Careful Observation. Like babies, people afflicted with dementia or Alzheimer’s will provide subtle cues or signals indicating their level of comfort or distress. By paying careful attention to their cues, we are able to compassionately respond to their needs.--Charlotte Parker
5 Steps to Compassionate Caregiving
Communicating with the Dementia or Alzheimer’s Afflicted
By Charlotte Parker
We are all born with a desire to give and receive love. Circumstances we encounter throughout our lives may callous that need, but it never fully dissipates. Sadly, as we grow older, we oftentimes become more challenging to love, and illnesses such as dementia or Alzheimer’s may even prevent us from appreciating the joy of giving it. At our moments of being the most seemingly unlovable is when we need to be loved the most.
Dementia and Alzheimer’s require caregivers to reach deep into their compassion reservoirs to find the patience and kindness all humans desire and deserve. My mother, Kathryn Parker, has been affected by frontal lobe dementia for the past two decades. Her doctors never expected her to see her 75th birthday, and we just celebrated her 90th. Although she has been bedridden for the past several years, is paralyzed on the left side of her body and is incapable of expressing herself through language, she continues to thrive. This journey into the depths of dementia has been a unique gift for me. My life circumstances have provided an opportunity for me to dig deep into my being and realize my capacity for compassion.
The most essential component to compassionate caregiving is having the willingness to release the attachment we all hold to our individual perceptions of reality and choose to quite literally step into the demented person’s reality. I found the following steps to be very helpful in the process of understanding and embracing my mother’s perception of reality.
• Careful Observation. Like babies, people afflicted with dementia or Alzheimer’s will provide subtle cues or signals indicating their level of comfort or distress. By paying careful attention to their cues, we are able to compassionately respond to their needs. They may walk away for “no apparent reason,” turn their head away from you, or indicate they are not understanding by simply discussing something else or by demonstrating obstinate behavior.
• Acknowledge and Adjust. Again like babies, the person with dementia has needs and desires he or she would like to have met. By acknowledging the cues and signals being providing and adjusting your behavior accordingly, you demonstrate respect and courtesy while creating a space that feels safe for the person.
• Constant Communication. Individuals with dementia often panic and become distressed because they are not able to remember from one moment to the next where they are and what is happening to them. When providing a service for the individual, constantly communicate the process of what is happening and what will happen next. Let the person know step by tiny step every detail of what you are doing. For example:
Kathryn I am going to wash your hair. Now we are going to rinse your hair. Doesn’t the water feel nice on your head. We are rinsing your hair. Feel the water. Doesn’t that feel nice? Next I am going to put shampoo in your hair. Can you smell that shampoo? Doesn’t it smell nice? I am rubbing the shampoo in your hair, etc.
By seemingly over communicating the task at hand, the individual maintains a sense of personal security and is able to stay in the moment with what is happening to her.
• Acceptance. Perhaps the hardest step in the process of compassionate communication is acceptance—accepting whatever the demented individual says or does is appropriate for the reality in which she lives. Attempting to force an Alzheimer’s patient to understand “our” reality is a pointless and arduous exercise in futility. By accepting the demented person’s reality, she is able to feel as though she is having a shared experience and is not living in an isolated and scary world.
• Just Say Yes! Whenever safe and appropriate find a way to say “yes.” We all want our questions and desires to be answered with a “yes;” unfortunately, more often than not the caregiver finds the request to be silly, pointless or entirely too much trouble. Just as children will pout, manipulate, throw a tantrum and countless other behaviors in an effort to elicit a “yes” from the parent, so will the demented individual. Have fun by allowing the patient to have fun too. We all want a yes answer—indulge the dementia patient as often as possible.
Charlotte Parker is the co-author of Return to Joy: A Family’s Initiation into the Mysteries of Dementia. Read more about Compassionate Caregiving