THE REALITYOF MEMORY LOSS AND
Communicating Beyond Language
When our language skills are intact, we can be the life of the party and at the top of our game. If our language skills are diminished through an accident or illness, we can find ourselves sitting on the sideline of life needing someone to assist us in communicating our needs.
The dictionary defines communication as something that communicates information from one person to another. We are all aware of how good and bad communication can affect our lives and relationships. Often, communication is judged solely on words spoken, but in fact, communication can take many forms. Facial expressions, human touch and body language are some of the most effective ways to communicate cues and feelings, especially when one suffers from dementia
There have been recent findings that show some people with late stage dementia are able to retain more language than was previously thought possible. Intervention through a wide-range of techniques such as aromatherapy, attention focusing, bright light therapy, cognitive stimulation programs, massage, music, pet therapy, validation, walking, reminiscence, etc. can be helpful in facilitating communication.
What can one do to successfully communicate with their loved one who has dementia? Make sure you have you have effective communication tools such as objects, pictures, pen and paper to support your messages. Also make sure your loved one has their support tools – eyeglasses, dentures and hearing aid(s).
Use the appropriate language level your loved one can understand. You may need to shorten and simplify your message, but remember that talking to them as if they are a child or using baby-talk is not appropriate. Speak in a volume that your loved one can hear and check the timing and pace of your conversation. Slow down and adapt to their pace and timescale rather than expecting them to adapt to yours.
Adjust your attitude. Living with dementia can be frustrating and your loved one may become upset about a communication breakdown. Any edge to your voice or negative body language can be counterproductive to your communication efforts. The environment should also be considered. Time of day, location, familiarity and the number of people surrounding your loved one should be considered. Routines and continuity of care can enhance communication.
It is important that we are given and provide meaningful communication opportunities throughout our lives.
A Dose of Laughter
Research and discussion of alternative therapies in healthcare are at an all time high. Americans spend millions of dollars each year on these alternative methods; and as a result, the Surgeon General has formed a committee to study them. These therapies include such methods as therapeutic touch, massage, the use of herbs and vitamins, and acupuncture to name a few. Most of these therapies can be obtained for a high price. However, there is another therapy which has proven to have positive physiological, psychological and spiritual effects on the body and is basically free with no known negative side effects. This alternative therapy involves the use of laughter.
Researchers studying the side effects of laughter have concluded there are several positive effects on the body in response to laughter. Laughter has been shown to lower blood pressure, reduce stress hormones, increase muscle flexion, and boost the body’s immune system. Laughter also triggers the release of endorphins, the body’s natural painkillers, and produces a sense of well being.
In caring for residents in the early stages of dementia, it would seem that it would be quite easy to introduce laughter. However, for residents with advanced dementia, they may perceive things differently. A funny face may be frightening to these residents and produce a negative response. Jokes may not be understood and, thus, not produce a laugh. To utilize laughter effectively, the staff would have to become truly connected with the residents, their background, behaviors, likes and dislikes and responses to various stimuli. Only then would we know how to reach the residents and allow them the benefits of laughter. This may mean showing videos of the “Honey Mooners,” “The Jackie Gleason Show,” “I Love Lucy” or maybe “Mr. Ed.” Or possibly, within limits, try a little tickling to initiate laughter.
Communicating with Compassion
Dementia can be described as the loss of intellectual functions such as thinking, remembering and reasoning as well as changes in behavior and mood. A person’s daily ability to function becomes difficult, if not impossible. This group of symptoms also may accompany certain diseases such as Alzheimer’s, Huntington’s, Pick’s, and Parkinson’s disease. There are many ways in which you, as the caregiver, can help those living with dementia through their day.
Those with dementia have the same needs as everyone else. The only difference is in how their needs are met. They require:
• Appropriate Stimulation
• To feel secure and value
• To maintain their self-esteem and be treated with dignity and respect
• Allow them to do as much as they can for themselves, but don’t expect them to regain lost skills.
• Break tasks down into small steps that they can accomplish.
• Assess their skills frequently so that you can adjust your expectations and level of help.
• Use your sense of humor. It’s important to have fun together.
• Don’t rush them.
• Keep in mind that the “ability to remember” cannot be forced.
• Don’t take their anger or hostility personally. They may be trying to communicate.
• Be prepared to listen to the same story and answer the same questions more than
once. Be aware that they have no control over their behavior. Their inhibitions,
impulses, control, and judgment have declined.
• Don’t argue. Their ability to reason decreases as the disease progresses.
• Show compassion. They may understand more than they can express.
• Their memories of the past remain intact longer. It’s therapeutic to “remember the good old days” with them.
• Your behavior and emotions affect them. Their moods mirror your frustration with them or your acceptance of them.
• They obtain stability and comfort through structure, routine, and familiarity.
• Reassurance and distraction tactics may help to alleviate their suspicion.
As the caregiver, you’re the one who has patience, compassion, hope and humor. Unfortunately, we cannot stop this awful disease from progressing, from stealing away those whom we cherish, those we love. We can, however, be patient, redirect and distract again, and again.
Communicating with your Doctor
Visits with doctors are becoming increasingly frustrating for both patients and physicians. It seems like there’s never enough time to cover all of the issues that are important during a doctor’s visit. There are a number of things, however, that you and your doctor can do to make more efficient use of your time together.
