By Simon Spichak, MSc | February fifteenth, 2023
Christiana Egi is the proprietor of the Alexis Lodge — a house to greater than 20 folks dwelling with dementia. However why cease there? Authoring youngsters’s books and internet hosting a podcast, she is continually rising her influence with regards to dementia consciousness and help for her neighborhood, youngsters and adults alike.
This text is a part of the collection Variety & Dementia, produced by Being Affected person with help supplied by Eisai.
Registered nurse Christiana Egi began Alexis Lodge to assist folks with dementia by offering personalised help and sources. This helped them preserve their every day routines, and dignity whereas serving to them really feel at house.
“I created a house the place this will probably be handled with respect, love and dignity,” she advised Being Affected person.
However when she realized many of the residents by no means obtained visits from their household as a result of stigma surrounding the behavioral signs of dementia, Egi stated, she needed to do one thing extra. She began to lift consciousness concerning the situation — particularly in Black communities — via youngsters’s books.
Centering dementia care across the affected person — not the illness
Egi moved to Canada after graduating from her nursing program. She spent a decade working within the disaster unit of a giant psychiatric hospital in Toronto. That’s the place she first began to see this stigma at work, she stated: She realized that many individuals with dementia would get readmitted to the hospital as a result of their behavioral signs weren’t being managed.
“There’s not sufficient supportive housing, they usually don’t get help or encouragement or take their medicine,” she stated. “That was after I determined that I used to be going to handle seniors, folks with dementia.”
Egi named her facility Alexis Lodge after her third baby. Whereas many long-term care amenities are giant, the Lodge is smaller and designed extra like a house than a care facility.
“There are many amenities that handle folks with dementia, however as a result of they’re large, they usually don’t have sufficient workers you discover that persons are rushed alongside,” she stated.
The benefit of a smaller facility is the flexibility to supply personalised care. “It could take one particular person an hour to dress within the morning, and one other particular person could not wish to do it in any respect so that you want that point to be supportive and inspiring,” Egi stated. This manner, they proceed doing on a regular basis actions at their very own tempo. A bigger facility may as an alternative rush to verify all residents dress by a sure time.
Alexis Lodge additionally helps them proceed doing the duties they struggled with at house on their very own. “Folks with dementia, loads of occasions are fearful of water,” she stated, including that it makes it more durable for households to handle getting them into the bathe. “Typically we even have somebody who hasn’t showered for a yr are available after which the workers will assist get them showering virtually every day.”
Egi is certain they really feel snug as a result of lots of the residents take into account the ability their house. The ability has 21 residents that stay there, and are in a position to proceed together with their every day routines. Meaning having a fridge the place they’ll seize snacks, a kitchen the place somebody may help them proceed cooking, and many actions. However sadly that doesn’t imply that the residents’ households will go to typically. “I can let you know that just about 70 % of their households don’t flip up,” she stated.
However even after establishing Alexis Lodge, she nonetheless noticed additional alternative to assist folks dwelling with dementia — right this moment and sooner or later. One distinction she felt she may make was giving younger folks higher instruments to grasp what was taking place to their older relations. So started her profession as a youngsters’s e-book creator.
Empowering youngsters to study extra about dementia
Egi describes caring for a member of the family as a difficult 24/7 job. Some folks may even really feel relieved when a beloved one is positioned within the house. It offers folks time to take care of themselves somewhat than at all times worrying about their beloved one. However they could additionally turn out to be hesitant to go to: “Some folks say ‘Oh, I don’t wish to see my mother like this’ or ‘I don’t wish to keep in mind them like this,’ in order that they don’t go to.”
In different instances, the behavioral signs of dementia result in rifts between relations. A cousin or mother or father that’s usually very calm may begin an argument that may be hurtful. But when folks knew that these signs are attributed to dementia, they might turn out to be extra prepared to go to.
“Some folks say ‘Oh, I don’t wish to
see my mother like this’ or ‘I don’t wish to
keep in mind them like this,’
in order that they don’t go to.”
Egi thought that demystifying dementia for kids may go a great distance towards educating dad and mom. “The books inform actual life tales, just like the worry an individual experiences when any individual [they know] is recognized with dementia,” she stated. “I wrote these books via the eyes of kids, and know that youngsters are an essential a part of the caregiving crew.”
After publishing her first youngsters’s e-book, A Rose for Grandma, Egi was featured within the native information.
“A household pal known as me and he stated I didn’t even know that dementia or Alzheimer’s impacts Black folks,” and even some nicely educated folks locally weren’t conscious that the illness may even have an effect on them, she stated.
Bridging the racial well being hole
Egi believes that medical doctors want to grasp the considerations of Black communities in order that they don’t miss indicators of dementia.
“The Black neighborhood can be a tradition that protects itself,” she stated. Historic biases could make Black folks much less more likely to inform medical doctors sure signs. “Possibly mother or dad has turn out to be aggressive, however they’re afraid to inform the whole lot [to the doctor] as a result of they assume the member of the family will probably be dedicated.”
This bias goes each methods. Black sufferers aren’t at all times despatched to see a specialist. Black persons are really two occasions extra probably to have dementia than a white particular person however sadly, don’t get the identical sort of care, analysis or sources,” Egi stated. Certainly, research present that Black sufferers usually tend to expertise discrimination at their physician’s workplace, resulting in a missed analysis.
This impedes the trail to correct — and protected — care for dementia signs like dementia-related aggression. hen an individual explains that their husband or spouse is appearing aggressive, Egi stated, some medical doctors will simply prescribe drugs with out digging into the foundation of the issue.
“The Black neighborhood are predisposed to hypertension, diabetes, coronary heart illness, and these are causes of vascular dementia and Alzheimer’s,” she stated. “If we all know the best way to mitigate these issues, you realize, then we’ll assist mitigate the prospect of growing dementia.”
“If we all know the best way to mitigate these issues,
then we’ll assist mitigate the
likelihood of growing dementia.”
In the meantime, Egi’s second e-book focuses on these threat elements in her second e-book which known as Unmasking Grandpa. The e-book emphasizes that “simply having sugar issues [as diabetes is commonly referred to in the community]” can have severe problems together with coronary heart assault, blindness, and amputations. “We don’t perceive how severe these conditions are, and we don’t handle them nicely.”
Via her multi-pronged strategy for bettering dementia care and consciousness, Egi hopes to make an influence within the attain of the illness — and its disproportionate burden on Black households.
