Communicating with the Cognitively Impaired

Caregiving: A Universal Occupation

Most people will become caregivers—or need one—at some point in their lives. A caregiver is anyone who provides basic assistance and care for someone who is frail, disabled, or ill and needs help. Caregivers perform a wide variety of tasks to assist someone else in his or her daily life, for example, balancing a checkbook, grocery shopping, assisting with doctor’s appointments, giving medications, or helping someone to eat, take a bath or dress. Many family members and friends do not consider such assistance and care “caregiving”—they are just doing what comes naturally to them: taking care of someone they love. But that care may be required for months or years and may take an emotional, physical, and financial toll on caregiving families.

For some people, caregiving occurs gradually over time. For others, it can happen overnight. Caregivers may be full- or part-time; live with their loved one, or provide care from a distance. For the most part, friends, neighbors, and most of all, families, provide—without pay—the vast majority of care.

Many American families care for an adult with a cognitive (brain) impairment. Cognitively-impaired people have difficulty with one or more of the basic functions of their brain, such as perception, memory, concentration, and reasoning skills. Common causes of cognitive impairment include Alzheimer’s disease and related dementias, stroke, Parkinson’s disease, brain injury, brain tumor, or HIV-associated dementia. Although each disorder has its own unique features, family members and caregivers often share common problems, situations, and strategies.

Caregiving and Cognitive Impairments

We know that cognitive and memory impairments can change how a person thinks, acts, and/or feels. These changes often present special challenges for families and caregivers. An ordinary conversation, for example, can be quite frustrating when your loved one has difficulty remembering from one moment to the next what has been said.

Individuals with moderate to severe dementia or another cognitive impairment often require special care, including supervision (sometimes 24 hours a day), specialized communication techniques, and management of difficult behavior. They may need help with activities of daily living (called “ADLs”), such as bathing, eating, transferring from bed to a chair or wheelchair, toileting, and/or other personal care.

Cognitive Impairment and Nurse care

Communication is the pulse of nursing practice. Communication barriers of the mentally and cognitively impaired patients seem to erode the quality of nursing care. Lack of nurse-patient interaction due to the patient’s cognitive impairment affects nurse assessment of the patient and medication adherence. Studies to elucidate the effects of cognitive impairment on the reliability of nurse assessments to explore the relationship between cognitive status and reliability of multidimensional assessment data have proved that the reliability of the patient’s communication and sensory ability are affected by cognitive status. The major factor contributing to the disadvantage has been the inadequacy in training of nurses in associated communication skills. Other factors include the patient’s concealing of their disability, work pressure, and poor communication of the nurses. Communication with the cognitively impaired is complex, with different aspects of perception and practice. Studies on such cognitively impaired patients to evaluate the time caregivers provide for direct patient care have shown that more time is being spent with normal patients than with the affected.  Non-speaking patients are the worst affected, and it is important to improve their communication to allow them to receive ccare and comfort. The use of non-verbal communication skills to improve nursing care, especially with mentally ill and cognitively impaired people, seems to be the key to nursing care in such settings.

Challenging Behaviors

Individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating for caregivers. These might include communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment, and wandering. Some people may develop behavioral problems early on, while others go their entire illness with only minor issues. Most cognitively-impaired persons fall somewhere in the middle, having good days and bad days (or even good or bad moments). Anticipating that there will be ups and downs and maintaining patience, compassion, and a sense of humor will help you cope more effectively with difficult behavior. It’s important to remember that it’s the disease, not the person, causing the behavior.

Helpful suggestions for managing these problems include communication techniques, such as keeping language simple and asking one question at a time. Break down tasks and questions. For example, instead of asking, “would you like to come in and sit down and have a snack?” use simple statements such as, “sit down here,” and “here’s a snack for you.”

Wandering and poor judgment may signal the need for 24-hour supervision. If wandering or aggressive behaviors are problems, you may need to contact emergency, police, fire, or medical systems. 

The Role of Non-Verbal Communication 

The use of non-verbal communication skills (NVC) to improve care has been recommended for cognitively impaired patients. A study outlining a health care professionals’ diagnosis of altered non-verbal communication and a new wellness diagnoses for enhanced non-verbal communication with detailed discussion on the use of NVC with people with comprehension difficulties stresses on the fact that nurses play an important role in enhancing the non-verbal skills of the patient to help them communicate. An assessment instrument, called, the Resident Assessment Instrument/Minimum Data Set (RAI/MDS) with a self incorporated MDS Cognitive Performance Scale (CPS) has been evaluated and has been found to contribute to the improvement of quality of nurse care of the cognitively impaired. Another instrument consisting of a single sheet of paper with the human body pictured from the front and from the back for the observation of touch and nurse-patient interactions has been developed recently. The non-verbal communication in such settings includes patient-directed eye gaze, affirmative head nod, smiling, leaning forward, touch, and instrumental touch. It has been observed that these non-verbal communications have a tremendous impact on the patient’s well-being and comfort.  The nurses seem to eye gaze, head nod, and smile to establish a good relationship.

