another. Often, other groups will form with members of the support group. For example, group members have begun to meet for meals around special holidays or events. This extension of the group allows for added support while providing fun activities that are comfortable. Being part of a support group is an excellent way to help you as you accept your diagnosis of progressive memory loss.
Friendship and social groups One mistake many people make when diagnosed with progressive memory loss is to give up too much, too soon. As described before, you may find yourself wanting to withdraw from groups or social events for fear that you will embarrass yourself. Withdrawing may seem to be a safe way of managing your symptoms and protecting your self-esteem.
Also, most adults want to maintain their independence—at any cost. If you are unable to drive, you may choose to stay home rather than ask someone to give you a ride. One the other hand, you have probably been a part of some groups or activities that have meant a lot to you. The people that make up these groups and other close friends may be a big part of your social circle. Giving up these friendships and activities may appear to be the easiest path.
However, the long-term effects of withdrawing from friends and social groups may leave you feeling lonely, sad, and even depressed. Research has shown that the more a person with progressive memory loss stays involved in past activities, the better are the long-term outcomes. While some friends may disappoint or hurt you, other friends will continue to be sources of comfort and companionship.
You can, however, enjoy and continue to be part of groups that understand and welcome you. Your true friends will find ways to be with you that are enjoyable for you both. For example, a single woman in our support group took vacations with a lifelong friend each year—traveling around miles to the east coast. When she felt like the trip was too difficult, her friend found vacation spots that were much closer to home. In this way, the dear friends were able to continue their yearly vacations. Friends and close family members will want to continue to be part of your life.
Many will find ways to make it possible for you to continue doing the things you love. At various times, I have asked the members of our support group what they would like most to tell their friends and family members about themselves. I am the same person that I was before the diagnosis. Knowing how you feel allows them to feel more comfortable, making your time together more positive.
Being open and honest with the important people in your life allows you to stay involved with the people and activities that mean the most. Treating depression Despite your best efforts, you may find yourself feeling sad or depressed about your diagnosis. In fact, depression is generally more of a concern. You may feel at first that you should handle your sadness yourself—that your feelings are in your control.
However, if you notice that your sadness affects how you live your everyday life, then you might want to seek professional help. Extreme sadness or depression can affect many parts of your everyday functioning, such as your sleep, appetite, energy level, willingness to be with others, or ability to think clearly and make decisions. You may also believe that these symptoms are part of the diagnosis of progressive memory loss. In fact, you can have a depression in addition to progressive memory loss. However, if the depression is treated, your symptoms will be lessened.
Fewer symptoms allow you to function better. Some people with progressive memory loss think that being sad or depressed goes along with their disease. Although about 50 percent of those with memory loss will have some depression, depression is not considered to be a normal part of the condition. The depression should be treated. Your physician or primary healthcare provider may be the place to start. Your physician may elect to treat you or to refer you to a specialist, usually a psychologist or psychiatrist.
Several treatment options are available. Successful treatment will result in an improved mood. The symptoms that go along with depression should also be relieved. Even though you still may feel sad at times, the sadness you will feel will not be as severe as depression. The normal sadness that goes along with adjusting to any chronic illness will also not affect your functioning as much as depression.
Treating depression allows you to manage your everyday life more positively, increasing your quality of life. Planning for the future: threat or challenge? For many people, the diagnosis of progressive memory loss comes at a time in their life when they had planned for a rewarding and happy retirement. You may have planned to do those things you had always wanted to do and never had time for before. Then, suddenly, a diagnosis you could never imagine happens to you.
When this negative response occurs, the diagnosis is viewed as a threat. An alternative response is to view the diagnosis as a challenge. Seeing the challenges in the diagnosis allows you to respond in an entirely different way. Instead of being angry and discouraged, you will find yourself problem-solving and planning for your future in a different way. The diagnosis of progressive memory loss does not mean that your future plans cannot be fulfilled. The diagnosis more often means that you will need to do some things differently, adapting your activities to your abilities.
Viewing the diagnosis as a challenge allows you to proceed with life in a more positive, productive way. Research on coping with stress tells us that most people will respond in one of these two ways to a stressful event. People will either see the stressful event as a threat or challenge. Certainly, receiving a diagnosis of progressive memory loss is stressful. Receiving the diagnosis is also something you have no control over. How you respond to that stress is in your control, however. You can decide to view the diagnosis as either a threat or challenge.
Viewing the diagnosis as a challenge allows you to go on with your life in a much more positive way than if you choose to view the diagnosis as a threat. Viewing the diagnosis as a challenge does not mean, of course, that you will have an easy path to follow. I have often told the people in our support group that they are the bravest people I know. The journey of progressive memory loss or dementia may not be easy. However, the journey may be rewarding at times.
