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Early Onset Dementia Alberta: EODA.CA

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MarkShirlianneMark and Shirlianne- My name is Shirlianne and in 2010 and I was diagnosed with Early Onset Alzheimer's disease at the age of 48. My husband Mark and I shared many great years together and enjoyed many wonderful friends and experiences travelling around the world. In 2008 I was forced to leave my job because I was making financial errors that I had never made before. It seemed like my cognitive abilities were failing me. We suspected Alzheimers disease, but the numerous doctor’s appointments always resulted in the same answer: "No, Shirlianne is too young to have Alzheimer's disease. It’s just depression". It wasn’t until 2 years later that I received my diagnosis. My cognitive ability was steadily decreasing in 2011 and by 2012, I was experiencing the first of my delusions. In May, 2012 I had the first of 10 visits from a psychiatric nurse. This experience was of little help to us as there was no sharing of information. This lack of communication from mental health professionals extended to some of the doctors we dealt with as well. My delusions were worsening and causing me a great deal of anxiety and fear. At this point I am receiving 4 hours of home care and my husband is working up to 12 hours a day. My fears and anxiety are escalating to such a level that Mark contacts the psychiatric nurse who is unable to reach the doctor in charge. He is told to take me to an emergency room where I am given sedatives and sent home. My symptoms are worsening and Mark asks for more home care support. The case manager authorizes an increase to 6 hours a day and states that it is breaking her budget and that there will be no more increasing of home care hours. In February 2013 I leave the house on my own and get lost. Mark was advised to put me in care at a cost of $1,756, plus medication cost of up to $600 each month. I am placed in an assisted living facility and rapidly deteriorate. I lose my sense of boundaries and as a result am punched, slapped and pushed. The staff don’t know what to do with me and keep calling Mark for a solution. By September 2013, I am pacing up and down hall ways for 42 and 46 hours at a time, refusing to eat and losing massive amounts of weight. Mark and I meet the fourth social worker to be assigned to us, who openly admitted that she knows very little about Alzheimers disease. She later called Mark to say that he had to do something about me as I was a real problem. In October, I am attacked by another resident and am put under supervision. The next month I take a piece of toast from another resident’s plate and am punched in the nose …suffered a bloody nose and two black eyes. As a result of this incident, and others like it, the decision is made to send me to Villa Caritas. In late November 2013 I am placed at the highest level of psyche care in Edmonton and am still there till today. Because of my boundary issues, I continue to be hit, scratched, and bitten by the other residents. I have lost the ability to communicate and should be placed into complex care because of my needs. Unfortunately, we have been told that there are no beds available. As they need to free up beds at Villa Caritas, I may be placed in long term care which according to the doctor is insufficient for my current needs. This is my life with Early Onset Alzheimer’s disease and I am only 52 years old.

The following is a statement from my husband Mark. “Due to my wife’s vulnerability to other residents, and her declining physical, mental, and speech issues, long term care is not an option as far as I’m concerned, and I will do everything in my power to prevent Shirlianne’s care being compromised by the inability of the system to deal with her needs.

Issues: Appropriate programs and care facilities for our young population diagnosed with dementias. Diagnosis; medical services & education within medical community.

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