All human beings share emotion.  We freely feel sad, happy, angry, excited, frustrated, proud, frightened, relieved, anxious, affectionate, embarrassed, satisfied, guilty, confident; and I could go on and on to list all the positive and negative feelings we experience. In a recent blog by Dr. G. Allen Power, he expresses a very powerful thought process and how people view a person living with dementia.  Although he focusses on the research on ECT (Electroconvulsive Therapy) used for dementia symptoms, this paragraph struck me as completely valid in my experience.

“We get angry, sad, frustrated or anxious, but people with dementia have “behaviors.” We go for a walk, do our “steps,” or get bored and leave, but people with dementia “wander” or “exit-seek.” We get restless when forced to follow other’s rhythms and schedules, but people with dementia “sundown.” We go to Costco and shop in bulk, but people with dementia “hoard.” And we don’t like being locked up, bossed around, or touched by strangers, but people with dementia get “agitated” and aggressive.” 

This common view is supported by the term Behavioral and Psychological Symptoms of dementia or BPSD.  This is not to discount how challenging it is for all personal and professional carepartners.   If we understand the true individual unmet needs behind 90% of what we call “behavior,” we would promote partnership instead of power struggles.  I find that most family caregivers respond to their own feelings of grief and frustration which can create the barrier of not truly listening to the person.  I also find that with many healthcare professionals, they respond to the ticking time clock of their shift, and the unreasonable expectations of their job duties. 

There is no possible way that we can establish good communication and a trusting relationship unless we start to accept the expressed feelings of people with dementia.  This begins with listening and taking time.  Not just listening but hearing the feelings of the person.  It’s common that the person with dementia may lose their ability to use their language to communicate.  We can most often successfully surmise someone’s feelings through facial expression, body language, gestures, and tone of voice.  It’s important to acknowledge or validate the person’s feelings.  The next step is to provide empathy or understanding.  This is successfully done through leading your statement with “I can imagine how you must feel…”  My experience shows that it works better than just “I understand.” This allows the person to own and express his or her own feelings.

A person with dementia will hold on to negative feelings longer than most, as the struggle to maintain self-control and self-esteem challenging.  It is up to us to offer validation and empathy then offer comfort, reassurance, and redirection to evoke positive emotion.  We want to be careful that we are not dismissing their feelings by changing the subject. 

I would like to ask all personal and professional carepartners to think about how you respond to a person with dementia who is expressing negative feelings.  Just think about what you would want and need in the moments you feel negative emotion.  I believe we all want validation and empathy, and we certainly don’t want someone to change the subject and feel dismissed.