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Alzheimer’s Disease By: Megan A. Hodge
Getting Familiar With the Basics of Alzheimer’s Disease
Alzheimer’s Disease • Approximately four million persons in the U. S. have Alzheimer’s disease (AD). Alzheimer’s is a disease of the brain that causes progressive deterioration of brain cells. This loss of brain cells can result in a gradual loss of memory, confusion, difficulties with language, and increasing difficulty with performing everyday tasks like using the telephone or grocery shopping. People with Alzheimer’s can also experience changes in their personalities that may cause them to behave in ways that their families may not fully understand.
Is It A Change In Memory or Alzheimer’s Disease? Some change in memory is normal as we grow older, but the symptoms of Alzheimer’s disease are more than simple lapses in memory. People with Alzheimer’s experience difficulties communicating, learning, thinking and reasoning — problems severe enough to have an impact on an individual's work, social activities and family life. The Alzheimer's Association has developed a checklist of common symptoms to help you recognize the difference between normal agerelated memory changes and possible warning signs of Alzheimer’s disease. There’s no clear-cut line between normal changes and warning signs. It’s always a good idea to check with a doctor if a person’s level of function seems to be changing. The Alzheimer’s Association believes that it is critical for people diagnosed with dementia and their families to receive information, care and support as early as possible.
10 Warning Signs of Alzheimer’s Disease 1. Memory loss. Forgetting recently learned information is one of the most common 2. 3. 4. 5. early signs of dementia. A person begins to forget more often and is unable to recall the information later. What's normal? Forgetting names or appointments occasionally. Difficulty performing familiar tasks. People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game. What's normal? Occasionally forgetting why you came into a room or what you planned to say. Problems with language. People with Alzheimer’s disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find the toothbrush, for example, and instead ask for "that thing for my mouth. ” What's normal? Sometimes having trouble finding the right word. Disorientation to time and place. People with Alzheimer’s disease can become lost in their own neighborhood, forget where they are and how they got there, and not know how to get back home. What's normal? Forgetting the day of the week or where you were going. Poor or decreased judgment. Those with Alzheimer’s may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment, like giving away large sums of money to telemarketers. What's normal? Making a questionable or debatable decision from time to time.
Continued… 6. Problems with abstract thinking. Someone with Alzheimer’s disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are for and how they should be used. What's normal? Finding it challenging to balance a checkbook. 7. Misplacing things. A person with Alzheimer’s disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl. What's normal? Misplacing keys or a wallet temporarily. 8. Changes in mood or behavior. Someone with Alzheimer’s disease may show rapid mood swings – from calm to tears to anger – for no apparent reason. What's normal? Occasionally feeling sad or moody. 9. Changes in personality. The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful or dependent on a family member. What's normal? People’s personalities do change somewhat with age. 10. Loss of initiative. A person with Alzheimer’s disease may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities. What's normal? Sometimes feeling weary of work or social obligations.
Communicating With The Elderly Affected By Alzheimer’s Disease
Communicating With An Aging Parent Communication is skill and art. Skills are specific types of verbal and nonverbal actions that help you get the results you want, including cooperation, joint decision making, and finding solutions to difficult issues. The art part is taking the skills and figuring out how to apply the skills to a specific situation. Your job as a caregiver is to decide what to use and how to use it. When you are talking with aging parents and have some concern about how the communication may go, you are most likely talking about an important topic or an emotionally loaded topic. Important topics may be things such as figuring out where older parents should live, what kinds of help (if any) they need, who needs to know about their finances, what type(s) of health care services they should have, whether or not they have an up to date will or even whether or not someone else should have some legal power to act in their behalf, such as power of attorney.
Continued… Emotionally loaded topics are almost anything that leads to strong emotions being experienced and communicated. In any family, there a specific and unique set of emotionally laden topics, including (but not limited to): who spends the holidays with whom, who is the favored child, who should get possession of various personal items in an estate, who has to take responsibility for care giving, and what is a fair share to be paid for gifts or care by various members of the family. As a caregiver, you undoubtedly have a series of specific issues that you want to communicate about with your older family member. Some of these are emotionally laden, some are not. Some are easy to discuss in your family situation, some are not. Generally, when there is an emotionally laden and important issue, the following guidelines can help you focus your efforts to get the best out of a difficult situation. The situation changes dramatically when the older adult has limitations, including dementia. A dementia patient would need more specific guidelines and principles, some of which will be addressed in a future article in this series. However, many of the principles listed below hold regardless of the cognitive limitations of your older family member.
