Florida Gulf Coast Chapter

 

Highlands, Hardee, Hendry & Glades Counties

May 2013

In This Issue
Support Groups
Purple Ribbon Task Force Survey
Care for the Caregiver: Caregiver Burnout
Genes and Alzheimer's
Caregiver Jewels: Travel Tips for Early Stage
Create a Walk Team
Calendar
  
May 30, Memory Mobile: FREE memory screenings and care consultations on the Memory Mobile at the 2013 Brighton Health Fair, Florida Seminole Veteran's Building, 800 East Harney Pond Road, Okeechobee, FL, 10:00 a.m. to 2:00 p.m. For more information contact Barbara Boling, 863-763-0271. 
Support Groups

Alzheimer's Association-Florida Gulf Coast Chapter affiliated support groups are for family members, caregivers, and others interested in learning more about Alzheimer's disease. Meetings are open to everyone and free of charge. Support group facilitators have received training as required by Chapter and National Alzheimer's Association standards. For program information and to verify meeting dates, times, and locations, please use the telephone contacts listed below. For other questions or for respite care information so you can attend a group, call your local office or 1- 800-272-3900.

 

Message Boards: The Alzheimer's Association message boards and chat rooms are your online communication forum. Our message boards have over 9,000 registered members from around the United States, and many more people who simply browse the stories and information that is offered 24 hours a day. Join the Alzheimer's Association online community.

 

Caregiver Support Group

Florida Hospital Heartland Medical Center

Faith Community Nursing Building

4635 Sun N Lake Blvd. Sebring, FL 33872

4th Wednesday of each month, excluding major holidays, 2:00-3:00 p.m.

Co-facilitators: Stefanie Thompson & Chris Wilcox

For more information call 863-292-9210.

Purple Ribbon Task Force 

The Purple Ribbon Task Force was created by the Florida State Legislature and approved by the Governor to create a comprehensive state plan to address the growing public health impact of Alzheimer's disease and identify ways to meet the needs of individuals with Alzheimer's disease and related dementias and their caregivers. 

  

The task force, of which the Alzheimer's Association - Florida Gulf Coast Chapter is apart of, created five surveys. Each of the five surveys is tailored to the experiences of a specific group of individuals, including 1) people with Alzheimer's disease or related dementias; 2) family caregivers; 3) family and friends; 4) healthcare providers and paid caregivers; and 5) policy, legal, education and other professionals.

 

To take a survey or get more information, go to 
Purple Ribbon Task Force Surveys.  

(http://elderaffairs.state.fl.us/doea/purple_ribbon_survey.php

 

For additional information about the surveys, please contact Dr. Darlene Heinrich at 850-414-2111 (heinrichd@elderaffairs.org). 


The surveys will be available online through

May 3, 2013.

Care for the Caregiver

Stefanie Thompson, Sr. Prog. Specialist, AAFGCC

Caregivers may find that with so many responsibilities self care is placed as a lesser priority than care of a loved one. Yet, staying physically and emotionally strong is key to healthier caregiving. To this end, this column is dedicated to health promotion and personal care for the caregiver.

  
Caregiver Burnout

Joel Carrier, Guest Columnist

Family Caregiver

Volunteer, AAFGCC 

  

Caregiver burnout. Google it: it's a real condition, at least according to WebMD, AARP, the American Heart Association and numerous other organizations and websites. Even Dr. Oz says so.

 

The signs are numerous, the symptoms similar to those for anxiety and depression. And if you're feeling the stress, you're not alone.

  

Whether you're a daughter or son, parent or spouse, sibling, or even a friend, if you're reading this, chances are you're one of more than 15.4 million Americans providing care to someone living with Alzheimer's disease. This means that you are partly responsible for providing 17.5 billion hours of unpaid care valued at $216 billion, according to the Alzheimer's Association 2013 Facts and Figures report.

 

That's a big responsibility.

 

I get it: Caring for someone with Alzheimer's disease can be overwhelming at best and, if you're like many other caregivers, tending to yourself is last on your ever-growing to do list.

 

But take a moment to think through what would happen to the person for whom you're caring for if you're suddenly not there. What value do you place on your role as caregiver?

 

A lot, obviously, or you probably wouldn't still be reading. 

 

Click here to read the full column including tips 

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Genes and Alzheimer's

The 23 human chromosome pairs contain all of the 30,000 genes that code the biological blueprint for a human being.  

