Communicating and interacting with people with dementiaAugust 17, 2017
“The way we communicate with others and with ourselves ultimately determines the quality of our lives.” This quote from author Tony Robbins perfectly describes the goal that Dr. Rita Armstrong DNP would like more nurses and caregivers to take into consideration when interacting and working with people with dementia.
As a nurse, the goal is to treat patients with respect, patience, and understanding. For patients with dementia, this is especially necessary. Dementia affects 47.5 million people worldwide. With America’s population continuing to live for longer periods of time, the 33 percent of people ages 85 and older with Alzheimer’s may not be as rare as one may believe.
Dementia is an umbrella term for conditions involving cognitive impairment—with symptoms that include memory loss, personality changes, and issues with language, communication, and thinking. More than 60 percent of dementia cases are people with Alzheimer’s. With improvements in health and people tending to live longer, loved ones can expect care costs to reach as high as $1 trillion by 2030.
I have been on both sides of the fence in talking about dementia. I have taken care of patients with dementia and Alzheimer’s as a nurse, and I recently took care of my dad who also had dementia. Communication and how a person interacts with people who have dementia is vital to patient care outcomes. Sometimes we do not realize what we say or how we say things that can trigger distress behaviors, which makes it even more difficult to give quality care to a person living with dementia.
Diagnosing dementia the proper way
In order to be diagnosed with a type of dementia, the patient should go through neurological evaluations and cognitive testing. Common symptoms to look out for include:
- Trouble completing everyday tasks such as cooking or cleaning
- Inability to find things that have been misplaced
- Decreased ability to pay attention
- Confusion or disorientation, especially about the day or time
- Personality and mood changes
- Struggling to communicate verbally or in writing
- Decreased judgment and reasoning
- Inability to adapt to change
- Problems with visual perception (i.e., accurately judging distances)
- Loss of motivation, apathy, and withdrawal
Learning to communicate with someone who has dementia
As a nurse who regularly interacts with dementia patients, I know that it can become much easier over time to learn the proper ways to communicate with these patients. For caregivers, it may take a bit more time to fully grasp that a loved one can no longer communicate the way he or she used to. Avoid questions such as these to improve communication.
- Do you remember when?
- Mother, may I …?
- Father, may I …?
- Please try to eat this one spoon/forkful of ___________.
- Let me help you.
- What did you eat for dinner?
The questions above may trigger a distress behavior. If the person with dementia cannot remember what they had for breakfast, then why would you ask what they had for dinner? The idea is to give the person with dementia the chance for independent thinking without overwhelming demands.
For example, ask if they want a ham sandwich for a snack, which warrants a yes or no response, versus asking if they want a ham, turkey, or peanut butter and jelly sandwich for a snack. This gives the person with dementia control and minimizes frustration or anxiety when bombarded with too many choices.
Comments such as “let me help you” may seem innocent. However, a nurse or caregiver may again be limiting this person’s independence. Allow the individual to do as much as they can from bathing to putting on their clothes and then step in to assist with what they have trouble with or cannot do alone. Lastly, think about someone trying to get you to eat one more spoon of food. How would you feel? Would this cause you to get upset if you are full? This can also be a trigger for a distress behavior.
Asking one question at a time and giving them time to answer may also help to avoid the person with dementia from becoming frustrated. Caregivers or nurses may become more observant of a patient’s nonverbal communication (facial expressions or body gestures). It is not unusual for someone with dementia to stop communicating, withdraw from daily activities, repeat questions or statements, or have a loss of appetite. In the event that they do, there are activities to involve them in, such as music therapy, pet therapy, painting, or simple arts and crafts.
The goal is to patiently work with them during their transitional period. For caregivers, it may be an undoubtedly overwhelming experience. But just imagine how the person with dementia must feel. Ideally we have to be in their world because they are no longer in ours. Their reality is real, and for us to say it is not will certainly cause a distress behavior at some point.
Speaking in a pleasant tone (slower, lower, clearly, and with a smile) could also be helpful. Instead of bombarding a person who has dementia with questions, try asking one question at a time. Use short, simple words and phrases. Wait for a response after asking the question, and make sure to maintain eye contact. Also, be mindful of a person’s culture. In some cultures, it may be disrespectful to maintain eye contact. Inquire about what cultural practices are pertinent to the situation.
Blocking out negativity related to dementia
Try using positive words in reference to people with dementia or Alzhiemer’s. I recall giving a report to a nurse during her shift, and verbally stating words such as “aggressive,” “wandering,” and “sundowner.” However, now that I really think about the negative perception those words can give, my vocabulary has changed. When I think of the word “aggressive,” I think of someone wanting to physically harm another or be combative when his or her behavior may genuinely be involuntary. When I think of what a “sundowner” is, it is when the sun goes down and a patient becomes out of control.
