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Alzheimer’s Disease Genetics Study

I want to alert you to an ongoing clinical trial that is designed to identify the genes that are responsible for causing Alzheimer’s Disease. This could be important to all of us who are predisposed to Alzheimer’s by birth. The investigators are searching for families with multiple incidences of Alzheimer’s disease. The study sponsored by the National Institute on Aging (NIA) is ambitious and they are seeking 3000 participants. They are recruiting nationally.

The purpose of the Alzheimer’s Disease Genetics Study is to identify the genes that are responsible for causing Alzheimer’s Disease (AD). One of the ways in which the risk factor genes for late onset AD can be investigated is by identifying and collecting genetic material from families with multiple members diagnosed with late onset AD (over 60 years of age).

You can read more about the study by visiting the clinical trials page or read more specifics of the study on the next page.

Related content Are you Genetically Predisposed to Alzheimer’s Disease?

Detailed Description:

The purpose of the Alzheimer’s Disease Genetics Study is to identify the genes that are responsible for causing Alzheimer’s Disease (AD). One of the ways in which the risk factor genes for late onset AD can be investigated is by identifying and collecting genetic material from families with multiple members diagnosed with late onset AD (over 60 years of age). Families meeting the criteria will have any two living family members diagnosed with AD with an onset of age 60 or older and at least one other affected or unaffected relative willing to participate. Families will be evaluated for a medical diagnosis and other factors. If eligible, blood samples will be collected from the participants to establish cell lines. If one of the identified family members is deceased, DNA will be extracted and stored from autopsy samples. Qualifying families will have a minimum of 3 members participating in the study: any two living family members diagnosed with AD with an onset at age 60 or older and a third member who must have an age of onset greater than 50, if affected, and 60 or older, if unaffected. The goal is to recruit 1,000 families in three years. This research will include a collection of samples from ethnic/minority populations and other special populations, including African Americans, the Amish, Hispanics, Asian Americans, and Japanese-Americans. Persons interested in registering to participate in this study can call the toll-free NCRAD number 1-800-526-2839 for more information. Local study sites are located all over the United States, and arrangements may be made for eligible families who do not live near a participating site.

Local sites, including the NIA-sponsored Alzheimer’s Disease Centers, will collect clinical and demographic data from these families, and the sites will send coded data (without identifiers) to the National Cell Repository for Alzheimer’s Disease (NCRAD) at Indiana University. The biological samples and data from these families will be available to qualified researchers, who must sign a Materials Transfer Agreement (to protect the privacy rights of participants in this study and to agree to share the results of genetic analyses) before receiving DNA and data. An oversight committee known as the Cell Bank Advisory Committee (CBAC) and the Coordinator of the NIA Alzheimer’s Disease Genetics Study, Richard Mayeux, MD, Columbia University, will review and monitor the process of family identification and enrollment, data collection, and the establishment of cell lines. This repository of DNA and cell lines was developed in hopes of discovering risk factor genes that contribute to late onset AD.

Eligibility
Genders Eligible for Study: Both
Accepts Healthy Volunteers: Yes

Contacts
Contact: Study Coordinator 1-800-526-2839
alzstudy@iupui.edu

More Information

NCRAD: the National Cell Repository for Alzheimer’s Disease

Responsible Party: National Cell Repository for Alzheimer’s Disease (NCRAD) ( Tatiana M Foroud )
Study ID Numbers: IA0042, NIH grant U24 AG21886
First Received: July 14, 2003
Last Updated: February 20, 2008
ClinicalTrials.gov Identifier: NCT00064870
Health Authority: United States: Federal Government

Original Content The Alzheimer’s Reading Room

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Anti-psychotics may speed Alzheimer’s decline

Anti-psychotic drugs frequently used in nursing homes to treat aggression in Alzheimer’s patients don’t provide any benefit and seem to lead to a marked decline in verbal ability, a report says

Read the article at USA Today Electronic Edition.