The journey can also be filled with the people and activities you love and value the most. These changes can make you feel uncertain about your future. This uncertainty makes it hard to imagine what you will be like in the future—affecting your sense of personhood. When personhood is maintained, you may continue to have a high quality of life, even with changing abilities and uncertainty. Kitwood views personhood as much more than the ability to remember. In other words, each one of us is defined by much more than our thinking or reasoning ability. In this definition, personhood is defined by our relationships, our social being, and our ability to feel for and respond to others.
Personhood implies recognition from others, respect, and mutual trust. Using this definition, it is easy to see how personhood can be maintained, even with a disease that can impair memory or thinking ability. Your ability to relate to others and to respond to others in loving and caring ways can remain a part of who you are as a person. Other individuals with progressive memory loss or dementia have written about how they experience threats to their personhood.
Dianne also describes her desire to hold on to a sense of herself and her dignity, despite the disease diagnosis. She says: If I am no longer a woman, why do I still feel like one? If I am no longer worth holding, why do I crave it? If I am no longer sensual, why do I enjoy the soft texture of silk against my skin? If I am no longer sensitive, why do moving song lyrics strike a responsive chord in me? McGowin, , p. This awareness can assist those with memory loss to keep a sense of personhood, as they stay in touch with their feelings, desires, and values. When I make a blunder, I tend to get defensive about it.
I have a sense of shame for not knowing what I should have known. This need for normalcy is strong. What is normal for any person can assist in defining their continuing personhood. Although certain skills and abilities may change with the disease, the need for normalcy and an enduring sense of personhood remains strong.
This chapter focuses on how your sense of self or personhood can be affected by your diagnosis. Some interventions will be described to give you ways to help maintain your sense of self. As your self-esteem can be affected by a loss of self and negative aspects of progressive memory loss, we describe ways to maintain your self-esteem.
The purpose of this chapter is to provide you with different approaches to minimize the effects of the disease on your view of self. By assisting you to maintain a positive sense of personhood, a higher quality of life is possible. How personhood is affected by progressive memory loss Personhood can be influenced by a number of changes that go along with a diagnosis of progressive memory loss. Changes often occur in the social environment in which you interact. How others respond to you as a person with memory loss can have a powerful effect on your sense of personhood and self-esteem.
As you interact with others, if they tend to be uncomfortable or focus on losses, it will be more difficult for you to feel positive about yourself. These negative interactions and loss of previous friendships make it difficult to focus on the positive aspects of yourself and the strengths that you retain.
In this way, the social environment is a powerful force in how you maintain your sense of personhood. The degree to which you are able to stay positive about yourself, to some extent, is dictated by the healthy response of others. In this sense, your personhood is not so much affected by the disease as by the social situations in which you find yourself and the responses of those with whom you interact. A second aspect of progressive memory loss that affects personhood is a loss of abilities.
One effect of progressive memory loss or dementia is a loss of ability to do some tasks and previous role functions. For example, you may have always been the person in your family to manage the finances, schedule activities, or drive when traveling. The effects of the disease on the brain may cause you to lose some ability to carry out tasks of this type. So often, members of my support group will describe how these losses impact their self-esteem and personhood. One member continually describes himself as feeling useless as he is no longer able to drive his wife as he had done for many years.
A loss of ability can cause you to change how you view yourself as a person. Also, loss of ability can cause you to feel more dependent on others—a feeling most of us resist during most of our adolescent and adult lives. Later in this chapter some strategies to lessen the effects of loss on your sense of self will be described.
A third effect of the disease diagnosis on personhood is loss of control. Changes in your social status and abilities are often out of your direct control. You may then begin to sense an overall loss of control over your life. This loss of control can be both frustrating and demoralizing for you. As adults, we like to have control over our daily lives, including our schedules, routines, and activities.
With progressive memory loss, well-meaning spouses and family members may assume responsibility for tasks you were used to doing—a reversal of how you are accustomed to functioning! While you may want and need assistance at times, you may also find yourself resenting someone else doing something you enjoyed and have done for most of your adult life. Most of all, you will probably want things to be normal—to have control over how your life functions. No longer being able to control events in your daily life may leave you with a general sense of loss of personhood and a need to redefine normalcy.
As you continue to be a social person and relate to others, you may continue to be included in the everyday lives of those around you. Your presence will be valued and desired. We know from research that people with progressive memory loss are most likely to hold on to the skills and knowledge that they used most in their life. These skills and knowledge are different for each person, and help to define how each individual differs from the next. Keeping a positive sense of personhood also helps you to withstand the effects of the disease on your everyday functioning.
