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.
• Companionship.
• To feel secure and valued.
• To maintain their self-esteem and be treated with dignity and respect.
Encourage independence:
• 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.
Be Patient:
• 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.
According to Susan Rowe, MS, CCC-SLP, the best way to reach people in end-stage dementia is through sensory input in terms of touch, taste and hearing. “Make sure their hearing is adequate, and try to be soothing.”
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 whose 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.
“I need the bus schedule so that I can go home.” “My wife must be worried with me being gone so long.” In every day interactions at Silverado, we have all come in contact with these or similar statements. It is disconcerting for any of us to feel that we must “lie” to a resident or to a loved one.
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.
The only redeeming factor with dementia, if there is one to be had, is that by the time they walk from one end of the community to the other, the original intent has been forgotten.
Promoting Opportunities For “Engagement”
Results from a large-scale research project (Mitchell and Kemp, 2000) indicated that social interaction, defined as “engaging” others socially, is one of the best predictors of quality of life in residential care settings. This is a concept that is at the core of our Silverado values and belief systems. Engaging others can be as simple as saying hello, smiling as you make eye contact, or simply giving someone a warm pat on the shoulder as you pass by. These small interactions have the potential to make a large difference.
A few years ago, a state surveyor posed a question as she left one of our Silverado communities following a successful survey. She wanted to know why everyone (staff, families, and residents) appeared so happy. The answer to this question relates directly to the concept of engagement.
We expect all of our associates (staff) to be involved in the lives of our residents. This is accomplished through several different programs and training initiatives. Our “Cheers” program is named after the old “Cheers” television program that begins with a theme song stating, “Sometimes you want to go where everybody knows your name…” While our residents may at times forget where they are, everyone saying hello helps them feel that they are “home.”
Our mentoring program pairs new associates with veterans who share and model this philosophy. Many of our communities have an adopt-a-resident program that pairs non-nursing associates with newly admitted residents. They are simply asked to get to know new residents and become a part of their lives. This model allows all Silverado associates to truly be a part of our “care-treatment” team and to feel a part of our overall mission.
One definition of engagement is to “look with open eyes at the environment around you and then interact accordingly…” We want all of our communities to be living and engaging environments. When this is accomplished, we truly have the ability to make a dramatic and positive impact in the lives of our residents, their families, and our own associates.
The Benefits of a Support Group for Persons with Alzheimer’s Disease
2001 AspenãAdapted from the Alzheimer’s Care Quarterly 2001:2(4) 42-46 publishing
Support groups for persons with Alzheimer’s disease allow participants to meet for confidential discussions in which they are free to share their experiences of living with Alzheimer’s. Sharing can help alleviate the stigma, fear, depression, and isolation that often accompany the disease. The support group meetings also allow for dissemination of information regarding advances in research and treatment, resources, and methods of coping. We have found that support groups for persons diagnosed with Alzheimer’s disease are an invaluable forum for participants to talk about their experiences openly and honestly.
Bill, a 73 year old, married Army Corpsman diagnosed with Alzheimer’s, was having difficulty coping with depression and fear regarding the progression of the disease. He said recently, “The big thing for me was the fear of not knowing what was going to happen, the fright of mental confusion, the fright of what you hear about it (Alzheimer’s), the frightening effect it has on your spouse and your children. Groups like this are survival. I look forward to them and know that I can be here. I’m having less trouble crying and being depressed, which is great. Problems aren’t as drastic as they used to be.”
Sharing with peers instills hope that there are ways to live a meaningful life with Alzheimer’s disease and provides reassurance that they are not alone in facing the challenges of living with the disease. Persons with Alzheimer’s disease continue to have the need for acceptance and social interaction. This need can be met by the opportunities of forming new relationships and maintaining emotional connectedness provided by being a member of a support group. The participant’s identity is not defined by Alzheimer’s disease as they laugh, cry, and rejoice in their common experience.
Although support groups for caregivers have been in existence for some time, support groups for persons diagnosed with dementia have been late in coming. As a result, there is little published information on effectiveness.
Our experience, and that of other support groups confirms that persons with Alzheimer’s disease are able to derive many benefits from groups, including reduced feelings of depression and isolation, empowerment through building community, effective and creative problem solving, and increased acceptance of the diagnosis of Alzheimer’s.
The Importance of Touch
One of the most frustrating aspects of Alzheimer’s disease is its impact on the person’s ability to communicate. Dementia affects communication skills in many ways including language, hearing, reading and writing. As verbal abilities are lost, the person with dementia finds it increasingly difficult to make his or her physical and emotional needs known to the caregiver. The results can vary from depression and withdrawal to agitation and aggressive behavior.
