Effective Communication Strategies to Help Patients and Caregivers Cope With Moderate-to-Severe Alzheimer’s Disease
Jan Dougherty, RN, MS
The estimated prevalence of AD in people 65 years and older in the United States is currently 5 million.1 However, this number is expected to rise over the next few decades as life expectancy increases and the baby boom generation ages (AV 1).1 Clinicians must be prepared to not only diagnose patients with AD as early as possible but also to provide information to patients and family members about coping with the disease.
While memory impairment is a key criterion of AD,2 language impairment may cause more difficulty among patients and caregivers.3 Communication problems stemming from AD are associated with caregiver stress and patients’ problem behaviors, such as agitation and wandering.3,4 Communication skills training for family caregivers can improve interactions and quality of life in people with AD.5 Clinicians can help caregivers by educating them about the communication problems that are associated with various stages of AD, common mistakes, and effective strategies to lessen arguments and frustration.
Communication Decline in AD
Communication is the foundation of human relationships because it allows the sharing of thoughts, needs, and feelings. The progressive decline of communication in people with AD affects their interactions and relationships with those closest to them and can contribute to decreased quality of life for them and their caregivers.6 Impairments in the ability to communicate begin in the early stage of AD and worsen in the moderate and severe stages.
Moderate AD. For individuals with moderate AD, language impairments include problems with finding words and names, organizing words, and remembering their train of thought.3,7 They may use wrong or vague terms, like referring to someone as “that girl.” Individuals with AD may talk less, have difficulty understanding complex conversations, or tell stories that are not accurate. In social situations, people with AD may speak at inappropriate times, talk too loudly, repeat ideas, or speak off topic.3 For individuals with AD who learned English as a second language, some may revert to speaking their native language.7
Severe AD. The widespread disease throughout the brain in severe AD causes even more communication problems. Patients will speak less, jumble words or stories together, or use nonsense words. To compensate, they may rely more on gestures and other nonverbal communication.7 As language declines in patients with moderate-to-severe AD, communication deficits can hinder their ability to express their needs, which contributes to patient and caregiver burden.3
Communication Mistakes Made by Caregivers
Clinicians should inform caregivers about common communication mistakes, such as arguing or reasoning with the individual with AD. Family members often want to correct their loved one, or explain why he or she cannot live alone or drive, but this leads to arguing and other negative responses. Other communication pitfalls are giving unwanted reminders, such as “I’ve told you 3 times already,” or asking, “Don’t you remember?”8 Patients do not remember because AD impairs both short- and long-term memory. Caregivers must also be warned that giving too much information or preannouncing upcoming events can cause anxiety because people with AD have lost the ability to plan ahead and manage time.
Finally, caregivers should avoid patronizing talk and elderspeak, which is childlike communication with simplistic vocabulary and grammar, short sentences, slow speech, elevated pitch and volume, and inappropriately intimate terms of endearment, such as “honey” and “good girl.”9 In a study9 of nursing home residents with dementia and their caregivers, elderspeak increased the probability of what the study authors called resistiveness to care compared with normal talk (AV 2). Resistiveness to care is measured by problem behaviors such as aggression, withdrawal, and vocal outbursts that disrupt care. In addition to reducing cooperativeness in people with AD, elderspeak can lower self-esteem and increase dependent behavior.9 Individuals with AD still need to feel respected.
Communication Strategies for Caregivers
Clinicians can teach caregivers many strategies to improve communication. The first step for caregivers is to understand that the person with AD is doing his or her best and that the disease is causing the communication problems and subsequent behaviors. The second step is to adapt their communication according to the level of language deficits as the disease progresses. Using the following strategies can improve communication.
Include the person with AD. Never assume that individuals with AD do not understand or do not want to be included.7 Clinicians can model this behavior by looking at and talking to patients during office visits, even though the communication might be more directed to family members.
Set and maintain a positive tone. Caregivers must moderate their vocal tone and loudness, use eye contact, and avoid negative body language.8 To calm negative emotions (eg, frustration, fatigue) before communicating, caregivers can take some deep breaths, go for a walk, or defer the conversation to a later time.7
Gain the person’s attention. Caregivers should approach the person from the front and use touch as appropriate to get the person to look at them. Eye contact shows caring for the person with AD and can help the caregiver assess whether or not communication is successful.7 Family members and visitors should also be taught to identify themselves with their name and relationship to the person with AD to help them avoid embarrassment over their memory loss (AV 3).10
Minimize distractions. Background noise, such as music, television, or competing conversations, should be eliminated to avoid distracting the person with AD.8 In a group setting, a family member or friend could be assigned to carry on one-on-one communication with the person with AD. In a social situation, moving to a quieter place can eliminate noise that will compete with communication.
