Early Onset Alzheimer's Dementia

Here is a great post from www.mycarelink.net/forum
Richy, the moderator of our section on Early Onset Alzheimer's Dementia, shared this article that he found. Click here to read the Introduction to our series on EOAD.

Young-Onset Cases On the Rise, Experts Report

from Alzheimer's Association Newsletter, Winter 1993

According to doctors, the number of diagnosed cases of younger people with Alzheimer's disease (AD) is increasing, striking people at the peak of their career and childrearing years.

"While most people are diagnosed in their 60s, 70s and 80s, an increasing number are being identified in their 40s and 50s," says Leonard Berg, M.D., chair of the Association's Medical & Scientific Advisory Board, who refers to younger cases as "young-onset" or "early-onset" AD. Various estimates place their proportion at anywhere from one to 10 percent of all people with AD -- or from 40,000 to 400,000 people in the U.S.

Young-onset AD is not a new phenomenon. It's been around long before Alois Alzheimer discovered the debilitating brain disease in 1906. But in recent years researchers have made dramatic progress in their understanding of the nature and symptoms of Alzheimer's disease, contributing to the increase in diagnosed young-onset AD.

"We have a much better idea of the clinical picture of the disease compared to just 10 years ago," says Dr. Berg. "Because we're able to make a more accurate clinical diagnosis of AD, we now recognize it more readily in younger patients." A definitive diagnosis of Alzheimer's disease can only be achieved through examining brain tissue during an autopsy. As diagnostic techniques have improved, more older people are being diagnosed, as well, says Berg.

Another reason for the rise in young-onset cases: increased public awareness of AD. "Alzheimer's disease was not exactly a hot topic 20 years ago," says Berg. "But today, AD ranks with cancer and heart disease in terms of awareness and concern for getting the illness." A recent survey conducted by The Gallup Organization for the Alzheimer's Association found that one in three people say they know someone with Alzheimer's disease, and many are concerned about getting it.

The social toll of early-onset

The behavioral symptoms of AD are much the same no matter what the person's age. But the middle-aged person with AD is different from the older patient.

Unlike the older-diagnosed person who's approaching or past retirement, the younger person is often faced with having to quit his or her job early and resign from family responsibilities all too soon.

"There can be much more disruption to the family," says Casey Durkin, program director with the Cleveland Area Chapter, which currently runs two early-stage family support groups. Some of the participants in the groups have young-onset AD.

"Family members of the person struggling with progressive and irreversible memory loss may be confronted with issues of loss and role confusion much earlier than they had anticipated. The spouse, in particular, is faced with feelings of loss associated with companionship and partnership.

"Children, regardless of age, can withdraw, become angry, or at times even feel embarrassed. In some cases, the parents of the person with Alzheimer's disease are still living, and they may have to consider a caregiving role."

Hilda Pridgeon, a founding member of the Alzheimer's Association, knows first-hand the emotional and financial devastation of a young-onset diagnosis. She became her family's primary wage earner when her husband, Alfred, began showing signs of the disease at age 47. At the time of his diagnosis, she had a 12-year old son and two children in college. Alfred died 15 years later.

"It was a very difficult time," says Pridgeon. "It was a complete role reversal. I had to take on new responsibilities and carry through with the development of my family.

"When you're young you think 'One day I'll retire and enjoy the good life,"' says Hilda. "Nothing could have been more unexpected than my husband's young-onset diagnosis.
'Once we accepted his diagnosis, some other families and mine began to work to form one of the Alzheimer's Association's first chapters. It was good to be involved in a positive way about such a negative experience."

For more information on young-onset Alzheimer's disease or the Alzheimer's Association chapter nearest you, call 1-800-272-3900.
_________________
Alzheimer's Resource Center of Central Fla
http://www.alzheimerresourcecenter.org/

Prevent Falls in the Elderly

Q: I am so afraid that my mother is going to fall and break her hip! She falls all of the time, so far we have been fortunate; it's just bumps and bruises. Do you have any suggestions? JM

A: Hi JM,
I certainly do have a few suggestions! When I was providing care for the elderly falls were a common occurence.

Here is a post from mycarelink forum. If you have any further questions let me know ~ Dutchy

When a senior falls there are many things a family must take into consideration.

The first step in the process is to evaluate and eliminate the reasons why the senior is falling.