Do’s and Don’ts When Communicating Think ahead of what you need to get (vs. what you hope to get) from discussions: That is, what is your bottom line? Do you need to get your parent(s) to tell you EVERYTHING about their possessions or do you really need to get them to confer with a competent attorney? Do you need to get your family member into a nursing home or do you need them to be evaluated by a competent agency, physician or other provider who may come up with options that may work for your older relative? Answer the following question (and it’s a very important one): Are you doing this WITH the older adult or FOR them? That is, do they have both a say and veto power in the discussion? If the older relative has veto power, then he or she may disagree with you or even do something you are very uncomfortable with. At the same time, if it is really their decision, then you should not try to coerce or manipulate them into the decision.
Do’s • Think ahead as to when and where to have the conversation. Pick a • • place and time when older relatives can hear what you are saying without family and holiday distractions. I know of individuals who have actually made a special trip to another city to visit their parents just to have an important conversation. Use "I" statements. Literally, this means beginning any declarative sentence with the word "I". This means talking about "My view", "My perception", and especially "My feelings" rather than talking as if you have a corner on the truth and anything your parents says not only contradicts you but is wrong… "I" statements can lead to negotiation and sharing, "You" statements may lead to war. Consider having a mutual ally present when beginning important and emotionally laden discussions. - Having someone who is trusted by both parties may make things easier. Be clear about the topic of discussion with your family member. Give the others time to process and think about what you are presenting. Going too fast can lead to misunderstandings. You may have to have more than one conversation about an emotionally laden topic.
Continued… • Respect the rights of the others to agree and disagree. • Stand your own ground. That is, you can be assertive and clear about • • • your beliefs and your point of view without denying others their rights and own perspectives. Be aware of your own feelings and reactions to the situation and the others involved. Sometimes, this may mean taking time to go over your likely reactions and figuring out how to enhance reactions that might help the conversation move along and, at the same time, find ways to keep inflammatory reactions in check. Practice the conversation with a "coach", someone who can listen to you and let you know how you are coming across. A coach can be a spouse, significant other, family member or friend. If you practice, be sure to ask your coach what behaviors or actions you have that might give the wrong message to your older relative. Be prepared for the discussion to end before you want it to. Make every attempt to treat the discussion as a door opener, that is, an opportunity to get the ball rolling, rather than the time everything has to be decided upon.
Don’ts • Don’t blame others in either word or tone of voice. We often forget that • • • our internal tension or concern may come across as judging others or being defensive, which in turn leads to their not paying attention to our care and thoughts about them. Don’t do all the talking. A rule of thumb is to do occupy no more than ½ of the airtime. It is important to listen and acknowledge the others’ concerns and questions. You don’t have to answer each and every point when it is made. Don’t go in with a fearful attitude, it will become your message. Being clear about your goals and having practiced what you want to say can help decrease anxiety. Don’t overload the table with old issues and hurts. A major mistake made in these conversations is that once the initial point is agreed upon, too much is attempted too quickly. It helps some people to think of their old history as a museum, don’t show all of the items at once, limit your exhibits.
Continued… • Don’t believe that disagreement means someone does not love • • someone else. I would even go so far as to suggest that a parent’s defensiveness (or our own) also does NOT mean that someone does not love someone else. Too often, people mistake defensiveness as a lack of love. Don’t believe that a quick agreement means the others will agree with you after reflection. People may go away from an involved encounter and think things over again, be prepared to revisit tough issues several times. Don’t go in with a "someone has to win" attitude, you are usually working together. People who are naturally competitive may find themselves competing with their aging parents rather than working together even with the best of intentions. One way around this is to be clear that the goal is for the "team" of both of you to figure out what is best for the ENTIRE family
Continued… While this is hardly a complete list of all nuances of family communication, these guidelines may help you evaluate how you want to have discussions as well as be an informal checklist to evaluate how you did after a discussion about an emotionally laden topic. Let’s take a look at an imaginary conversation (with some comments in parentheses about the dos and don’ts). Remember, these guidelines have to be applied by you in your situation. They will potentially take many forms, you have to be the final judge on how to apply these principles and ideas.
Simple Scenario and Dialogue Scenario: An imaginary conversation about where mother is gong to live. Mother is 78, in fairly good health, but has had a few falls and has high blood pressure. She lives alone in the family home, a two story dwelling with all the bedrooms and the bathroom upstairs. The conversation is between daughter, age 45 (with grown children and a husband) and her mother.
