World Alzheimer’s Month 2013

gopurpleoc_twitter_tile2I wrote a letter to the editor of our community paper about World Alzheimer’s Month. They published it Friday. Here it is for you to read.

September is World Alzheimer’s Month, making this a good time to talk about the stigma of Alzheimer’s and all dementias. First, to clarify, according to the 2012 World Alzheimer Report 2012, “Dementia is a syndrome that can be caused by a number of progressive illnesses that affect memory, thinking, behaviour and the ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia. Other types include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.”

Alzheimer’s is one of the most feared diseases with good reason. There is no cure, you lose who you are, you forget people and things you once knew and you worry what people will think about you. Whether you’re young or old, this is something that happens to “older” people and you don’t want to be classified as one of those. (FYI, Younger-onset or early-onset Alzheimer’s affects people as young as their 40‘s and 50‘s.) Besides, memory problems are the subject of countless jokes. Did you know Alzheimer’s is the only fatal disease people joke about? Who wants to be the butt of jokes?

Unfortunately the stigma prevents people from seeking a diagnosis and obtaining the help they need to continue to live a good quality of life. Some people are so afraid of Alzheimer’s that they refuse to seek a diagnosis. It is only once you have a diagnosis that you can start taking a medication that is thought to help slow the progression of the disease. Alzheimer’s cannot be cured, but the medications on the market today can help slow the progression from the point they are started. This means that if a diagnosis is put off for a period of time, during which there is a decline, progression will be slowed only from that point. Had a diagnosis occurred sooner, the decline would have been slower.

Many people, after receiving any dementia-related diagnosis, want that information kept secret from friends and family. This does nothing to help them or their family caregiver, generally their spouse or adult child. Caregivers need assistance to avoid stress, depression and caregiver burnout. The stress of trying to keep such a large secret is hard on both the caregiver and their loved one.

What can you do if you fear you have Alzheimer’s or another dementia? Get help. See your doctor. Call the Alzheimer’s Association’s 24/7 helpline at 1-800-272-3900. Tell others and reach out for help. You may think you are the only family dealing with this, but I can assure you that you aren’t. In fact, you probably know someone who is dealing with this today.

In honor of World Alzheimer’s Month, let’s erase the stigma.

Profile photo of G-J

About G-J

I am a caregiver for my 59-year-old husband, Steve, who was diagnosed with Mild Cognitive Impairment in December 2009. His employer put him on disability and he had to retire one year later when he couldn't return to work. I am also the mother to our son who is now a high school senior. We have a cat, Sagwa, who rounds out our family. In addition to blogging here, I volunteer at my son's high school in the scholarship office, teach a class I created called, "Keep Your Brain Buff" at our city's Senior Center, lead a writing group at the Alzheimer's Association, and advocate for people with all types of dementia. In November, I will be participating in my third Walk to End Alzheimer's.

6 thoughts on “World Alzheimer’s Month 2013

  1. Profile photo of PegiPegi

    Wondeful letter, you make so may excellent points. Thank you for putting out there for families to read and hopefully discuss. Well done.

    Reply
  2. Profile photo of ejourneysejourneys

    PS: I just read David Hilfiker’s (retired physician diagnosed with Alz.) latest post at http://www.davidhilfiker.blogspot.com/2013/09/invisibility.html — he writes, “I’d been invited to participate in a large panel discussion in a press conference announcing the formal release of the World Alzheimer Report 2013. The fourteen-or-so panelists were each given an embargoed copy of the report a few days before the conference and asked to comment. As I looked through the 92-page document, however, I didn’t find a single reference to mild cognitive impairment (MCI), to people who look like me.” He includes a link to the report, whose emphasis this year is on caregivers. Two commenters (so far) are caregivers to people with MCI.

    Reply
  3. Nic

    Reducing the stigma is so incredibly important. I see people living with this every day of my life, yet not a lot of people talking about it. It’s a difficult disease, so the more people are able to share their experiences, the better armed caregivers will be

    Reply

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