Keep the message simple. Caregivers should avoid providing superfluous information and must learn to get to the point. Short sentences are better than long sentences with more than one thought or action.10 Especially for caregivers who are assisting individuals with activities of daily living, such as grooming or dressing, they must give instructions one step at a time.7
Ask appropriate questions. Caregivers should use questions that require yes or no answers since open-ended questions are challenging for individuals with AD to understand and taxing to answer.10 For example, caregivers should ask, “Would you like some coffee?” rather than, “What would you like to drink?”7 Because their word recognition and vocabulary are impaired, individuals with AD will have trouble responding to open-ended questions. However, caregivers can still give choices,10 such as, “Would you like coffee or tea?”
Make sure the person understands what is being said. Caregivers should watch for the person’s reaction. Do they understand what is being said or do they have a blank expression? When the message is not understood, caregivers may repeat the message or simplify it. If that does not work, gestures may be successful.7 Caregivers may also need to talk less on days when the individual with AD is having trouble communicating. In some cases, providing short written notes can be helpful.7 Familiar prompts or resources, such as poems, books, pictures, and music, can also be used as meaningful communication between family members and the person with AD.11
Respond to emotion first. An emotional response will likely come before a verbal response in people with AD, especially if they are feeling fearful, anxious, or frustrated. Caregivers should respond to this emotion and provide reassurance, which should smooth the way for more positive communication.
Keep a sense of humor. Funny things will be said, and misinterpretations may occur, but caregivers who maintain and use a sense of humor can diffuse tense situations.7
As the number of people with AD increases, clinicians should be able to educate caregivers and patients early in their disease about the stages of AD and the communication challenges that lie ahead. Patients with AD will experience varying degrees of word loss, concentration problems, and difficulty expressing needs and ideas. Rather than getting frustrated and trying to correct the person with AD, caregivers can learn to avoid these mistakes and treat the person with respect to further avoid unwanted arguments. By equipping caregivers with strategies to aid communication, clinicians can improve the quality of life of their patients with AD. Caregivers can learn to rely on nonverbal communication (such as touch, eye contact, and gestures), keep instructions clear and simple, and repeat information as necessary. A positive tone and a sense of humor will ease tense situations and provide an atmosphere where individuals with AD will feel loved and accepted, even when they can no longer communicate those emotions back to their loved ones.
- Help patients and caregivers understand the stages of AD and the associated communication problems that may occur
- Teach caregivers to avoid common communication errors, including arguing, reasoning, giving unwanted reminders or too much information, and speaking in a patronizing manner
- Equip caregivers with communication strategies that incorporate body language, gestures, a positive tone and environment, and clear, simple speech
- Hebert LE, Weuve J, Scherr PA, et al. Alzheimer disease in the United States (2010–2050) estimated using the 2010 census. Neurology. 2013;80(19):1778–1783. PubMed
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA: American Psychiatric Association; 2013.
- Ferris SH, Farlow M. Language impairment in Alzheimer’s disease and benefits of acetylcholinesterase inhibitors. Clin Interv Aging. 2013;8:1007–1014. PubMed
- Savundranayagam MY, Orange JB. Matched and mismatched appraisals of the effectiveness of communication strategies by family caregivers of persons with Alzheimer’s disease. Int J Lang Commun Disord. 2014;49(1):49–59. PubMed
- Eggenberger E, Heimerl K, Bennett MI. Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. Int Psychogeriatr. 2013;25(3):345–358. PubMed
- Woodward M. Aspects of communication in Alzheimer’s disease: clinical features and treatment options. Int Psychogeriatr. 2013;25(6):877–885. PubMed
- Alzheimer’s Association. Communication: tips for successful communication at all stages of the disease. www.alz.org/national/documents/brochure_communication.pdf. 2013. Accessed July 15, 2014.
- National Institute on Aging. Alzheimer’s caregiving tips: changes in communication skills. http://www.nia.nih.gov/alzheimers/publication/changes-communication-skills. Published July 2012. Accessed July 15, 2014.
