When Caregivers Wonder What Their Loved Ones with Dementia Are Feeling

When neurologists, neuropsychologists and other professionals meet a person with dementia for the first time, however, they immediately begin evaluating their strengths and weaknesses with various types of thinking skills — attention, concentration, short- and long-term memory, language expression and understanding, problem-solving, etc. Those professionals often then make suggestions to caregivers about how they can best interact with that family member to communicate most effectively and bring out the best in them. For example, if the person with dementia has lost the ability to fully use and/or understand all the words they once knew, the neuropsychologist might recommend conveying the same meaning to them with different phrases to increase the likelihood of being understood. (“Bob and his family will be here soon. Our son is coming to see us. Soon, Bob, Jackie and our grandkids will have lunch with us.”)

Most caregivers are not trained professionals but do figure out through trial and error ways of playing to their family member’s remaining cognitive strengths. The key is for those caregivers to take an analytical stance toward that person, make a mental inventory of their thinking skills, and adopt strategies for speaking with them to maximize productive interactions.

Use physical clues and cues

Even if family members generally can’t read the minds of the people they are caring for, they can read their bodies — e.g., facial expressions, posture, glances — to tell if that person is tired, frustrated or in pain. For instance, whenever my stepfather grimaced, my mother knew he was in discomfort and ran through an inventory in her mind about what might be troubling him — e.g., bedsore on his bottom, the temperature in the room or the bland taste of the overcooked vegetables he was served in his nursing home. If he seemed distracted, gazing about, then she might assume the room’s noise or bright lights bothered him, or that he was too tired to pay attention to her.

Likewise, physical cues can communicate meaning to an individual who no longer understands many words or is slow in initiating actions. My mother could say three times, “Please pick up your foot” without being able to prompt my stepfather to place it on the wheelchair leg rest. But then she would tap his knee and he’d instantly move his leg.

Try not to project

Just because caregivers are in distress about their family member’s condition doesn’t mean that person is tormented by their diminished thinking skills or that their blank stares mean they are unhappy. Lack of responsiveness, a common dementia symptom, isn’t the same as lack of contentedness. Caregivers’ efforts do provide comfort even if a terrible disease now prevents their relative from saying so.

Trust your personal expertise

Even if caregivers sometimes feel uncertain about what their relative with dementia is feeling, they should be confident they have a better idea of it than anyone else does. Professionals are knowledgeable about the disease but not the background of who the person has been throughout their lives or the nuances of their everyday behaviors now. Caregivers are in the best position to use their observational powers, shared history and loving connection to respond in the most caring ways to their family member.