For the memory-impaired person, benevolent touch becomes tremendously important as a means of communication. The presence of touch, gestures and attentive listening by the caregiver, can communicate acceptance, reassurance and love to the person. Nonverbal communication can be considered to be listening with the ears, eyes and heart.
Benevolent touch is based on the theory that a positive touch with loving intent conveys the affection, trust, and warmth needed by all people. That touch may be the most effective means of communicating with people who have dementia. There are three types of benevolent touch: unstructured (hand-holding, hugging, caressing); structured (massaging the back or arms); and traditional (dancing, petting animals, and assisting with activities of daily living).
The presence of resident dogs, cats, rabbits and birds plus an activity-rich environment filled with music and dance increases our residents’ daily opportunities for traditional benevolent touch. But visitors will also see many moments of structured and unstructured touch throughout the day. If we accompany our residents to another room, we will guide them by holding their hand. Our body language lets our residents know that we are here to support them to the best of our abilities. Sometimes a delicate touch or a gentle pat on the back is all that is needed to bring a smile to their faces, or to calm them down when agitated.
Occasionally, we have residents who do not like to be touched, and it is our responsibility to respect the person’s wishes to the best of our ability. It is always recommended that visitors who are unfamiliar with a resident’s preferences either ask the resident permission or ask a nearby caregiver before you initiate contact.
As a nurse, I rely heavily on touch during my daily assessment of our residents’ health. That reassuring stroke that calms a person in distress can tell me if fever is present. A pat on the arm that brings a smile will tell me if a resident’s skin is too dry. Touch is an instinct we’ve had all of our lives. As children, we sought the security and protection of our parents’ arms. The need for that reassurance does not disappear in old age, and indeed, increases among the memory impaired. It is important for us all to remember the power of touch.
The Memory Box
As I walk down the halls of Silverado Senior Living, “memory boxes” – lovely cabinets filled with memorabilia of many lives and many special people surround me. These “memory boxes” are more that just decorations to fill our wide hallways. They are an opportunity to celebrate the human spirit and to rejoice in accomplishment and success.
As I look around my own home, I see evidence of my family and their accomplishments all around me. I see family pictures, and trinkets that trigger memories of happy times we’ve had together. I see soccer trophies, gymnastics ribbons, and pictures from the senior prom. I see souvenirs from our last vacation together. And as I linger over these treasures I can picture special moments in my mind that remind me of the things that are important to me in my life. And I celebrate, in my heart, the people and the moments captured there.
The same is true of our residents at Silverado Senior Living. Although suffering from memory impairment, the treasures placed in their memory boxes hold a special place for the happy times in their lives. They may not remember all that these things represent, but with the assistance of loving friends and caregivers they can relive the special moments of their lives and reminisce about the achievements and triumphs of many years of living.
But that’s not all we do with the “memory boxes” at Silverado. They are also a reminder to our caregivers and dedicated staff, that the people here are not just a number or a name or a face in a crowd. Our residents dignified, respected, successful individuals with lives, accomplishments and families. The memory boxes help us see our residents through the eyes of loving families and friends and help us know them without the debilitating effects of dementia. They help us honor, celebrate and truly connect with care about the people we care for. What a wonderful way to share the human spirit in all of us.
Senior Gardeners Cultivate Body, Mind and Spirit with Horticultural Therapy
At Silverado Senior Living communities, residents are encouraged to participate in Horticultural Therapy. According to the American Horticultural Therapy Association, “Horticultural Therapy is a process utilizing plants and horticultural activities to improve the social, educational, psychological, and physical adjustment of persons thus improving their body, mind and spirits.” The outcomes listed below are defined by this nationally recognized association:
Cognitive growth by:
• Providing educational development as a result of learning new skills and vocabulary.
• Increasing concentration and attention span.
• Improving the ability to work independently as a result of following directions and solving problems.
• Encouraging creativity.
Psychological well-being by:
• Providing the opportunity to nurture something living, encouraging a sense of usefulness and responsibility.
• Providing a chance to complete a project, which fosters self-esteem.
• Relieving stress, anger and aggressiveness.
• Physical rehabilitation by:
• Furnishing the motive to exercise as well as improving and maintaining fine and gross motor agility.
Social development by:
• Exposing participants to group dynamics through sharing and working together.
• Fostering social interaction.
In a judgmental world, plants are non-threatening and non-discriminating. They are living entities that respond directly to the care that is given them, not to the intellectual or physical capacities of the gardener. In short, they provide a benevolent setting in which a person can take the first steps toward confidence!
