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Sharing information to make everyone more comfortable

Fiona’s Story

Fiona was diagnosed with posterior cortical atrophy (PCA) in 2017. It took a while for her to be diagnosed, as PCA is a rare form of dementia. As the disease progressed, Fiona and her family found that many people, including those with personal or professional experience with dementia, were surprised by some of the challenges Fiona faced.

They expected her to be struggling with her memory and were taken aback by the fact that in the earlier stages of the disease, her memory was fine; her difficulties were primarily spatial or visual. She would struggle to see the food on her plate, or to follow an instruction such as “step forward.”

Inspired by a suggestion in an online PCA support group, Fiona’s daughter wrote a simple document that explained the challenges Fiona was facing. Written in Fiona’s voice, it explained some of the difficulties she encountered and how to help her adapt to them. For instance:

“I struggle to see light objects on a light background, or dark objects on a dark background. Contrast makes it easier for me: I find it easier to eat light-coloured food from a coloured plate than from a white plate.”

According to Fiona’s daughter,

“By sharing this document ahead of time, everyone is more comfortable. Someone inviting mom over for lunch could make sure that her plate was higher contrast, and she would have an easier time eating, without having to explain over lunch why it was difficult for her to eat.”

As Fiona’s condition has evolved, so has the document. A simple version helps her friends know what to expect when they visit. A slightly more detailed version shared with the organizer of a choir for people with dementia helped her to adapt the environment and activities to Fiona’s needs.

A much more detailed version has been invaluable when Fiona meets new healthcare professionals for the first time, whether a massage therapist, a speech pathologist, or a new family doctor. Someone from Fiona’s family always sends the document by email ahead of the first interaction and offers to talk about it.

Though Fiona’s family were spurred to write this document by the lack of familiarity with rare forms of dementia, they feel this kind of document may be helpful to anyone with a dementia diagnosis who is navigating new settings.

“While I understand that sometimes the person diagnosed with dementia may not initially want to share the diagnosis too widely, once the person is ready to do so, this kind of document, shared carefully, may in fact help to make the person with dementia, the caregiver, and others more comfortable.”


Share the diagnosis with others

Sharing the diagnosis helps others to understand and helps you and the person with dementia feel more comfortable. Read the article, sharing the diagnosis with family and friends.