As nurses, the first thing we may say is, “OK, I will have to get the Xanax or Ativan ready for this shift.” As nurses, we think it’s OK to have these antipsychotic medications on standby. Wrong!
Every behavior being expressed is their way of trying to communicate to you that they have a need. Antipsychotic medications should be the last resort, not the first choice.
Other negative words to avoid:
- Dementia sufferer
- Challenging behavior
- Not all there
- Losing his/her mind
Replace those negative words with these positive words:
- Person with dementia
- Walking with intent
- Person living well with dementia
- Person living with dementia
While using positive words, also avoid the following:
- Using logic and reasoning (that the dementia patient may not understand)
- Criticizing, correcting, or arguing
- Distractions when interacting
- Open-ended questions
Hospitals and independent health care facilities should try to change the staff perspective to the patient’s perspective. By accepting that the patient’s reality is real to them, then a nurse’s actions will keep that in mind. This may also aid in building trust between the nurse-patient relationship to better communicate the patient’s needs. The patient needs their feelings to be taken into consideration, not just facts and statistics. Be cognizant of their emotions and what is being said in that moment.
The behavior we see and do not see
Referring back to my point about distress behaviors related to someone with dementia, there are instances that a nurse or caregiver cannot see. What we see are the gestures, body language, words, or tones coming from the person with dementia and may be interpreted as acting out or anxiety, or being out of control. However, what the person with dementia is trying to communicate may be experiences, fears, prejudices, feelings, values, and beliefs that need further assessment. These behaviors are what we cannot see during our interaction with them at that time.
Do not ignore or say “OK, you need some Ativan to calm down.” There may be an instance where the patient may need Ativan or Xanax but not every time they display a distress behavior. For example, Lucy may come to you saying, “Did you know I had a chicken coop?” Your response may be to deny that she does. Her response could be a distress behavior (change in tone, sharp words, defiant body language) to possibly avoid the risk of her flailing her arms everywhere and getting upset. Instead say, “Tell me about your chicken coop.” This builds trust between you and that individual and will modify the distress behavior producing a positive outcome.
Quality training for nurses helps staff identify and address underlying triggers without the use of anti-psychotics. According to the Alzheimer’s Society, the Affordable Care Act mandates reducing use of antipsychotic medications as a way to address dementia-related behaviors. The Texas Department of Aging & Disability reports that Texas went from being ranked in the 51st position to the 36th position out of 52 states that use antipsychotic medication; and it has been identified as one of the fastest states to turn around the high usage of antipsychotic medication. Using alternative therapies for people with dementia or Alzhiemer’s is working for the greater good.
From nursing doors to my dad: When dementia became personal
My personal experience in taking care of my dad with dementia was challenging. I was a caregiver who had to teach my mom how to interact and communicate with him. My mom still considered him to be her loving husband of 40 years, not acknowledging that his environment had changed. I also found myself talking to him as if he was the same dad I’d known for 47 years. I know we all tend to forget things on a day-to-day basis, but what changed for my dad is when that forgetfulness was on a continuum with no remembrance of what was misplaced.
This behavior increased and thus warranted an evaluation for him to be diagnosed. Of course, the first reaction was denial from both of my parents. Then came reality as time progressed. I saw the distress behaviors when he was asked multiple questions at once and how my mom was doing everything for him, such as bathing, combing his hair, feeding him, etc. When I approached my mom, the conversation was about allowing him to do as much as he can for himself to avoid becoming so dependent.
I remember when I would give my mom respite (time off to take care of herself). Unfortunately, my father had already become quite dependent on her already. At that time, he remembered who I was and remembered that I was a nurse so he trusted me with taking care of him. I gave him the daily living tools to bathe himself, brush his teeth, and comb his hair. In communicating with him, I was educating my mom about how she should approach conversing with him. With the communication tips that I’d already learned, I would allow her to communicate as she saw fit. Then, I’d wait five or 10 minutes to provide the correct way to ask or explain the same language. She was astonished by how different his behavior was with one form of communication versus the other.
Moving forward, we both saw the need for appropriate communication and how to modify those distress behaviors to produce positive health care outcomes. Although my dad is no longer with us, he has set the stage to teach, engage, and inspire health care providers to communicate and interact with people with dementia.
Dr. Rita Armstrong DNP, MSN Ed., RN, is the Director of Nursing of the RN to Bachelor of Science in Nursing online program at Dallas Nursing Institute. She continues to teach nursing education, is a member of multiple nursing organizations, has been a certified Master Teacher since 2010, and continues to bring innovation and lifelong learning to the teaching environment.
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