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Health & Fitness

What the Alzheimer's Association Can Do For You

Dementia care resources from the Alzheimer's Association.

Caregiving for people with dementia is difficult, stressful, time consuming and emotionally hard. Yet one in five families will be touched by this devastating disease, and it’s most often family members who step up to provide care through the early stages and beyond. So I was surprised when I found out that the overwhelming majority of families do not know about the Alzheimer’s Association and the services it provides.

In the mid-1990s, I chaired the association’s training committee and worked for them as a volunteer trainer. I was also on their speaker’s bureau and helped provide programs for the families they served. I became friends with many of the staff, volunteered on the hot line and helped with support groups. I knew the Association and it’s employees very well, so I thought I was well prepared to write a short summary about resources now available through their office.  But having been away for quite a while, I decided to interview the staff about their current programs.   Maureen Charlton the coordinator of Care and Supportive Services, was nice enough to share their updated information for me.

Two supportive programs stand out in my memory as extremely helpful for new dementia caregivers. One is “the 800 number” that families can use for help and information on dementia caregiving from general care to emergency situations.

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Until recently, it was suggested that families call their local Alzheimer’s Chapter for information on support. However, the services through the chapter were not available 24 hours a day.

Maureen, a social worker, shared the new system with me. The National Alzheimer’s Association now provides assistance 24 hours a day, 7 days a week at 1-800-272-3900. Here families can ask questions regarding care and even specific information about long term care facilities in their own area. Maureen gets a summary of the 800 number calls for Northern Virginia, and can follow up with families to find out if their questions were answered or if they need additional help.

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The second program that always caught my interest is the MedicAlert + Alzheimer's Association Safe Return program, which is a 24-hour nationwide emergency response service for people with Alzheimer's or other dementias who tend to wander.

If the individual should wander away and become lost, caregivers can call a 24-hour emergency response line which will activate a network of individuals including the Alzheimer’s Association chapters, police and rescue services and others invested in returning the person safely home. People with dementia are given a bracelet, pendant or tag with personalized information and a 24-hour emergency toll-free number for anyone finding the individual to call.

Additionally, the Alzheimer Chapters continue to offer information on support groups, legal matters, care options, paying for care and safety of the individual with dementia. They also provide a wealth of information through their caregiver educational programs which can be specific to families or professional caregivers.  

The Alzheimer’s Navigator is a relatively new service which uses a questionnaire to help families map out a plan of approach to the provision of care.

Other resources on the national website include information on the ten warning signs, stages of dementia, how to deal with negative behaviors and how to improve communication with people who have dementia. There is also good information on how to provide appropriate activities.  Caregivers can find information on clinical trials.

One of the most interesting of the resources the National Association has made available, and one I participate in regularly, is the  Alzheimer’s forum for both caregivers AND people who are living with dementia themselves. There “newbies” will find hundreds of other caregivers willing to share their caregiving experiences, and offer support and the ability to respond to caregiver “rants”, which most of us have been guilty of at one time or another. The website for the forum is: http://www.alzconnected.org/

It is also worth mentioning that the federal government has recently passed the National Alzheimer’s Project Act, and is working to expand information and research on Alzheimer’s disease.

If you have a loved one with dementia of any kind, please feel free to use the resources I have listed here. The Alzheimer’s Association, both local (National Capital Area Alzheimer’s Chapter, 3701 Pender Drive, Suite 400, Fairfax 703-359-4440) and the National Alzheimer’s Association can be contacted at  1-800-272-3900.

Most of the local chapters will be sponsoring “Walks To End Alzheimer’s” in September and October. Contact the National Capital Area Alzheimer’s chapter at 703-359-4440 for more information. 

Stephanie Zeman MSN RN

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