If you know who you are in relation to others and have a positive view of yourself, you are more likely to adapt to these changes in a positive way. In other words, maintained personhood means more than just being happier. Maintaining your personhood can help you manage the effects of your disease in a positive way—leading to improved quality of life for both you and those you love. In this chapter some actions or interventions will be described to help you preserve your sense of personhood. First, a true story of retained personhood will be described, followed by a true story of a situation where the sense of personhood was lost.
The stories include examples of ways to maintain personhood. During this time, this independent gentleman, John, has maintained involvement in many of the retired-military activities he enjoyed prior to his diagnosis. Even after he lost his ability to drive, John learned to use the public transportation system to attend meetings and other veteran-related activities. When it came time to move into an assisted living facility, John was active in visiting the different facilities. By visiting each facility himself, John was able to let his children know his preferences—based on first-hand knowledge.
From his residence, John continued to remain active in veteran affairs through his writing of letters to legislators and to the editor of the local newspaper. He also continued to participate in church-related activities, allowing him the religious support and expression he had enjoyed throughout his life. By keeping involved and active in previous roles, John was able to maintain his sense of himself—as a veteran, as a church member, as leader of his family, and as an active member of the community.
Staying engaged also allowed John to maintain his sense of control over his life and the normalcy he desired. Several things can be learned from this story. By using many of the interventions described later in this chapter, John was able to keep a sense of who he was as a person. John was active and took some responsibility for his own welfare.
He was able to look at what he valued most about his life and he then designed ways to keep those parts of his life active and alive. John was able to maintain a positive outlook as he was able to keep his sense of personhood. Ruth was a widow who continued to live in the small town where she and her husband had raised their children and later retired. Ruth gave in to their suggestions, although she really wanted to live in the small town where she and her husband had raised their family, where she was involved in church, and where most of her friends lived.
Although both her children wanted to spend time with Ruth, they were employed and had little room in their homes for another person. So, the solution was to have Ruth spend three months with one child and then three months with the other—alternating between the two homes. With this arrangement, Ruth was unable to continue in any of the activities she once enjoyed. She soon lost contact with old friends.
By going from one home to the other, Ruth was not able to establish a space she could call her own. Also, as Ruth lost her ability to care for herself, she began to feel as if she was a burden to both children. Ruth experienced a sense of total loss of control over her life. She also lost her sense of what was normal for her, as her new lifestyle was very different from how she had functioned in the past. Even when Ruth could function very well, she became discouraged about her situation, often referring to herself as a burden and longing for the life she had known.
The lack of opportunity for Ruth to engage in previous activities contributed to her loss of personhood. Constantly moving between the homes of her two children prevented Ruth from establishing herself in new relationships. Without contact with past friends, positive interactions, and control over her living situation, Ruth was unable to maintain a positive view of herself.
Several interventions and self-care actions will be described to assist you to maintain your sense of self.
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These interventions will also assist you in keeping a positive view of yourself and to focus on your abilities. Managing negative thoughts and responses One way to help maintain self-esteem is to avoid becoming habitually negative about yourself. Often, when we encounter negative responses from others, we tend to respond negatively ourselves. This negative emotional response can eventually result in distorted thinking—or an overly negative view of ourselves. For example, someone in your family may have asked you to pick up something on your way home from a meeting or to stop and get something for them while you were out.
You may have totally forgotten to commit this to memory and because your memory is not as good as before it may have more easily slipped your mind. You might think this example is an exaggeration of how individuals with memory loss really respond. However, this negative response happens often, especially when you are adjusting to the diagnosis and memory loss. You may develop a negative view of yourself because of this overgeneralization. Some simple strategies will help you to keep from allowing these small incidents from making you feel negative about yourself.
You can use these strategies whenever you find yourself feeling negative, exaggerating the negative emotions you feel, or thinking that one negative response means you are incompetent. Using these strategies will assist you in maintaining a positive view of yourself, as well as your personhood. Avoid focusing on the negative One way to deal with your negative responses is to be more objective when mistakes happen—and they will happen. If you make a small mistake, it is helpful to be as objective as you can about it.
- Advanced Communication and Networking: Third International Conference, ACN 2011, Brno, Czech Republic, August 15-17, 2011. Proceedings;
- Bubonic Panic: When Plague Invaded America?
- A personal guide to living with progressive memory loss, Sandy Burgener and Prudence Twigg.
- A Guide to Marxs Capital Vols I-III?
- The Scientists: A Family Romance?
- A personal guide to living with progressive memory loss.
