Where to Begin Poetry Installation

An installation of Poetry

from the Rare Dementia Impact Study

Where to Begin is a poetry installation exploring what it is like to live with a rarer dementia. This installation opened during the National Launch of Rare Dementia Support Canada in December of 2022 and has been extended for the month of January, 2023. As part of the ESRC/NIHR (UK) funded Rare Dementia Support Impact Study people living with a rarer dementia participated in research poetry facilitated by poets Martha Gould in North Bay and Lawrence Wilson in Rye (UK). The poems presented in the installation continue a long practice of written and oral poetic forms that embody events and circumstances in our connected lives. The poems are the words of people living with rarer forms of dementia - affecting vision, language, behavior and memory, often at a younger age- and their families supporting them. The words in these poems describe an experience seldom shared and often hidden from view. They are honest and intensely personal account of what it is like to live with dementia. We invite all members of community to attend the installation, free of charge, to spend a moment with our participants and to hear their fear, courage and resolve. The installation features poems from the book There is So Much I Could Say (2022).

The extension of this installation is in honor of the month of January - Canada's National Alzheimer's Awareness Month.

To learn more about Young Onset Alzheimer's Disease and Familial Alzheimer's Disease please visit the RDS Canada Website.