- Williams KN, Herman R, Gajweski B, et al. Elderspeak communication: impact on dementia care. Am J Alzheimers Dis Other Demen. 2009;24(1):11–20. PubMed
- Weirather RR. Communication strategies to assist comprehension in dementia. Hawaii Med J. 2010;69(3):72–74. PubMed
- Department of Health, State Government of Victoria, Australia. Communication strategies: good practice for quality dementia care. www.health.vic.gov.au/dementia/strategies/communication-strategies.htm. Updated January 14, 2014. Accessed July 15, 2014.
From the Series:
Supported by an educational grant from Forest Laboratories, Inc.
CME Background Information
Supported by an educational grant from Forest Laboratories, Inc.
Participants may receive credit by reading the activity, correctly answering the posttest question, and completing the evaluation.
After completing this educational activity, you should be able to:
- Develop strategies to communicate with patients and caregivers about an Alzheimer’s diagnosis and prognosis in a clear and compassionate manner
The faculty for this CME activity and the CME Institute staff were asked to complete a statement regarding all relevant personal and financial relationships between themselves or their spouse/partner and any commercial interest. The CME Institute has resolved any conflicts of interest that were identified. No member of the CME Institute staff reported any relevant personal financial relationships. Faculty financial disclosures are as follows:
Ms Dougherty has no personal affiliations or financial relationships with any commercial interest to disclose relative to this presentation.
The Chair for this activity, William J. Burke, MD, is a consultant for Otsuka and has received grant/research support from Eli Lilly, Pfizer, Takeda, NeoSync, Elan, Accera, and Lundbeck.
The CME Institute of Physicians Postgraduate Press, Inc., is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.
The CME Institute of Physicians Postgraduate Press, Inc., designates this enduring material for a maximum of 0.5 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
The American Academy of Physician Assistants (AAPA) accepts certificates of participation for educational activities certified for AMA PRA Category 1 Credit™ from organizations accredited by ACCME or a recognized state medical society. Physician assistants may receive a maximum of 0.5 hours of Category I credit for completing this program.
To obtain credit for this activity, study the material and complete the CME Posttest and Evaluation.
Release, Review, and Expiration Dates
This Neurology Report was published in December 2014 and is eligible for AMA PRA Category 1 Credit™ through December 31, 2017. The latest review of this material was July 2014.
Statement of Need and Purpose
Of US adults over the age of 70 years, almost 15% have a form of dementia, most commonly due to Alzheimer’s disease (AD). As the population ages, the prevalence and economic burden of this disorder are expected to significantly increase. AD has the following stages of progression: preclinical, mild, moderate, and severe. Patients with AD generally begin to require the help of a caregiver during the moderate stage, and then the disease progresses into the severe stage, requiring around-the-clock care, which can be a stressful and hefty burden for caregivers. AD is difficult to diagnose in the early stages, and physicians may mistake the disease for general signs of aging or stress, have time constraints for accurate assessment, have concerns about stigmatizing the patient, or lack the necessary skills to explain a dementia diagnosis to patients and their caregivers. After diagnosing AD, treatment guidelines recommend prescribing one of several FDA-approved agents to slow cognitive, functional, and behavioral decline; however, only about 25% of patients with AD receive these medications. Physicians may perceive that treatment options are limited or are not effective for AD since progression of the disease is inevitable. Additionally, physicians may not effectively communicate treatment options to caregivers, many of whom have reported that physicians have not told them about potential treatment options that could temporarily stabilize AD or given them adequate information on the course of the disease and its effect on function and memory, where to find help and services, and how to manage abnormal/difficult behavior. Physicians need education on managing and treating patients with moderate-to-severe AD, including communicating effectively with patients and caregivers on the diagnosis and prognosis of AD, as well as treatment options and goals. This activity was designed to meet the needs of participants in CME activities provided by the CME Institute of Physicians Postgraduate Press, Inc., who have requested information on AD.
Disclosure of Off-Label Usage
Ms Dougherty has determined that, to the best of her knowledge, no investigational information about pharmaceutical agents that is outside US Food and Drug Administration–approved labeling has been presented in this activity.
The entire faculty of the series discussed the content at a peer-reviewed planning session, the Chair reviewed the activity for accuracy and fair balance, and a member of the External Advisory CME Board who is without conflict of interest reviewed the activity to determine whether the material is evidence-based and objective.
This Neurology Report is derived from the planning teleconference series “Treating and Caring for the Patient With Moderate-to-Severe Alzheimer’s Disease,” which was held in May 2014 and supported by an educational grant from Forest Laboratories, Inc. The opinions expressed herein are those of the faculty and do not necessarily reflect the opinions of the CME provider and publisher or the commercial supporter.