Try to think about what happened realistically. I was focusing on getting where I wanted to go and back home safely. So it was probably not realistic for me to expect myself to remember one more thing. Being more objective about what happened can keep you from thinking that if one thing goes wrong, then everything is negative. More objective thinking will help you not blame yourself or feel overly negative. Others may tend to blame you or put you in a position where you feel responsible when you do not live up to their expectations.
A very real example of this was shared in our support group. One very independent woman in her mid-sixties, Jane, described how her son made her feel in a recent telephone conversation. The son called a couple days later and asked Jane if she had gotten the bus pass. How could you have forgotten? She was also dreading the next time she was to talk with her son, fearing she would say something wrong. Avoid blaming yourself for things you cannot control One response that happens after a diagnosis of progressive memory loss is the tendency to blame yourself when things do not go well.
In the example described above, the support group helped Jane to see that her forgetfulness was not her fault. She could not control the memory loss. Also, if Jane did not think to write a reminder to herself, this may have been caused by something that distracted her at the time. If you find you blame yourself when you forget or when things go wrong, try to be realistic about what you expect of yourself. If the effects of the disease have contributed to a negative outcome, then the outcome truly is not your fault. Avoiding blaming yourself for things you cannot control will help you keep a positive and more realistic view of yourself.
This view will also help you maintain your sense of personhood. Cognitive-behavioral therapies Cognitive-behavioral therapies are used often to help maintain personhood with progressive memory loss. Linda Teri and colleagues Teri and Gallagher-Thompson have used these therapies since the early s to help manage the negative responses to the disease. Cognitive therapies help people with progressive memory loss to correct exaggerated negative thoughts and replace them with more accurate, positive thinking. Cognitive therapists assist those with memory loss to view negative interactions in a more realistic way.
The behavioral therapies assist people with memory loss to stay active in positive and pleasant experiences. By focusing on what you have enjoyed in the past, behavioral therapies help you identify what activities are important for you to continue. This combined therapy then assists with maintaining personhood by helping you stay active and involved with positive activities, while decreasing your negative feelings about yourself. Cognitive-behavioral therapies are also useful for identifying your strengths and abilities. For example, many people with memory loss feel guilty if they use lists or cues as reminders of things to do or events that they are likely to forget.
Cognitive-behavioral therapies help you see that using lists or cues is nothing to feel guilty about, but is a positive way to function at the highest level possible. Suggestions or strategies are often offered to help you avoid situations that may be negative. In the group, you may rehearse interactions with others that you think might be difficult for you. This rehearsal helps you prepare for a difficult situation, and possibly prevent a negative outcome. To help you keep a more positive and realistic view of yourself, you might be asked to list your positive traits or characteristics.
While it may be difficult for you to think positively about yourself, it is important to your personhood to focus on the positive aspects of who you are. When you start listing your positive qualities, you will be more easily reminded that you have a number of good traits. Then, when you tend to overgeneralize or blame yourself when things go wrong, you will have a positive reminder of your good qualities to balance any negative feelings about yourself. If you are interested in being part of a cognitive-behavioral therapy group, your healthcare provider may refer you to a professional who conducts these therapies.
Cognitive-behavioral therapies can be especially helpful as you adjust to the disease diagnosis and changing abilities. One note here: some healthcare providers mistakenly believe that individuals with progressive memory loss or dementia cannot benefit from this therapy or that insurance programs, such as Medicare, will not help pay for this therapy.
A qualified therapist will inform you if you cannot benefit from cognitive-behavioral therapy. You or your family member should ask for an evaluation by a therapist before allowing anyone to conclude that you cannot benefit from it. Setting yourself up for success Another approach to maintaining personhood and decreasing negative feelings is to arrange interactions and social situations so the best outcome will result. When you think about the social situations in which you will take part, identify the demands that these situations make on you. Once you realize what a situation might require, you can then arrange to take part in interactions in a positive way.
For example, if you have difficulty following a conversation when there are several people talking at the same time, you may want to avoid being part of a large group of people. Instead, look for small groups of only one or two people and join a small group for conversation. In this way, you are more likely to follow the conversation and respond appropriately.
If you are afraid you will forget names, write the names of the people you know will be present at a social event on a piece of paper before the event. You can also identify social situations that involve activities in which you will do well. For example, many people with memory loss have played bridge all of their life. With memory loss, playing such a complicated game may be a challenge for you. If playing a card game is important to you as a person, however, you may want to join a different group that plays a less complicated card game.
Setting yourself up for success allows you to continue activities that define your personhood. If success is more likely to occur, you will protect yourself from negative feelings.