 

Anti-psychotics may speed Alzheimer’s decline

Anti-psychotic drugs frequently used in nursing homes to treat aggression in Alzheimer’s patients don’t provide any benefit and seem to lead to a marked decline in verbal ability, a report says

Read the article at USA Today Electronic Edition.

 

Alzheimer’s: Understand and control wandering

One of the questions I am most frequently asked is if I am worried that my mother might wander away from me and get lost. Wandering is one of the more widely known behaviors of people suffering from Alzheimer’s disease. This article from the Mayo Clinic explains this behavior and some of the likely causes and remedies.


Source Mayo Clinic

Alzheimer’s: Understand and control wandering
Find out why people with Alzheimer’s wander and what you can do to keep them safe.

Alzheimer’s disease can erase a person’s memory of once-familiar surroundings and make adaptation to new surroundings extremely difficult. As a result, people with Alzheimer’s sometimes wander away from their homes or care centers and turn up — frightened and disoriented — far from where they started, long after they disappeared.

Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer’s display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It’s often an attempt to communicate after language skills have been lost.

Wandering may communicate something as simple as “I’m feeling lost,” or “I feel as though I’ve lost something.” It can also signal such basic needs as hunger and thirst, the need to void, or the need for exercise or rest.

Other causes of wandering:

Too much stimulation, such as multiple conversations in the background or even the noise of pots and pans in the kitchen, can trigger wandering. Because brain processes slow down as a result of Alzheimer’s disease, the person may become overwhelmed by all the sounds and start pacing or trying to get away.

Wandering also may be related to:

Medication side effects
Memory loss and disorientation
Attempts to express emotions, such as fear, isolation, loneliness or loss
Curiosity
Restlessness or boredom
Stimuli that trigger memories or routines, such as the sight of coats and boots next to a door, a signal that it’s time to go outdoors
Being in a new situation or environment

Tips to prevent wandering
Although it may be impossible to completely prevent wandering, changes in the environment can be helpful. For example, a woman who was a busy homemaker throughout her life may be less likely to become bored and wander if a basket of towels is available for her to fold.

People with Alzheimer’s often forget where they are. They may have difficulty finding the bathroom, bedroom or kitchen. Some people need to explore their immediate environment periodically to reorient themselves.

Posting descriptive photographs on the doors to various rooms, including a photo of the individual on the door to his or her own room, can help with navigation inside the home. Offering a snack, a glass of water or use of the bathroom may help identify a need being expressed by wandering. Sometimes the wandering person is looking for family members or something familiar. In such cases, providing a family photo album and sharing reminiscences may help.

Watch for patterns
If wandering occurs at the same time every day, it may be linked to a lifelong routine. For instance, a woman who tries to leave the nursing home every day at 5 p.m. may believe she’s going home from work.

This belief could be reinforced if she sees nursing home personnel leaving at that time. A planned activity at that hour, or arranging for staff to exit through a different door at the end of their shift, could provide a distraction and prevent the wandering behavior.

Make a safer environment
If wandering isn’t associated with distress or a physical need, you may want to focus simply on providing a safe place for walking or exploration.

Living spaces will be safer after you remove throw rugs, electrical cords, and other potential trip-and-fall hazards. Rearranging furniture to clear space can help. Childproof doorknobs or latches mounted high on doors help prevent wandering outside. Sometimes a stop sign on an exit door is enough.

Rooms that are off-limits pose a different problem. Camouflaging a door with paint or wallpaper to match the surrounding wall may short-circuit a compulsion to wander into such rooms. Night lights and gates at stairwells can be used to protect night wanderers.

Help ensure a safe return

The Alzheimer’s Association’s Safe Return program is designed to help identify people who wander and return them to their caregiver. Caregivers who pay a $40 registration fee receive:

An identification bracelet
Name labels for clothing
Identification cards for wallet or purse

Registration in a national database with emergency contact information
A 24-hour toll-free number to report someone who is lost
You can register someone by filling out a form online at the Alzheimer’s Association’s Web page or by calling (888) 572-8566.

 
 
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