1. Environment- Remove throw rugs, or secure the edges. Remove anything else that might contribute to a fall. Keep the house free from clutter. Install nightlights or motion lights in hallways and bathrooms. If an elderly person can no longer walk safely to the bathroom at night place a commode by their bedside to help eliminate trips to the bathroom. Hand rails that will help an elderly person walk down the hall may also be helpful.


2. Confusion or lack of judgement-If your loved one has dementia or Alzheimer's and you believe their falls can be attributed to an increase in confusion or lack of judgement it is probably time to look into home health options or long-term care options. Your loved one needs assistance.


3. Weakness- Notify your loved ones physician to discuss possible treatments and therapies that are available to help your loved one. If the weakness is persistent and will be a chronic problem, you may also need to consider home health options or long-term care options. Often times the elderly person who feels weak may need a little bit of physical therapy to build up their strength.


4. Medication- if your loved one is falling and you believe it is related to medication you should consult their primary care provider and follow his/her instructions. You will need to monitor your loved one while you are in the process of adjusting the medications.

5. Journal- Try to keep a journal handy. Jot down when and where the falls occur. This may help you pinpoint the problem.



Falls in the elderly may cause head trauma, fractures, soft tissue injuries, joint stiffness, weakness, and lacerations. They may also lead to loss of confidence and self esteem issues. Taking the time to evaluate falls may help you eliminate them.

www.askdutchy.com

For every challenge in caregiving there is a way to make adjustments, find support or make the situation a little easier to cope with.

Sometimes it is just standing back taking a deep breath, re-thinking the situation and diving in and trying something new.

When providing care for someone with Alzheimer’s there are several things you should keep in mind.

The first is to expect the unexpected.

The second is to understand that adjustments will need to be made frequently.

The third is that you as the caregiver are going to be the one to make all of the adjustments.

The fourth is acceptance Alzheimer's is what it is. Alzheimer's is the result of the brain dying. (In the case of Alzheimer’s perhaps that should read, “It is what it isn’t)

Unexpected

Adjustments

Self-sacrifice

Acceptance

If it helps, draw yourself a little diagram and put this on your refrigerator.

If you challenged and need a few suggestions for coping with those challenges~ Ask Dutchy!

Early Onset Alzheimer's Dementia

" I don't want anyone to go through what Donna and I have gone through. If this article does no more than provide just one person with some direction through EOAD then it was worth the effort!" Richy age 50, Florida.


There are few words that can actually describe the devastating effects of Early Onset Alzheimer's Dementia. Often shortened to EOAD, this disease affects over 300,000 individuals and their families.

EOAD, strikes before age 65, when children may still live in the home, when their income is still needed to help the family meet their financial needs, when they are in the prime of their lives. While Alzheimer's is heartbreaking at any age, you can see why it would be even more so at an earlier age. To read more about EOAD

Several months ago "Pizzaaguy" joined www.mycarelink.net As we all began reading Richy's posts about his struggles to provide care for his wife Donna who started showing signs of Alzheimer's at the young age of 49, we realized that families who are dealing with Early Onset Alzheimer's Dementia have an overwhelming need for support.

You may have heard the old proverb that says, " You cannot understand a man until you have walked a mile in his shoes." . While I am most certain that Richy and his wife would prefer to travel down any other road, this is the journey they are on, this is a story that he has chosen to share.

There are several elements that make Donna and Richy's story perfect for helping others who are faced with EOAD. First is transparency in Richy's ability to open up and share "real" emotions. Then experience, life's best teacher. Richy chose to provide care for his wife until he was no longer able to keep her safe at home. So when he speaks of caregiver guilt and burnout and the financial struggles, he has lived and is still living what he talks about. But perhaps the most important element of all is empathy, Richy has a strong desire to help others through this process, inspite of the struggles he is challenged with.

Since there is a surprising lack of awareness concerning EOAD, many families who are experiencing this disease first hand tend to withdraw, instead of reaching out for the help they so desperately need. In an effort to support those families and let them know they are not walking down this path alone, we will be presenting a series of entries on EOAD.

Richy has also agreed to moderate a newer section on mycarelink.net's online support forum.

The section is appropriatley entitled Early Onset Alzheimer's Dementia.We will be presenting this infomation in the coming days. If you would like to know more of the story, please visit www.mycarelink.net
~Dutchy