Touching is a form of communication that is so important in nursing practice. The importance of improving communication by touch has been documented, elucidating the importance of touch as an integral aspect of care, with the language of touch, including tactile symbols of duration, location, action, intensity, frequency, and sensation. A content analysis of the data in a recent study with 25 patients and 30 nurses interviewed using a semi-structured schedule has shown that the patients experience touching by nurses as gentle, comforting, and important. Touching induces a good relationship between nurses and their patients. Such a caring touch has been classified as affectional, functional, and protective. An examination of touch between health care professionals and patients has shown that most touch interactions in care of the elderly are instrumental in nature, and expressive touches are usually given to body extremities like the forehead, arms, and the legs. There cannot be a universal approach to employ nonverbal communication like touch because of the fact that some patients enjoy contact, some avoid contact, some are aggressive, some show only a slight reaction, and some patients do not react at all.   

The nurse should be able to perceive the expressions of the patient and also the patient’s perceptions of nurse’s interactions to provide maximum comfort. A study to elucidate patient’s perception of the use of touch and space by nursing staff that is critical in all aspects of patient care has shown that staff and patients’ perceptions of space and touch interactions are similar. Age and gender have been shown to influence these perceptions . A recent study has elucidated that a detailed coding of facial activity of the patients can provide an understanding of biological, behavioral, cognitive, and social parameters. The distance between the patient and the nurse, posture and position, utterance time, the direction of a nursing person’s face to the patient, facial expression, head nodding, gestures, and the self-contact behavior of a nurse during interaction with a patient are important variables of this nonverbal communication process.

When a person with a disability does have difficulty with communication, it may be helpful to keep the following in mind:

• Allow additional time to exchange information.
• An assessment of language skills helps to choose the level of language you use. Talking with someone with mild communication difficulty is very different than talking with a person with a moderate or severe communication difficulty.
• Many people have stronger receptive (understanding) communication skills than expressive skills.
• Conversely, a person’s expressive speech may sometimes give an impression of better comprehension than is actually the case, so check the patient’s understanding.
• Some people may be delayed in responding to questions, so much so that answers may seem to “come out of nowhere.”
• Some people with severe disabilities may also have difficulty giving you an accurate picture of their feelings and symptoms because of limitations in interpreting internal cues (e.g., need to urinate, anxiety). Involving caregivers who know the patient well may help you to better understand his/her experiences. However, as much as possible, continue to focus your communication efforts on the patient.
• If you are in a busy area with many distractions, consider moving to a quieter location.

Caregiving Points to Remember

The feelings that occur to both professional caregivers and family members alike are important to recognize and process.  Emotions such as fear, sadness, anxiety, guilt, frustration, and even anger are normal and may come and go throughout your time of providing care. Although it may not seem possible, along with challenges will come the unanticipated gifts of caregiving, love, compassion, courage that can weave hardship into hope.

Step 1. Lay the foundation. Establishing a baseline of information with the family lays the groundwork for following current and future care decisions. Talk with the family and patient. What was mom “normally” like? How has she changed? How long has she forgotten to take her medicine? When did she stop paying her bills? Answers to questions such as this help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation but also provides an important foundation for a more formal assessment.

Step 2. Medical assessment and diagnosis are crucial. It’s very important for there to be a comprehensive medical exam from a qualified health care team that reviews both physical and mental health for you to do your job well. Many medical conditions can cause dementia-like symptoms, such as depression and medication interactions. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s and Parkinson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essential in accurately determining treatment options, identifying risks, and planning for the future. 

Step 3. Information is empowering. Stay up to date on diseases, diagnosis, medications, and new care options.  Learn how the disease progresses, the level of care that should be needed, and what resources may be available to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will increase your confidence and may reduce any anxiety you may feel and that of the family you are helping.

Step 4. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assistance someone needs and establishes their personal preferences for care (e.g., bathing in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alzheimer’s may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating, and hygiene.

Assessments usually consider at least the following categories:

• Personal care: bathing, eating, dressing, toileting, grooming
• Household Care: cooking, cleaning, laundry, shopping, finances
• Health Care: medication management, physician’s appointments, physical therapy
• Emotional care: companionship, meaningful activities, conversation
• Supervision: oversight for safety at home and to prevent wandering

Step 5. Outline a care plan with the family—a strategy to provide the best care for your patient and yourself. Think about both short- and long-term needs.