A number of different ways are possible to help ensure success, depending upon your strengths and the activities essential to your personhood. Often, family members and friends tend to correct a mistake or point out errors in your words or actions. We want to hear what you have to say. Validation allows you the freedom to be yourself in an interaction.
The person with whom you are interacting also has the benefit of learning more about you by giving you the chance to express your thoughts and feelings. Validating interactions require the other person to understand the process and be willing to use this positive method of interacting. Close and loving people in your life may welcome the chance to learn about this positive way of interacting once they understand the benefit for both themselves and you. Validating interactions can help you keep a sense of personhood and create positive feelings—outcomes that are well worth the effort needed to learn how to use this positive way of interacting.
Maintaining relationships Early in this chapter, personhood was defined as including relationships with others. Keeping important and close relationships alive and positive can help maintain your own personhood. Positive relationships provide you with comfort and reassurance. Comfort carries with it a sense of closeness. Comfort can ease the initial distress that occurs with a diagnosis of progressive memory loss. Close and positive relationships also provide you with a sense of attachment to others. The need for attachment is universal. We all need to be part of a larger group: a family, a friendship, or social network that has meaning to your personhood.
Continuing these relationships is a very powerful way to support who you are as a person. Close relationships can be reassuring as you go through changes caused by progressive memory loss. Relationships provide a safety net for some of the losses that you might experience. A sense of inclusion is also part of relationships.
With any disease, continuing to feel a part of everyday activities provides positive support for your personhood—to be included in a way consistent with your past. When this need for inclusion is met, your sense of who you are as a person is easier to maintain as you identify with your place in the group.
The importance of relationships to your personhood is mentioned here to help you be aware of how essential relationships are to maintaining personhood. Your ability to love and care for others is a valued part of yourself that will need to be expressed throughout your disease. Final thoughts The process of growing older results in every older adult being unique. The process of progressive memory loss is also unique for every person.
However, some common needs exist for those with progressive memory loss. We began this chapter by describing how Thomas Kitwood a, b defines personhood. Kitwood also described the basic needs of people with progressive memory loss. Meeting these basic needs will assist you in keeping a positive and enduring sense of personhood. The six basic needs described by Dr. Kitwood include the following. Attachment: Attachment includes a sense of belonging and forming strong bonds with others.
Attachments provide a safety net for people with progressive memory loss and allow you to function at your best. Inclusion: Each person with progressive memory loss continues to need to be part of a larger group. Being part of a group allows you to relate to others, expand and grow, and to combat the loneliness that often goes along with memory loss. Occupation: Even in the presence of progressive memory loss, people need to be engaged in activities that are worthwhile and rewarding. Activities that were rewarding or positive in the past continue to be a valued part of your life.
Activities can involve both work and play. The important aspect of occupation is being engaged in a way that decreases boredom and the desire to withdraw. Identity: Your identity includes both the present who you are now and a sense of continuity with the past. Others support your identity. You also have your own sense of who you are and what is important in your life.
Your sense of identity helps you recognize how you are unique as a person. Comfort can help you deal with the everyday anxieties that often go along with the changes you may experience. Comfort can be found in closeness with others and the caring they provide. Comfort can also be found in knowing who you are and keeping a sense of your self alive and well. Love: The final need of individuals with progressive memory loss is love. This need can be fulfilled in part by meeting the other needs described above.
Love given to you allows you to feel valued and have a general sense of self-worth. Love that you share with others gives meaning to your life and increases your self-worth. This sense of self-worth will support your personhood in positive ways. These basic needs are the same for all people, with or without progressive memory loss.
The interventions and actions we have described in this chapter will assist you in meeting these basic needs. As your needs are met, your self-perceptions will be more positive. Your sense of personhood will also be maintained at higher levels. An enduring sense of personhood will provide meaning and support as you manage the effects of progressive memory loss. A simple guide to staying in touch with your personhood is found at the end of this chapter. You may use this guide to remind you daily of the ways you can stay positive about who you are as a person. Design activities based on your abilities.
Although some of your abilities may be altered, most of your roles will still be important to your sense of self. Rarely did the person describe him- or herself in any terms other than the roles they had filled much of their lives. These responses speak of the importance of roles to each person, even with changes in mental ability and memory loss.
The roles you have assumed previously or might continue are closely tied to your sense of who you are. The important roles in your life also help you have a continuous link to your past. Having this connection to your past can help maintain memory and a sense of who you are. For example, if you have always been a favorite aunt or uncle, your relatives will always recall how you functioned as aunt or uncle. They will continue to see you in this role, based on how you have lived it in the past. Roles also help define how you continue to relate to others.
How you have fulfilled your role as a parent, for example, may define how you continue to interact with your children.