To Be Known

In my experience, people living with dementia will continue to express/exert their personhood all the way through the course of their lives. Innately, all of us do, but it seems there often is a purity and authenticity to this expression that develops as cognition declines.

Pillars of personhood, the unique characteristics and gifts of the self, will continue to be present, and care partners can build a relationship around these elements. But it requires that we hone our listening and perception skills, get rid of pre-judgements and limiting expectations, be intentional about meeting them in their reality and affirming/validating them there. We must train ourselves to look for any expression of personhood, to believe that we can find it, and when we see it, to affirm it immediately. In this way, we can show them that they are remembered, loved and appreciated precisely for being who they are.

When we behold something so sacred as the self, we should honor it, and be grateful to have seen it. And we should not try to fashion it into something our egos need it to be.

As dementia advances, personhood may manifest primarily as a sense of presence or a spiritual identity that we are able to perceive in quietness, through touch, or by the comfort we can share through a song, through movement, or through being with others who know and love them (personhood is intrinsically relational). In this way, innate personhood is honored, and they are never seen as “less than.” In fact, they are known, and to be known is always to be “more than…” more than a label that bears the name of a disease or disability. This is personhood at its most authentic, elemental level.

I don’t think we ever lose the desire, the need to be known. What a privilege can be ours: to demonstrate to others, through our empathy, compassion, validation, intentionality and care, that they are known.