This plan will always be a “work in progress,” as needs will change over time. To start developing a plan, first list the things you are capable of, have time for and are willing to do. Then list those things that you would like or need help with, now or in the future. 

It is important to set a time frame for any action or activities planned. Also, it is wise to have a backup plan should something happen to you, both for the short-term and the long-term.

Step 6. The home, if serving in one, should be safety-proofed. Caregivers often learn, through trial and error, the best ways to help an impaired patient maintain routines for eating, hygiene, and other activities at home. This may require the use of assistive equipment and managing difficult behavior. It is also important to follow a safety checklist:

Be aware of potential dangers from:

• Fire hazards such as stoves, other appliances, cigarettes, lighters, and matches;
• Sharp objects such as knives, razors and sewing needles;
• Poisons, medicines, hazardous household products;
• Loose rugs, furniture, and cluttered pathways;
• Inadequate lighting;
• Water heater temperature—adjust setting to avoid burns from hot water;
• Cars—do not allow an impaired person to drive;
• Items outside that may cause falls, such as hoses, tools, gates.

Be sure to provide:

• Emergency exits lock to secure the house, and, if necessary, door alarms or an identification bracelet and a current photo in case your loved one wanders;
• Bathroom grab bars, non-skid rugs, paper cups rather than glass;
• Supervision of food and alcohol consumption to ensure proper nutrition and to monitor the intake of too much or too little food;
• Emergency phone numbers and information;
• Medication monitoring.

Step 9. Take care of yourself. Although this step appears last on this list, it is the most important step. Caregiving is stressful, particularly for those caring for someone with dementia. Caregivers are more likely than their non=caregiving peers to be at risk for depression, heart disease, high blood pressure, and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor health. The following simple, basic preventative healthcare and self-care measures can improve your health and your ability to continue providing the best care for patients.

Practice daily exercise. Incorporating even a small amount of regular exercise into your daily routine can do wonders—it can improve your night’s sleep, reduce stress and negative emotions, relax muscular tension, and increase your mental alertness and energy levels. The latest research shows health benefits from walking just 20 minutes a day, three times a week. 

Eat nutritious meals and snacks. Caregivers often fall into poor eating habits—eating too much or too little, snacking on junk food, skipping meals, and so on. Much of eating is a habit, so make it a point each week to add a new healthy eating habit. For example, if breakfast is simply a cup of coffee, try adding just one healthy food—a piece of fresh fruit, a glass of juice, whole-grain toast. Small changes add up and can be realistically incorporated into a daily schedule.

Get adequate sleep. Many caregivers suffer from chronic lack of sleep, resulting in exhaustion, fatigue, and low energy levels. Depleted physical energy, in turn, affects our emotional outlook, increasing negative feelings such as irritability, sadness, anger, pessimism, and stress. Ideally, most people need six to eight hours of sleep in a 24-hour period. If you are not getting enough sleep at night, try to take catnaps during the day. If possible, make arrangements to get at least one full night’s rest each week or several hours of sleep during the day. If the person you care for is awake at night, make arrangements for substitute care or talk to his or her physician about sleep medication.

Get regular medical check-ups. Even if you have always enjoyed good health, being a caregiver increases your risk of developing a number of health problems. Regular medical (and dental) check-ups are important health maintenance steps. Inform your doctor of your caregiving role and how you are coping. Depression is a common and treatable disease. If you are experiencing symptoms such as a lingering sadness, apathy, and hopelessness, tell your doctor. 

Take time for yourself. Recreation is not a luxury. It is a necessary time to “re-create”—to renew yourself. At least once a week for a few hours at a time, you need time just for yourself—to read a book, go out to lunch with a friend, or go for a walk. 

Emotional Side of Caregiving

Online Resources

The Internet provides a wealth of information for caregivers, from an organization’s mission and contact information to online support groups to articles about overcoming the challenges of caregiving. Most public libraries, universities and many senior centers have computers and Internet access available for free public use. If you do not know how to use a computer or how to access the Internet, don’t be shy—organization personnel is trained to show you how to get the information you are looking for. Once you get to a search engine such as Yahoo or Google, type in the search terms—the general information you are seeking, such as “adult daycare” or “Alzheimer’s disease support groups,” and you will usually get a number of options to choose from. If you do not succeed the first time, try changing the search terms, such as “respite care.”

One word of caution: as with any printed material, read with a healthy skepticism—just because it is on the Internet does not make it true. If in doubt, check the information with another independent resource. 

A number of caregiver resources are available to both professional caregivers and family members.