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Return to Caregivers a Focus During Alzheimer's Disease Month Overview

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Caregivers a Focus During Alzheimer's Disease Month

Breaking News - November 2005 - Week 2

(Nov 9, 2005)

Healthcare in  the News

-- An estimated 4.5 million Americans have Alzheimer's disease - a figure that has more than doubled since 1980. But that number only tells half of the story, according to the Alzheimer's Association.

Picture of a middle-aged woman and an elderly woman

For every person with Alzheimer's, there are one or more people dedicated to caring for them, often providing 24-hour, around-the-clock help as the patient grows less capable and more feeble.

Those caregivers face a life of dramatic highs and lows: swinging from the joy of knowing their loved one is home, happy and safe, to dealing with the frustration and fear of the increasingly erratic behavior of someone who is slipping away.

As medical knowledge of the disease has grown, so too have the resources available to caregivers of Alzheimer's patients.

November is National Alzheimer's Disease Awareness Month, and experts are using the month to urge caregivers to seek out the help that is available to them.

Finding Information and Resources

National Alzheimer’s Disease Month is an annual national observance that was established by former President Ronald Reagan in 1983. The observance was begun as a way to increase public awareness and federal research funding to find treatments and a cure for Alzheimer’s disease.

"One of the most important things someone can do is get accurate information about the disease, about the disease process, and what kind of helpful resources there are in their community," says Kathleen O'Brien, senior vice president of program and community services for the Alzheimer's Association.

The numbers showing Alzheimer's extended reach are striking. In a Gallup poll commissioned by the Alzheimer's Association, one in 10 Americans said they had a family member with the disease, and one of every three people knew someone with the disease.

Caregivers who are worn down by their service to a loved one can experience a number of physical and mental symptoms, including: anger and frustration; depression; fatigue; trouble sleeping; decreased appetite; estrangement from friends or relatives; and loss of interest in hobbies or enjoyable activities.

"There's a huge amount of physical toll and emotional toll that can take place," says O'Brien.

But there are three main ways to combat these symptoms, experts say: taking time to care for yourself; honing your skills as a caregiver to make the job easier; and learning how to ask for help.

It is crucial that caregivers be sure to take time out for themselves, or they risk burning out or potentially harming the person they care for through frustration or neglect.

"You need to take care of yourself first," says O'Brien. "If you don't care for yourself, you can't take care of someone else."

Caring for yourself can be as simple as taking five minutes out of your day to do a pleasurable activity, says Jeff Loomis, associate director at the University of Florida Center for Telehealth.

"They can listen to their favorite song, they can go outside and smell the fresh air," notes Loomis. "How effective is a caregiver running on empty? If they can find a way to recharge their batteries, they'll be better able to get back in the fight."

Most communities offer adult day-care services that will look after Alzheimer's patients for several hours, while caregivers can take the opportunity to relax or run needed errands.

Caregivers also can help themselves by using support systems, groups, and Web sites to get better at looking after their loved one.

"I'm a firm believer that respite care in and of itself does not solve the problem," explains Loomis. "Learning to do a task better, differently, can remove the stressors in their lives and perhaps free them up to do other things."

Learning Caregiving Skills Key

Improving your care-giving skills first means learning all about Alzheimer's, and the stages that your loved one will go through so you can anticipate problems.

"This is a progressive disease," remarks O'Brien. "The kind of care that someone needs is going to change over time, and is unique to every person."

After that, a person can work on improving specific skills. Training and coping skills come in handy for tasks as basic as giving a bath to a loved one, Loomis says.

Caregivers also need to remember to "share the care," O'Brien says. "That means asking for help, either with helping in the care or helping you. They could run an errand for you, go grocery shopping, help clean around the house."

When asking for help, caregivers must be specific.

"So many times, people will generically say, 'Let me know if I can help,'" says O'Brien. "The caregiver needs to say what help they need. It's very important that the caregiver learn how to ask, and friends and family learn how to help. It's a relationship."

Finally, and most important, caregivers must give themselves the benefit of the doubt.

"Sometimes it just helps to know at the end of the day you did your best, and next day you'll be back fighting the good fight," says Loomis.

Always consult your physician for more information.

For more information on health and wellness, please visit health information modules on this Web site.

Alzheimer's Disease Defined

Alzheimer’s disease is a degenerative disease of the brain that causes a gradual loss of memory, judgment, and ability to function socially.

According to the Centers for Disease Control and Prevention (CDC), it is the 11th leading cause of death for adults aged 65 and older. While the cause of Alzheimer’s disease still is uncertain, researchers agree that the risk of developing the condition increases as a person ages.

The disease is progressive, and often results in the following:

  • impaired memory, thinking, and behavior
  • confusion
  • restlessness
  • personality and behavior changes
  • impaired judgment
  • impaired communication
  • inability to follow directions
  • language deterioration
  • impaired visuospatial (relating to visual perception of spatial relationships among objects) skills
  • emotional apathy

Although there is currently no cure for Alzheimer’s, the Alzheimer's Association states that new treatments are on the horizon as a result of accelerating insight into the biology of the disease.

Research has also shown that effective care and support can improve quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.

Alzheimer’s is the most common form of dementia, a group of conditions that all gradually destroy brain cells and lead to progressive decline in mental function.

Vascular dementia, another common form, results from reduced blood flow to the brain’s nerve cells. In some cases, Alzheimer’s disease and vascular dementia can occur together in a condition called "mixed dementia."

Alzheimer’s disease advances at widely different rates, states the Alzheimer's Association.

The duration of the illness may often vary from three to 20 years. The areas of the brain that control memory and thinking skills are affected first, but as the disease progresses, cells die in other regions of the brain.

Eventually, the person with Alzheimer’s will need complete care. If the individual has no other serious illness, the loss of brain function itself will cause death.

The Alzheimer's Association is working to improve the lives of patients as well as to find a way to prevent the disease in the first place. Some of the progress includes:

  • Improved diagnostic tools that are helping providers to diagnose with more than 90 percent accuracy.
  • Identification of genes that may put people at increased risk for the disease.
  • A worldwide network of investigators and research centers involved in intensive studies on multiple fronts, including basic sciences, genetics, interventions, psychosocial issues, and caregiving strategies for diverse populations.
  • Critical research systems in place that support and coordinate clinical studies, and brain banks and cell repositories to facilitate sharing of donated tissues and genetic data - all to find answers faster, cheaper, and better.
  • Five FDA-approved drug treatments and additional medications in the pipeline.
  • New commercial applications of technology to provide greater independence and quality of life for those with Alzheimer’s disease.
  • Increased knowledge of what can be done to prevent or delay dementia.

Always consult your physician for a diagnosis.

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