What should you expect from your doctor? Most physicians try their best to stay on schedule, but unexpected problems may set your physician back and cause delays. While you should not expect this, it is wise to recognize that this is a real possibility and bring a good book or call ahead before you leave for your appointment to see if your physician is running late.
Once in the office, you should expect that your physician has a complete record of your previous visits and the results of all the tests that may have been ordered at that time. You should expect a clear explanation of diagnoses, including the goals of treatment. It is important to understand whether your physician is hoping to cure the disease. If cure is not possible, the goal may be to stabilize a chronic illness so that there will be improvement in your condition or to delay the progression of a chronic disease. If there is no direct treatment available for your diagnosis, then it is important to understand what things can be done to improve your ability to function and meet your day-to-day goals.
Your physician may communicate some or all of this information, but it is common and useful for a physician to rely on a nurse or patient educator to review the information with you to be sure you a have good understanding of what is going on, what you should do and what to expect. You should also expect that your physician is willing to communicate with your family, either directly or through his nurse, to make them aware of the treatment plan.
What can you do to help your physician? First, be on time. Second, lists are good. If you and your family and loved ones can work together to develop a list of your complaints, and have that available when you go in for a visit, this can save time and help assure that the visit focuses on the problems that are causing you the most concern. This is particularly important if you are having any memory complaints. Even without memory problems, a physician’s visit often feels rushed, and it is not unusual for patients to forget issues that were important to them. Always remember to bring all medications, including vitamins, aspirin, over-the-counter medications, and “natural substances,” e.g. herbal medications, with you. A list of surgeries, current medical diagnoses from other physicians you are seeing, and past medical problems are also very helpful.
Finally, feel free to take notes during the visit and ask questions. If time does not seem adequate to go into a full discussion of the problem and the physician’s patient education materials don’t seem to be adequate to explain what’s going on, schedule a follow-up appointment. It may take several visits before your physician clearly understands your diagnosis and what the possible treatments and care plans would be, and it may be several more visits before you and your family fully understand what is possible and how best to proceed.
Enhancing Communication Skills
Adapted from ADVANCE for Speech-Language Pathologists and Audiologists
Knowing what skills are retained as a person progresses through the stages of dementia can help clinicians stabilize patients and maximize their communication. In very early stages, changes are often undetectable but increase as the dementia progresses. Due to the decline in memory, individuals in moderate stages may repeat themselves frequently. Abstract language also begins to decline. Patients will still be able to recall the immediate past, but may have difficulty staying on topic in conversations.
Individuals at the mild level may be able to answer open-ended questions. When this is no longer possible, multiple-choice questions can be employed. People with mild dementia can still follow one-to-two directions. They are able to provide information about familiar objects and they initiate conversation. Many continue to experience lucid moments and express a desire for control over their environment.
With moderate to severe dementia, critical areas of functionality are affected. The visual system remains intact for a while, but the motor system seems to fail in their ability to write and feed themselves. At this time, a switch to finger food would be appropriate. Patients with end-moderate to severe dementia may still introduce themselves, but are unable to follow anything more than a one-step direction.
At the very late stages of dementia, patients might understand pictures but they will probably not know the day and year. They might still answer yes/no questions and some may be able to understand the printed word, but many are no longer verbal. In addition, many experience difficulty in swallowing. Seventy percent of patients with advanced dementia will need a swallowing evaluation. In the final stage of dementia, patients have typically lost almost all independent function.
Oral care is crucial at the end stage. “Studies have shown a direct correlation between being a dependent feeder, having poor oral care and being at extreme risk for aspiration pneumonia,” says Rowe.
Procedural memory often is retained for a longer period than other types of memory. Procedural memories are ingrained routines that are learned throughout life. For example, an individual with late-stage memory loss may not be able to independently brush his or her teeth, but if a caregiver hands the individual a toothbrush with toothpaste applied, he or she may be able to perform the activity. Singing songs is another function of procedural memory that can be used to increase communication.
Entering a New Reality
It is frequently stated amongst caregivers that confusion is one of the most difficult things to manage. Oftentimes, it is our own inability to process the information being offered verbally or non-verbally by those for whom we care that leads to our frustration. What we must learn to do is not always an easy feat, yet one that is imperative if we are to meet the needs of those entrusted to our care. The feat we must accomplish is to step within the reality that is theirs.
What you and I know to be true and accurate is not perceived as such by those who’s thought process has been altered. Their own internal reality and their own set of rules are what govern their thoughts and their behavior. By entering into that realm, we ultimately can provide a more meaningful existence through understanding and the development of a trusting relationship.
But in actuality, by validating these statements and their feelings, we gain access into their reality. These statements are very real to them and we are simply acknowledging that fact. By encouraging a calmer interaction through validation, we gain their trust and can then introduce the simple techniques of redirection and distraction towards a safer topic, one that will calm their troubled thoughts. “Let’s go get a drink while we wait for the bus.” “Your wife has asked for us to watch over you today. She will be back later to see you.” These are all simple statements that broke no argument and will validate their thoughts and feelings.
ALWAYS REMEMBER YOU HAVE MANY OPTIONS, AND WE ARE HERE TO HELP.