Approaching Dementia with Understanding, Acceptance, and Compassion  

A year ago this week, I wrote about Katya De Luisa, a dementia educator, caregiver coach, and author of “Journey through the Infinite Mind – the Science and Spirituality of Dementia.”   

Besides being an art therapist who works with dementia patients, De Luisa writes books that are designed to inform, encourage, and empower those who are experiencing dementia, their families, caregivers, and health care professionals. In her book and on her blog, she emphasizes the importance of heart-based communication and empathizing with what the person with dementia is experiencing. Her vision is to erase the social stigma of dementia and to transform the fear surrounding this condition into understanding, acceptance, and compassion. Last month, De Luisa hosted a fascinating presentation titled “An Exploration of Dementia with Katya De Luisa,” which can be viewed here. I will speak more about her later in this article. 

Changing Caregiving to “Care-living!” 

Similar to Katya De Luisa, Myrna Marofsky, dementia caregiver and author of “The Last Dance, A Partner’s Story of Living and Loving Through Dementia,” wants to change the way we view dementia, and how we communicate with our loved ones.  

To Marofsky, the words “Dementia is the long goodbye” conjure up feelings of dread. To her, if we look at dementia as constantly saying goodbye, no joy or memories will be made with our loved one, so her hope is to reframe how we look at things, in a more positive light. “What if dementia is the process of finding daily doses of gratitude?” she asks.   

Dementia doesn’t have to be a tragedy unless we allow it to become one. To eliminate this from our conversations, Myrna Marofsky decided to take some action in her own life as a dementia caregiver. She requested that her husband be recognized and spoken to, asking questions of the medical professionals that forced them to dig deeper, and never allowing anyone to trick him because he wouldn’t know anyway. Here are some of the other actions she took to change the lens in which her husband’s dementia is viewed: 

• Keep internal and external conversations from becoming negative: At first, Myrna’s friends heard only the heartache about her situation. They didn’t know what to say back. She learned to simply thank them for their thoughtfulness and turn the subject into a more enjoyable topic. 
• She changed the standard term “caregiving” to “care-living” in her life: To her, caregiving feels like a heavy, burdensome job whereas “care-living” is hopeful, lighter, and feels more like a choice. She feels like this change in perspective alone would help thousands of care partners face each day with less dread and feel a little more in control of their destiny.  
• Create a “Ta Dah” list along with your long To Do list, recognizing the more positive things in life and not just a cumbersome list of things that need to be done. 
• Find “invitations” to interact lovingly, slow down, and appreciate: Life circumstances can’t be changed, but our words can. With transformative words that promote positive thinking, understanding, and hope, those with dementia will be respected for who they were, who they are, and who they can still be. For those on the other side of dementia, words can encourage strength and courage for the days ahead.  

Katya De Luisa Agrees About the Power of Communication and Explains How It’s Not Just Words 

Katya De Luisa also discusses communication with a loved one who has dementia. She explains how “(e)very language uses words to communicate. However, words are not our first language. Before we understood the meaning of words, we thought in images.” Therefore, Katya believes that words must be converted to images by the brain and communicated keeping this in mind. She says that even for someone with dementia, “(w)ords also depict and elicit feelings. Depending on your tone of voice, the word can imply different meanings. If you include your facial expressions and body language, the significance of what you are saying can be interpreted in many different ways.” So be cognizant about things like tone of voice, facial expressions, and body language when communicating with a loved one who has dementia.   

When it comes to communication, De Luisa also states that “(k)eeping a person with dementia happy or peaceful keeps up levels of the neurochemicals that prevent depression and the emotional imbalances they commonly experience.” So this is important as well. Read more about this here.  

Tips for Positive Communication with a Loved One Who Has Dementia 

Rethinking your listening and speaking strategies can help you communicate with a person who has dementia. Here are some tips:  

• Speak calmly: Be aware of your nonverbal cues. Keep your body language relaxed. 
• Offer comfort: If a person with dementia is having trouble communicating, let him or her know it’s okay and provide gentle encouragement. 
• Be patient. Take time to listen and allow time for the person with dementia to talk without interruption. 
• Show respect: Avoid baby talk and diminutive phrases, such as “good girl.” Don’t talk about the person as if he or she weren’t there. 
• Keep it simple: Break down requests into single steps. Use short sentences. As the disease progresses, ask questions that require a yes or no answer.  
• Offer choices when making a request.  
• Use visual cues: Sometimes gestures or other visual cues promote better understanding than words alone.  
• Avoid criticizing, correcting, and arguing: Don’t correct mistakes, even glaring mistakes such as believing a deceased loved one is still alive. Avoid arguing when the person says something you disagree with. 

The challenges of communication evolve as dementia progresses. You will likely find that nonverbal communication with your family member or friend — such as touch or the comforting sound of your voice — will become more important and more meaningful. 

Plan in Advance for Your Loved One with Dementia 

The Farr Law Firm is dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect your family’s assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who has been diagnosed with Alzheimer’s or another form of dementia, please call us to make an appointment: 

Northern Virginia Elder Law: 703-691-1888 
Fredericksburg Elder Law: 540-479-1435 
Rockville Elder Law: 301-519-8041 
Annapolis Elder Law: 410-216-0703