(Originally posted on Dementialettersproject.com March 2018)

Cor ad Cor. Heart to Heart. This was my college’s motto. As you walked campus you saw it on flags, in print materials, on our school’s website, and heard it from time to time in lectures and gatherings. I have not thought of the phrase in several years, until Monday, when it came rushing into my mind at the Alzheimer’s Foundation of America’s Educating America Tour stop in Boston. As I spoke with fellow conference attendees and listened to the presenters, this phrase was repeating itself in my mind. It was a mix of people and backgrounds at the conference. There were families having just discovered a loved one was diagnosed with dementia wanting to learn more, families who have lived with dementia for 15 years, professional and family caregivers, medical professionals, lawyers, care managers, and dementia specialists. There were individuals who knew little about dementia, those who are incredibly knowledgeable, and everywhere in between.

What bonded us was not our connection to dementia, but our desire to better ourselves and our understanding of dementia so that we could better love those that live with the various forms of the disease. We frequently hear in the dementia and aging world that we should not assume that the caregiver is a loved one of the person with dementia, that we may not love those we care for, yet isn’t the act of caring, love? Isn’t the desire to better understand dementia so that we can support someone with dementia and those that care for them an act of love? Our actions speak of our character and relationship with another person and making sure the person is safe, comfortable, and cared for by someone is an act of love. This word, “love” is thrown around so much these days I wonder if it has lost meaning if we have forgotten what love is and its many forms.

Each person I spoke with in Boston questioned their ability to care for their loved one. They worried they may never know enough, or be good enough in their role as caregiver. They feared their own diagnosis one day and the loss of those around them through their own forgetting and through another’s diagnosis. There are days in the life of dementia of doom and gloom, there are days of joy, and there are days of hope. Sometimes these feelings happen all at once. That is what I experienced on Monday. We fear what is to come, we enjoy the moments we have, and we have hope that as time presses on that our understanding of dementia, the way we care for those with dementia and the caregivers will improve, and maybe someday a cure, or at least a way to slow down the progression of symptoms for everyone with the various forms of dementia. Cor ad Cor.  Heart to Heart. That is what I witnessed. People, loved ones, seeking to remain in connection with those they care for in the best way our humanity will allow.