The power of validating persons with dementia comes from the soul of interpersonal human connection, which is based in empathy. I was taught in my family of origin that the emotions of other people were scary and that not talking openly about emotions was a safer course. My mom and dad struggled to communicate about their emotional lives, even though both of them are very caring people and do almost everything in their lives that is important to them because they care about others. My mom’s emotions tend to be so intense that she cannot always talk about them. My father shies away from talking about his feelings and would rather talk about his thinking and doing.
Even so, by the time I was in middle school, I knew intuitively that I could fairly accurately perceive what others were feeling and how their feelings related to what they would say or do. Moreover, I could feel deep resonances in my heart when I read poems or saw movie clips that moved me. And I could use my own thinking to understand the thinking of others. These are basic skills that all empathic persons have. Empathy means having the ability to cognitively understand others, to think in terms of their thoughts, and to resonate with others, to feel an emotional echo of their emotions.
While studying neuroscience I learned empathy has a third dimension, we actually also experience the activation of mirror-neurons that fire in a pattern similar to the neuronal firing patterns of actors we see. So, seeing another soccer player kick a ball will activate similar neurons in my sensorimotor cortex. This means that caregivers will often experience similar expressions of helping in their own nervous systems when they witness helping behaviors that soothe pain and suffering.
The good news is that mindfulness practices can enhance all of these powers, and mindfulness can empower a caregiver to use empathy to fuel compassionate actions. When empathy is turned into compassion, the compassionate actions have protective benefits for the caregiver. This happens in our nervous system because empathy reflects or echoes both positive and negative emotions, which can leave an empathizing person feeling depleted, but compassion always feels like a reward. Compassion activates the part of brain that seeks and finds value in our environment.
Beyond my care for my grandpa, I have cared for patients with dementia in assisted living facilities and memory care units in need of validation. More often than not, the conditions of the facilities mean that caregivers working in them are stretched very thin. In the elder care industry, and in healthcare much more broadly, there is currently a shortage of direct care workers. Direct care workers are mostly women, and they tend to people in the facilities, taking care of their basic needs. Often these women are not trained very well, and sometimes they do not speak English well. This can mean that people with dementia cannot find caregivers who can regularly validate their feelings.
I remember a woman named Estelle I met in Western Oregon who was frantic and afraid. The caregivers in her facility were kind to her but unable to talk with her at length about her thoughts and feelings. Estelle’s dementia was not severe in terms of memory loss, but it was accompanied with paranoid thinking. Her son had placed her in the facility when she could no longer take care of herself. She told me story after story about how her son was after her money and why she could not trust him. I noticed and reflected back to her the fear and confusion I identified feeling. This encouraged Estelle to share more. She did not slow down a beat, and she launched into a story about the facility where she was storing dead bodies. I listened more deeply and asked questions, feeling unsure about what to make of these stories other recognizing that I needed to validate what Estelle was feeing. After a long visit going past an hour’s time, I left her feeling a bit overwhelmed and unsure what my role was in providing her with spiritual care. What might I do in response to these stories that I was not sure were true?
Later, I conferred with the social worker and nurse who also provided Estelle with care. They had more experience than me, and I needed there guidance. The three of us talked about Estelle’s stories and what she must be feeling about having control taken away from her. Estelle had always taken care of herself, and she was a tough lady. My clinical team and I also talked about how we could empathize with and validate her feelings no matter what stories we heard. Our nurse, a very experienced woman who had worked in a memory care unit before coming to hospice, explained how Estelle’s narrative of the dead bodies resembled how a Covid-19 quarantine unit might look to her. Estelle had just been on such a unit a few weeks before when she and several other residents of her facility had contracted the virus. Almost all of them had survived, but a few had not.
The insight of my colleague taught me that validation is about feeling what a person with dementia feels as closely as I can and then extending into their thought world to see their storylines as plausible. Then the compassionate action we take as caregivers is grounded in our connection with others as we resonate with their emotional experience and then think in their terms. Estelle and I became very close as I visited her more. She knew that I would receive whatever she shared with me. This built a sense of mutual trust and care.
