Alzheimer's: A devastating diagnosis for patients and loved ones.
by Catherine Morgan

Do you know someone who suffers with Alzheimer's disease?  Or someone who is a caregiver to a loved one with this devastating disease?  If so, you understand the heartache associated with an Alzheimer's diagnosis.

Who are we without our memories of past experiences?  For most of us, the though of losing our memories to Alzheimer's disease is horrifying.  But there is much more to Alzheimer's than memory loss.

From Rocks In My Dryer - What I'd Like You To Know: Alzheimer's...

A lot of people mistakenly think of Alzheimer’s as “loss of memory” and leave it at that. Unfortunately, the disease progresses beyond the memory. The victim regresses verbally, mentally and physically to the state of an infant. Eventually, complications end their life. That’s the sugar-coated picture. Each person’s journey through the disease process is different, usually taking years to reach its inevitable and tragic end.

There is no cure. Nothing can prevent it. Nothing can stop it once it starts. There are drugs on the market that can slow down the progression, postponing the inevitable, drawing the entire process out longer than it would otherwise take.

There is no treatment. There is no surgery. There is no prevention. There is no cure. Nobody recovers. Nobody goes into remission. Nobody!

. . .

Here are a few things you should know about Alzheimer’s Disease:
• It is the 6th leading cause of adult death in the United States.
• Someone develops Alzheimer’s every 71 seconds.
• Approximately 5.2 million people in the United States currently live with Alzheimer’s.
• Hereditary Alzheimer’s Disease can develop in persons as young as 30 years old.
• More women develop Alzheimer’s than men.
• By age 65 years, you have a 1 in 10 chance of getting Alzheimer’s.
• By age 80 years, that chance goes up to 50/50.

From Karen at Midlife's a Trip - What You Don't Know About Alzheimer's...

For years what I knew about Alzheimer’s could fit on the head of a pin. I didn’t really understand how this disease ravages a brain. I even remember joking about Alzheimer’s and using the phrase “a little touch of Al” to describe a moment of forgetfulness. But now with a mother and best friend afflicted with this dreadful degenerative disease, there’s little room to be flip and uninformed.

From Dr. Ann Louise - If Someone I Loved Had Alzheimer's...

Someone develops Alzheimer’s disease (AD) every 70 seconds. Already more than 5 million Americans live with this memory-destroying disease—frustrating for them, tragic for those who love them.

A slow, progressive brain disease, Alzheimer’s impairs language, perception, planning skills, and reasoning as well as memory. Forgetting where you put your glasses doesn’t mean you have AD, but not realizing that you wear glasses does!

The incidence of Alzheimer’s disease doubles every 20 years. Women are more likely to develop AD—and not just because they outlive men. Recent studies suggest that estrogen contributes to this disease.

From Amanada - Get Involved!  November is "National Alzheimer's Awareness Month" and "National Caregivers Month" ...

Did you know Alzheimer's is known as the "family disease" because it so deeply affects a patient's entire family? It's true. In fact, 87% of all Alzheimer's caregivers are family members: children, spouses, or even grandchildren and brothers or sisters of the patient. Did you know that, in 2008 alone, there were 9.9 million Americans that acted as caregivers to an Alz patient, providing a combined total of 8.5 billion hours of care? These numbers alone allude to the serious nature of caregiving and the intense connection that family members have to their Alz relative.

But sometimes, even though we know how important it is to raise awareness or support a cause, we don't quite know how to get involved. This is especially true if we're already busy with other health communities and causes. So, to make it easier for you to get involved I compiled a list of really simple, quick ways to get involved with Alzheimer's this month and encourage those in your health communities to do the same. You don't have to be personally tied to Alzheimer's to use your Health Activist skills to help the cause.

HBO's The Alzheimer's Project...

One of the most devastating forms of memory loss is Alzheimer's disease, an irreversible and progressive brain disorder that slowly destroys memory and thinking skills. Today, Alzheimer's is the second most-feared illness in America, following cancer, and may affect as many as five million Americans. As the baby-boom generation moves through retirement, that number could soar to more than 11 million by 2040, and have a huge economic impact on America's already fragile healthcare system.

While there is no cure for the disease, THE ALZHEIMER'S PROJECT shows there is now genuine reason to be optimistic about the future.

From the Alzheimer's Association -10 Signs of Alzheimer's...

Memory loss that disrupts daily life is not a typical part of aging. It may be a symptom of Alzheimer's, a fatal brain disease that causes a slow decline in memory, thinking and reasoning skills. Every individual may experience one or more of these signs in different degrees. If you notice any of them, please see a doctor. Learn how Alzheimer's affects the brain and take the Brain Tour.

How is Alzheimer's Diagnosed?

At the present time an autopsy is the only test that can confirm a diagnosis of Alzheimer's. The autopsy will show the typical signs of cerebral shrinkage and destruction of brain cells.

Alzheimer’s disease is therefore often diagnosed by a process of elimination. Your family doctor, or specialist neurologist or gerontologist, and their multidisciplinary teams include information from such things as:

  • A thorough medical history of the patient and their family history.
  • An assessment of the person’s mental and physical state.
  • Psychological assessment and testing.
  • A neurological examination and assessment.
  • Lab tests and brain scans.

Once a diagnosis is made it has it is usually 80% to 90% accurate. An autopsy is the only way in which the diagnosis can be confirmed.

