Dementia Care, Compassionate Communication

by Stephanie Koop, RN,CWC Nurse Case Manager

Techniques for building a relationship with a person living with dementia (PLWD) were offered by Charleen Phelps, RN of Positive Approach to Care (PAC) in a program discussing dementia care partnering. The day-long event offered at no cost to the public by Citizens Who Care was held at Davis Community Church on September 7 and attended by 75 caregivers and professionals. PAC was founded by dementia and Alzheimer's care expert Teepa Snow. This presentation was made possible by a generous grant from the Biberstein Social Action Fund.

Only by first acknowledging the physiological brain changes that distinguish dementia are loved ones ready to begin the process of understanding the PLWD. These include increased primal responses such as fright, flight, or fight and diminished executive capacity for impulse control, and decision making. Alzheimer’s brains have changes in the hippocampus where learning and memory are affected. Visual and language changes may also significantly impact the ability to see and communicate.

The dementia training emphasized that the relationship between the PLWD and their care partners is the most important part of care partnering. To support this centerpiece of the PAC training, it is important to accept and practice working with our loved ones as partners instead of for our loved ones as caregivers. As a result, the outcome of any care partner interaction, whether it is going to the doctor’s office, taking a bath, getting dressed, or just having a conversation, becomes secondary to the relationship between PLWD and their care partners. Some of the essential qualities of the care partnering relationship include patience, consideration, flexibility, and remaining calm and non-judgmental.
Although it may not be overtly apparent to the casual observer that PLWD are injured, our loved ones are struggling with disease and coping in ways that make sense to them. All people, whether or not they have an illness, experience the same emotions even though they may express them in a different way. If we know that a PLWD is yelling due to an over stimulating environment, then it is easier to accept unexpected behaviors. It is our job to be detectives and try to figure out the meaning behind our loved ones responses and what their unmet needs may be (could they be hungry, bored, or in pain?)
“People living with dementia are doing the best (job that) they can” states Teepa Snow. Therefore, to affect the outcome of our interactions with PLWD, we must look at our own behaviors and be willing to modify our responses and interactions by embracing creativity and loving understanding. Some ideas for altering outcomes might include not arguing with your loved one about inconsequential facts or details and instead either dropping the conversation/issue or trying a new way to approach the problem. You can stop wanting to be right all the time. And remember that if it’s not a safety issue, it’s probably not essential for the PLWD to have all the facts or details. Remaining calm and using simple verbal and non-verbal communication to get a point across is another good plan. Your raised voice and upset countenance may cause the PLWD to become agitated.

Another point Charleen made was that PLWD may not be able to initiate some tasks or even tell you that they can’t initiate a task (even though they may want to perform the action). So, simply putting a toothbrush in a person‘s hand and initiating the brushing action could be enough of a reminder for the person to be able to finish the task. Every PLWD is different and each person‘s journey is different. An activity that works for you one day may or not work on another day with your loved one. Keep a diary of things that work for you and use your creativity to come up with other solutions to the problems you need to solve.

The PAC program and videos reveal that dementia is much more than loss. Teepa Snow uses the analogy of different gemstones to represent the different levels and characteristics of dementia. For diamond level, people prefer rituals and routines, enjoy the familiar, resist change, have a limited perspective, may be territorial, repeat themselves, and may be able to cover their mistakes in social settings. The amber level folks are people who are caught in time. They focus and react to sensations, live in the moment, have trouble understanding or expressing their needs, find it difficult to connect with others, may resist help or assistance, and cannot delay desires. When we are able to recognize and accept the qualities of the PLWD, only then are we able to best relate to them and meet their needs. More information about the other gemstone levels can be found on Teepa’s website www.teepasnow.com or look up her free videos on YouTube.

Other resources include: The Alzheimer’s Foundation - www.alz.org; Family Caregiving Alliance--https://www.caregiver.org; Del Oro Caregiver Resource Center -www.deloro.org - a local organization that provides practical information as well as money for caregivers trying to make ends meet; UCLA dementia program has caregiver training videos and Alzheimer caregiver education webinars at https://dementia.uclahealth.org/caregiver-education.