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When Caregivers Wonder What Their Loved Ones with Dementia Are Feeling

Employing strategies to help communicate may ease some worries

spinner image woman holding the arm of her father who is showing confusion and may have dementia
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“I wish I knew what was going on in his mind,” my mother would say about my stepfather. He’d be staring straight ahead, hands fidgeting on his wheelchair armrests, without a hint of facial expression. If he was hungry or bored or even in pain, she couldn’t tell. If she asked him directly what he was feeling, he’d just look at her blankly and then turn away without saying a word. 

Years before, when my stepfather was in the middle stages of his Alzheimer’s dementia, it had devastated her when he would yell at her or make wild accusations that she was ruining his life. But dealing with his lack of responsiveness in the late stages of dementia was worse for her. Now he seemed lost inside himself, and my mother felt helpless to reach him or understand what he was feeling.

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Psychologists and researchers have developed theories about the impact on family members of situations like this. In her many books, Pauline Boss, a leading family therapist, researcher and educator, coined the term “ambiguous loss” to describe the extreme stress family members feel when a loved one is present in body but seemingly absent in mind, as with advanced dementia. Likewise, Joan Monin, an associate professor at the Yale School of Public Health, and social psychologist Richard Schulz, director of the University of Pittsburgh’s Center for Caregiver Research, Education and Policy, have written that, if relatives believe a loved one is suffering but can’t figure out its cause or how they can relieve that suffering, then those family members suffer in kind. These psychological insights can be summed up simply: We hurt when the people we love are disappearing beyond our reach and understanding.

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Dementia Caregiver's Guide

The latest advice and resources to help you and your loved ones navigate a diagnosis.  

Real stories, resources, and advice

With its endless tasks and limitless sadness, dementia caregiving is hard enough. Caregivers don’t need to suffer more for their inability to read loved ones’ minds. How can they avoid the distress of feeling responsible for the people they care for without being sure about what they need or how to help them? Here are some ideas:

Take an analytical and strategic approach

Many dementia caregivers never quite get used to the ways their family members with dementia have changed. Their first impulse is still to talk to them as if they have the capacity to answer with the words and reasoning ability they had years ago.

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.

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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.

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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.

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