EODA Early Onset Dementia Alberta (EODA)
Early Onset Alzheimer’s Alberta (EODA) provides a voice for those families affected by Early Onset Alzheimer’s and Dementia. We have members in Calgary, Edmonton, Lethbridge and Red Deer and are working to reach out to others in the province. Officially, the diagnosis of “Early Onset” applies to anyone diagnosed before the age of 65, but most of our partners were diagnosed before the age of 60, and some of our group before the age of 50. All in the prime of their lives, at the top of their careers, many still raising children. They lose their jobs, their driver’s license, and their independence. No retirement for them, no golden years of travel for us. As caregivers we work to support our families, take care of our parents, our children and our spouses.
We are aware of and support continuing research, however our needs are more immediate.
While Alzheimer’s is devastating to everyone, there are issues which particularly affect us. EODA advocates for change. We want to better the care and lives of our partners and our families as well as pave the way for those who will follow.
Today the four (4) areas of concern we are focused on are as follows:
- Home Care: Differences in application from region to region, issues with the needs assessments and who may provide AHS supported care. Some regions in the province excel in the provision of Home Care support. How can we get other jurisdictions to follow the same best practices?
- Lack of services/programming: There is a need for full time, age appropriate community-based support. There are successful organizations in most communities (often senior’s centres), that offer extensive programming. If provided with adequate resources, these organizations could keep those with early onset actively involved in their community.
Eg: Full time Recreation Therapists at a senior’s organization could support individuals plus build capacity of family members and volunteers.
- Long term care: The majority of long term care facilities are not in the position to deal with younger people who have dementia and are still physically very active. Our goal is to keep our partners engaged and to channel their energies rather than medicating them. Assisted Living with a locked door does not equal Dementia Care.
- Diagnoses and Medical Support: Our partners were diagnosed with early onset dementia prior to the age of 65. In fact, the majority in our group were diagnosed in their mid- fifties. As a result, diagnosis can be difficult because most doctors don’t believe it is a possibility. Issues arise because the typical supports for dementia are based on the belief that patients (and their caregivers) are in their senior years, have adult children, are financially stable, and have retired.
5 Things People with Alzheimer's Want to Tell You
- I've been diagnosed, not defined, see the real me: "I am not a diagnostic or a statistic. I still have feelings, thoughts, dreams, hopes and plans. There are many things I can still do. I am not sitting in a wheelchair in a nursing home staring out the window—not yet. I am a vibrant, loving person. Always remember, I have Alzheimer's, it does not have me."
- I can't do this alone, help me: "I need you to help me find ways to succeed at helping others and in doing something significant with my life. I am very capable of putting thoughts together and expressing them. I sometimes need help understanding things, but that does not mean that I don't understand. I sometimes need help expressing things, but that doesn't mean I have no thoughts, and nothing to say. Help me when I need it, and let me do all I can, while I still can."
- I am worthy, respect me: "I need to feel that what I say and do matters. I have much yet to offer the world. In many ways, I have more to offer than someone who has not read the final chapter of their life yet. I have lived life, my life, and I am worthy of respect, just as I was before."
- I am scared, comfort me: "I am scared of the unknown. I don'tknow if I have six months to communicate, or six years. I worry about going to bed at night and whether I'm going to be as bad tomorrow. This disease is with you 24/7. It's my brain and I can't get away from it—it is a scary thing."
- I crave compassion, love me: "I need to feel loved and needed, and that my contribution to life matters and helps someone else. I need to feel loved and not rejected because of my diagnosis. I need people to meet and accept me where I am at, right now. It is important to understand that I don't understand. I don't have any idea why I forget some things and remember others. It's not intentional—I just don't have the ability to realize what I am doing wrong."
Alzheimer's Cafe in Lethbridge
The Alzheimers Cafe is held monthly in Lethbridge at the Pemmican Lodge. This is a casual get together, a chance to meet others and have a visit. NO stress, no commitment, nice people!
102 - 5th Avenue South
4th Monday of the month. The next get together is Monday 27 April 2015
Next meeting of Southwood
The next meeting of Southwood is
5 May 2015 from 7pm to 8:30pm at Southwood United Church, 10690 Elbow Drive SW Calgary
This meeting is open to those affected by Early OnSet Dementia/Alzheimer's (meaning a diagnosis before the age of 65). Caregivers meet in an informal and unfacilitated setting to discuss issues. Partners meet separately in a facilitated group.