JOAN’S BLOG – THURS/FRI., NOVEMBER 18/19, 2010 – JOAN’S ARMY

Before I begin today, I need to return to the original question I asked at the start of Alzheimer’s Awareness Month. Who cares? Why is it so important to raise awareness of Alzheimer’s Disease? Although I have listed the reasons in numerous blogs, press releases, and e-mails, my participation in a Dementia family question/answer session at the Assisted Living building next door gave me a clear cut answer.

It is important to raise awareness because ignorance of every aspect of Alzheimer’s Disease is causing widespread denial among family members, resulting in their inability to communicate with their AD loved ones;  properly handle their loved ones’ personality changes and temper tantrums; advocate for better care and treatment of their loved ones’; and get help for their own volatile emotions. This appalling lack of knowledge, as well as inaccurate knowledge of the disease is rampant.

Denial that there is a possible dementia problem, and misconception that Alzheimer’s Disease is a normal part of aging, appear to be the two main stumbling blocks to family members seeking help. Fear of the unknown or even worse, fear about what they THINK they know about the disease, are causing this denial and refusal to get a proper diagnosis.

The family members with whom I met last night had accepted their love one’s condition. They were desperate for knowledge about every aspect of the disease and how it impacted both patient and caregiver. They listened carefully, asked appropriate questions, and were anxious for follow up information.

It was those who were absent who are the problem. One month of bombarding the airways and print media to raise awareness of Alzheimer’s Disease is a start, but is not going to be effective in the long term.

WE NEED:

Extensive, ongoing training for all healthcare professionals – from doctors to aides - to recognize dementia and how to communicate with patient and caregiver

Community Educational Programs – a close ended course of approximately 6 weeks, focusing on a different Alzheimer’s related topic each week. For example:

1. An overview of the nature of dementia/types of dementia/ specific brain changes related to Alzheimer’s Disease
2. Who gets Alzheimer’s Disease – not just elderly
3. Personality Changes
4. Rages and temper tantrums
5. Communication
6. Resources

Mentoring Programs– pairing a veteran caregiver with a “newbie” for a closed ended period of time ( 3 months?) to help them through the initial frightening trails on the Alzheimer journey.

An army of volunteers to spread education about Alzheimer’s Disease – one person, one piece of information at a time.

During the meeting, as is the nature of a professional educator (that would be me), ideas swirled through my head at break neck speed of the series of workshops I could write and present to help educate the public about Alzheimer’s Disease.

Thankfully, I came to my senses in the light of the next day. I cannot take on one more project. My hands are full to overflowing with caring for my husband, my father, my business, and my household. But I COULD raise that army of volunteers. I am spreading the word on my website, and will do so via e-mails, press releases, and networking, that we need volunteers to pass out informative flyers, tell a doctor, tell a friend, tell a stranger – that Alzheimer’s Disease is not normal aging, not just a disease of the elderly, and that there is HELP out there for patient AND caregiver.

To those of you who have gone above and beyond the call by speaking, writing, and giving radio interviews, I thank you. I am recruiting the rest of you to join “Joan’s Alzheimer’s Awareness Army”. It is simple. There are no oaths to swear; no uniforms to wear; no travel involved; no rigorous physical training; you don’t have to shoot anyone; and all are welcome to serve openly, regardless of race, religion, or sexual preference. All that is required is that you tell one person one fact they may not know about Alzheimer’s Disease. One person CAN make a difference.

Feedback to joan@thealzheimerspouse.com
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The Alzheimer Spouse LLC
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