Dialogue: • • • Daughter: Mom, there’s something we need to talk about. Mother: What is it dear? Daughter: Well, I’ve been thinking about your house. Mother: Oh? Daughter: Well, the house is where we grew up and everything, but I was hoping we could sell it some time. (Not clear about the topic of discussion) Mother: What? Sell the house? Why would I do that? Where could I live? Daughter: (becoming a little nervous): Mom, you need to think about this before you say that. (blaming) Mother: What do you mean, I don’t think? Daughter: No, mom, it’s just that we want you to have what is best for you, you know. (defensive) Mother: Have you talked to your brother about this? Daughter: Of course not, I mean I should of, I hope he doesn’t get too mad about this. (includes old issues) Mother: Now, now, dear, you two shouldn’t fight.
• • • Daughter: We don’t fight, we don’t even talk. (brings up old topics) Mother: Well, I certainly won’t sell the house if it makes you all upset. Daughter: Mom, I am not upset, it’s just that I find it hard to talk with you about this. (is assertive) Mother: Why, what do you mean? Are you saying I am difficult? Can’t I have my way? Daughter: I’d like to have my way, just for once. (blaming) Mother: You can, but not with my house. Daughter (takes a breath): Mom, I’m sorry, but I really want to talk with you about your home and where you live while things are going OK for you. I care for you, I do not want to fight with you or my brother, I want us to talk together about how you can handle yourself. (assertive, clear about topic) Mother: (reconsiders): OK, I believe you, what do you want to talk about? Daughter: I am concerned about what may happen to you in the future if you stay in the house. (shares real concerns) Mother: What do you mean?
• Daughter: I mean that the house is designed for younger people, with the • • bedrooms and bathroom upstairs. If you fell and had to walk with assistance for any period of time, the house would not be a good place to rehabilitate. (Gives good reasons, is calm) Mother: And, I think, if I had to go into a nursing home, the house might have to go to pay for my care. Daughter: Unless you made plans in advance. Mother: Which I haven’t done. Daughter: So, where should we go from here? (Includes mother in decision) Mother: Well, we should talk to your brother. Maybe I can talk to him first. Then we should talk to someone who knows about these things. Daughter: Thanks, mom, I love you. Mother: I hope so (laughs). I hope you can see how the dos and don’ts of communication can influence how a discussion goes.
More Tips for Communication • • • • Always approach the person from the front, or within his/her line of vision – no surprise appearances Speak in a normal tone of voice and greet the person as you would anyone else Face the person as you talk to him/her Minimize hand movements that approach the other person Avoid a setting with a lot of sensory stimulation, like a big room where many people may be sitting or talking, a high-traffic area or a very noisy place Maintain eye contact and smile. A frown will convey negative feeling s to a person Be respectful of the person’s personal space and observant of his/her reaction as you move closer. Maintain a distance of one to one and a half feet initially If a person is a pacer, walk with him/her, in step with him/her while you talk Use distraction if a situation looks like it may get out of hand. A couple of examples are: if the person is about to hit someone of if he/she is trying to leave the home/facility Use a low-pitched, slow speaking voice which older adults hear best Ask only one question at a time. More than one question will increase confusion Repeat key words if the person does not understand the first time around Nod and smile only if what the person said is understood
Discourse Analysis Experiments That Were Observed Among Alzheimer’s Patients Before and After Intervention
Stevens, King, and Camp Used script and structured question and answer exercises in a group activity increased the amount of verbal interaction among an Alzheimer’s group.
Camp, Foss, O’Hanlon, and Stevens Reported how space retrieval can be used to decrease repetitive questioning and trigger verbal responses that lead to desire future actions. Spaced retrieval is a process and teaching method that requires learners to answer questions about recently presented facts at gradually increasing time intervals. This is believed to engage implict or unconcious memory processes thought to be realitively preserved in Alzheimer’s patients.
Hopper, Bayles, and Tomoeda Measured discourse production in for AD patients before and after an intervention that used toys (dolls and stuffed dogs) as stimuli. Found that there was an increase in the number of information units produced in the presence of the specific stimuli used.
Mahendra, Bayles, and Tomoeda Measured discourse production in four AD subjects before and after an individualized music intervention. Found that there was an increase in the number of information units produced in the presence of the specific stimuli used. Also investigated and found an increase in the ratio of different nouns to total nouns.