Also See:

November is National Alzheimer's Awareness Month.  Has Alzheimer's touched your life?  How so?  Please share with us in comments.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

Comments

 

Recommended reading

 

Thanks Virginia.

Thanks for the links Virginia...I'll check them out.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

 

It is refreshing to see people talking about
Alzheimer's

In 2003 I left my job and life in Los Angeles to move south and take care of my Grandmother as she battled Alzheimer's. Being her caregiver completely changed and then defined me as a person. She passed away a month ago and grieving has consumed me totally. Which is weird because this disease is associated with a "long goodbye". And even though I said goodbye to a part of my Grandmother daily for years and years, when she did pass away I began to really mourn the loss of her that I never could while she was alive.

I wrote about my time with my Grandmother as a parallel to chronicling my battle with infertility. There was a beautiful 6 month overlap where I got to be a Mother and a Granddaughter.

I hope more people can share about their experiences with this disease. Here is a link to over 5 years worth of posts that I wrote. Some are happy, some are tragic, but this was our life together: http://creatingmotherhood.com/category/alzheimers/

 

Calliope

 

Thanks for sharing your story...

Thanks for sharing your story.  I think it is wonderful that you were able to chronicle those five years in words, and that some day your child will be able to benefit from those words.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

 

Dementia

Alzheimers is only one form of dementia.  My mother suffers from what primarily is Front Temporal Dementia, which doctors know very little about.  She is 61 and has had the disease for 10 years.  In my blog, I talk about my Mother, among other things.

Alzheimer's seems to be the catch all disease when it may be another form of dementia.

 

 

I agree...

I agree that Alzheimer's has become a catch all for diseases causing demintia.  The truth is, Alzheimer's can only be 100% confirmed from an autopsy. 

I was told that my gradmother had Alzehimer's over 15 years ago, after she died from bladder cancer.  She clearly suffered with some form of dementia, but I've always questioned the Alzehimer's diagnosis.  Unfortunitally, due to her age and  knowledge that she passed from bladder cancer, there was never an autopsy.

Thanks for sharing your story Jen.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

 

family history

 When I was battling breast cancer,  I used to joke and say my goal was to live long enough to get Alzheimer's, since I had watched my father and grandmother succumb to it.  Now that I've survived 14 years, and there's still no cure,  Alzheimer's is no joke. 

http://blog.darrylepollack.com/2009/05/memories-like-mine/


http://blog.darrylepollack.com/

 

Actually that is interesting

Actually that is interesting because my Mom is very concerned about getting breast cancer meanwhile her brain is dying.

 

My Mom

It has been a sad process and for me even harder because I live so far away from home.  My mom is in the Dominican Republic and my dad, along with another family member, help keep her safe from herself.  She used to love to clean her house, top to bottom with a hose; she loved to cook for my dad; she loved to entertain; and mostly she loved being with her grandkids...my kids.  Now she only really remembers my two oldest.  She has been on Aricept for a few years and it has helped to slow down the effect and her memory is pretty much the same, her mood is more manageable; but we know that there is no cure and while she may live another 10 or 15 years, her memory will continue to deteriorate and that makes me very sad.  I will see her in a few months...can't wait!

Thanks for raising awareness to this devastating mystery.

http://www.familyinshape.typepad.com

 

Thanks!

Thank you for writing on this. I'm always interested in diseases that affect the entire family and I can't think of another one that does in quite the same way that Alzheimer's does. I'm especially interested in women's health and this is quite a fascinating intersection of the two. Women, so often being the main repository for family memory and tradition, have so much responsibility (at times a joy, sometimes a burden) in that sense. What happens to the family when the wife/mother/grandmother loses her memories? Who steps up and how?

Always a... Willful Woman @ www.besidethestonewall.com Visitors always welcome! Bring your stories to share!

 

Alzheimer's, Dementia, CJD, and Cancer

My grandfather died physically healthy but a victim of Alzheimer's.  My family made the same mistake as most - thinking that home was the best place for him.  Decline tends to be much slower in well-structured facilities.  It is heart-breaking to see so many families make that same mistake and hasten the decline through denial of the patient's needs.

Sadly, one of the greatest satirists of our time, Terry Pratchett, has early onset Alzheimer's and his latest book Unseen Academicals shows where some of his thinking processes have weakened.  It doesn't have the sharpness of his previous books.  It is truly one of the saddest things to see.

One of the things about dementia is that it also includes most prion diseases.  They are on the uptick.  I have known 3 people who have died of CJD - and I live in Michigan, not the UK.  The decline is so fast that there is nothing that can be done.  I know that some of the same drugs being used for Alzheimer's are being used to treat CJD.  Sadly, both can only be diagnosed via autopsy.

The mention of cancer by several commenters has me wondering if there might be an effect from chemotherapy drugs that may trigger dementia in old age - since "fuzzy thinking" is part and parcel of what is now termed "chemo brain."  My grandfather was a coal miner and had been exposed to many hazardous materials.  I wonder how many Alzheimer's victims had environmental triggers that we don't know about.

Sorry if this seems a bit scattered, but the realities of this disease are devastating and even when faced with it most families do not cope well.  Most prefer to deny its realities instead of accepting what is necessary for the patient.

MLO / Melissa

Books, Movies, Games, Ovarian Cancer, and Life in General at http://www.mloknitting.com/