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Dementia patient speaks out after study released in Grand Rapids

A new study recently released in Grand Rapids shows dementia patients don’t feel their voices are being heard. One woman living with the disease shares her insights

“I’ve been asked how I felt when I was diagnosed. It was relief. I was relieved to know what I had.”

Krissan Moss of Grand Haven is one of 55 million people worldwide living with dementia, a slowly progressive loss of brain function advancing through stages over time.

There are more than 100 types.

”Different dementias are different. Lewy Body, which is what I have, fluctuates. I may have a really great day; I may have not great days.”

Like many of the 65 people in the study release by the National Council of Dementia Minds, Moss says when she received the diagnosis, support resources were lacking, and she thinks the medical community needs more training.

“Dementia is no different than any other chronic illness and it needs to be managed.”

There are misperceptions of what dementia looks like in its early stages.

Co-workers even thought Moss was faking it to get disability benefits.

She says more public education is needed too.

“I have an invisible disability. Give me that grace if you would. Believe me when I say I can or cannot do something that day. Please appreciate that I’m doing the best that I can.”

She urges those diagnosed to join a support group immediately to work through practical and personal issues, and to feel some hope.

“I found that giving my life to despair just steals my joy so I’m not going to do that.” 

To get a copy of the report, please visit: https://dementiaminds.org/dementia-needs-analysis-report-request/

To see the video of the report with persons living with dementia, researchers, doctors and program consultants, please visit: https://f.io/URfpRQ45

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