Brownell and Joanette Discourse analysis is described as “The basic unit of social communication” says Brownell and Joanette
. Psychosocial and Behavioral Interventions for Alzheimer's Disease Patients
Bender Through cognitive intervention he found that in early dementia, patients may initiate their own reality orientation by using lists and calendars. In later stages, reality orientation is rarely recommended or used since studies have shown that it increases the patients' frustration. Bender described a variant of reality orientation in which he oriented patients to the season of the year rather than to the day of the week by celebrating one event for each season. He reported increased alertness and energy in patients.
Camp, Foss, and Stevens Through cognitive intervention they used techniques borrowed from Montessori schools, such as color coding external memory devices. They used nine different colored coupons to teach prospective memory skills to four patients with dementia. This area holds promise for developing interventions that minimize patients' frustration.
Beck, Heacock, Souder, Baldwin and Mercer Through functional performance intervention they tested independencepromoting strategies that supported retained cognitive and physical abilities and compensated for deficits during hygiene, dressing, grooming, and eating. These strategies include stimulus control, verbal and physical prompting, and physical guidance.
Bonder, Bonnel, Coyne, Rader, Barrick, Sloane, Yankou, Black, Whall, Schnelle, Newman, Fogerty, Jirovec, and Jarvis All helped with the improvement of patients' dressing, eating, bathing, and toileting behaviors. Prompted voiding and scheduled voiding help maintain dryness in selected patients. Prompted voiding involves assessing the patient's dryness and need to void, while scheduled voiding establishes set intervals for trips to the bathroom.
Beck, Modlin, Heithoff, Friedmon, Tappen, Namazi, Gwinupp, and Zadorozny Through functional performance intervention they found that various exercise regimens ranging from simple stretches to scheduled walking and use of stationary bicycles have helped decrease agitation and improve sleep rhythms in patients with mild to moderate dementia.
Buettner Through functional performance interventions he tailored exercise programs to the patients' neurodevelopment level and reported improved physical strength, alertness, and sociability.
Bliwise, Carroll, Lee, Hoch, Reynolds, Houck, van Sormeren, Mirmiran, Swaab, Mishima, Okawa, and Hishikawa Sleep disturbances in dementia contribute significantly to caregiver fatigue, and several interventions have been found to enhance sleep. In an extensive review of the literature, van Someren et al. summarized nonpharmacological treatments for sleep disturbances. Two hours of bright light have decreased agitation and improved sleep patterns, but studies differed on the optimum timing for the increased lighting. They also suggest that maintaining a dark environment at night is essential for optimal sleep but found less evidence that exercise is helpful. An early evening warm bath and limited daytime napping may also enhance nighttime sleep.
Burgio, Scilley, and Hardin Through environmental interventions found that white noise has modestly decreased verbal agitation in some patients. White noise is a continuous, monotonous, soft background noise, such as the sound of a flowing stream, ocean waves, or a hair dryer. They reported a significant decrease in noisiness when nursing home patients listened to nature sounds from a portable tape player and earphones.
Ford, Fox, Fitch, Beck, and Heacock Through environmental interventions they found that lighting intensity apparently affects the dementia patient in several ways. Demonstrated decreased mealtime agitation and increased food consumption when lights in the dining room were dimmed at mealtime. Also, patients with dementia often lose the ability to differentiate similar colors and might not see dark colored food served on a dark plate or a black sock lying on a navy blue bedspread. Thus, colors become successful visual cues when objects and background colors contrast sharply.
Kongable, Buckwalter, and Stolley Through pleasure-inducing interventions they identified 53 events that might induce pleasure in patients with dementia. This list helps guide professionals as they assist families to plan care for their patient. Pet therapy is one example of a pleasure-inducing intervention. Small studies and clinical anecdotes describe the beneficial effects of petting or watching small animals such as dogs and cats. Animals can be part of group or individual sessions.
Casby, Holm, Bright, Gerdner, Swanson, and Aldridge Through pleasure-inducing interventions they found that many therapies should include music to promote acceptance and a sense of belonging. Playing favorite songs and melodies often quiets agitated patients. Studies and anecdotes report that even aphasic dementia patients may be able to sing old songs and dance to past tunes. Additional benefits may include psychological mood improvement, intellectual stimulation of speech and mental processes, physical sensory stimulation, and motor integration.
Special Thanks To: Online Articles UNCC Course Reserves Communication and Aging Second Edition And Especially Ms. Boyd Davis This Has Been A Megan Hodge Presentation