Dignity and dementia: Roxanne Varey 4 years after diagnosis

Primary progressive aphasia 'a real kick in the stomach,' says woman living with dementia

It has been four years since Roxanne Varey, now 55, was diagnosed with early onset dementia. 

When it started, she had trouble with memory loss. Then, she would have trouble tying her own shoes. Now, Varey says she struggles when she reads and can't understand some people when they speak.

Varey said when it comes to reading, she has to opt for large text or poetry so she is not "bombarded" by text. 

"I just can't seem to decipher it," she said of large amounts of text.

Varey used to work in Regina. Now, she lives in Stavely, Alta. with her husband, a move made to be closer to grandchildren. 

"When I first received the [diagnosis for] frontal temporal dementia, it was a real kick in the stomach," Varey said. She withdrew into herself and began grieving. 

There are also behavioural issues which have arisen from the diagnosis. 

She said sometimes she will have the tendency to binge eat during the night, the behaviour she says has "no ground." 

"I do have more behavioural mood swings and I think a lot of that is borne out of frustration," Varey said. 

She is also concerned by behaviours which she calls "inappropriate" and potentially embarrassing. There's the possibility she may say something wrong or something sexual.

"I've even heard of eating off of somebody's plate — you lose your social cues," Varey continued. 

"It's more trying to maintain, for me, dignity and not be embarrassed."

It's a result of primary progressive aphasia, a degenerative neurological syndrome which can develop from stroke, brain injury or — in Varey's case — Alzheimer's. It impairs language capabilities over time. Life expectancy is less than 10 years.

She said her condition will likely get to the point where she is unable to verbally communicate.

Varey described how she struggles with word recall and an ever-shrinking vocabulary to CBC Radio's The Morning Edition on Monday.

Varey said she would like to see less stigma around people diagnosed with Alzheimer's.

"I want to see supports for people now and acceptance," she said.

She says the best way to achieve that is education and awareness.

"It's been difficult, I think because I'm just so young," Varey said.

"There were just a lot of plans and things like that. We, you know, you talk about wanting to travel but now even when we go to visit the kids, it's very hard for me to be gone much longer than a week."