 

There are two categories of genes that influence whether a person develops a disease: (1) risk genes and (2) deterministic genes. Researchers have identified Alzheimer's genes in both categories.

 

Risk genes increase the likelihood of developing a disease, but do not guarantee it will happen. Researchers have found several genes that increase the risk of Alzheimer's. APOE-e4 is the first risk gene identified, and remains the gene with strongest impact on risk. APOE-e4 is one of three common forms of the APOE gene; the others are APOE-e2 and APOE-e3. 

 

Deterministic genes directly cause a disease, guaranteeing that anyone who inherits one will develop a disorder. Scientists have found rare genes that cause Alzheimer's in only a few hundred extended families worldwide. These genes, which are estimated to account for less than 5 percent of Alzheimer's cases, cause familial early-onset forms in which symptoms usually develop between a person's early 40s and mid-50s.
 

The Genetics of Alzheimer's
The Genetics of Alzheimer's
  
Learn more:
(approx. 14 min.)

Overview: Is Alzheimer's inherited? In this digital video John Hardy, Ph.D., of the National Institute on Aging, explains how genes cause disease, the difference between deterministic and risk genes, and which genes of each type are implicated in early-onset and late-onset Alzheimer's.

Caregiver Jewels
Emily Reese, Program Specialist, AAFGCC

May Tip
Travel Tip for Early-Stage Alzheimer's

  

A caregiver in planning for a cruise with their loved one went to a local hospital and asked for a couple of plastic patient wristbands. (Every hospital may not be as accommodating). She then wrote her husband's name on the band, cruise ship name and cabin number.

 

The husband wore the waterproof wristband throughout the cruise, which provided him an easy memory cue if needed but also a layer of safety for shore excursions if he became separated from group.

 

This tip could also be applied to travel tours (name of Travel Company and cell phone number) and airline travel (airline name, flight number and gate).

 

People with mild memory loss can enjoy travel but careful planning is essential and often a travel companion is recommended. For people with more advanced memory loss, travel may no longer be wise. The change in routine, crowds, noisy situations can trigger agitation and disorientation (even in familiar places).

 

Planning carefully can help ensure a pleasant travel experience for someone with mild memory loss.

  1. Keep it simple! Avoid itineraries where you're in a different place every night. Try to book a direct flight.
  2. Don't try to fit too many activities in one day and schedule rest periods.
  3. Write down travel plans, i.e., flight details, airline phone numbers, hotel addresses and phone numbers, confirmation numbers, etc., and include a list of emergency contact numbers. Provide a copy of this list to family and friends and keep a copy with you.

For more travel tips please click here.

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About this column

 

Caregiver Jewels is a column featuring caregiving tips by family and professional caregivers throughout our 17 county service area.  These "golden nuggets" represent caregiving strategies and tricks of the trade.

 
For the column to be a success we need your input!
It may be a "golden nugget" you say to get your loved one to attend a program or an activity to redirect their attention. Whether your tip is a diamond, emerald or ruby - all are valuable! So, please share the wealth!
Send your tip to reesee@alzflgulf.org or contact your local office.

 

Note: The information in this column is for informational purposes only and is not a substitute for professional or medical advice, diagnosis or treatment.

Create a Walk Team
For the 2013 Walk to End Alzheimer's 
FM Walk
Click on the image to be directed to the registration page.
  
When: Saturday, October 12th Registration begins at 9:00 a.m. Walk begins at 10:00 a.m.
Where: Downtown Circle Park,
N. Ridgewood Ave, Sebring, FL

For more information contact: Rachel Farinas at
727-259-2317 or  farinasr@alzflgulf.org.
If you have questions, concerns or just wish to talk to someone please feel free to contact us. 

Sincerely,
  

Stefanie Thompson and Chris Wilcox

Program Specialists

Alzheimer's Association Florida Gulf Coast Chapter
Sebring Office

Email: thompsons@alzflgulf.org / wilcoxc@alzflgulf.org 

Office: 863-292-9210

Fax: 863-292-9603

Website: www.alz.org/flgulfcoast

Alzheimer's Association - Florida Gulf Coast Chapter
Chapter Headquarters, 14010 Roosevelt Blvd., Suite 709, Clearwater, FL 33762 Telephone: 727.578.2558

National Headquarters-Alzheimer's Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601

Alzheimer's Association is a not-for-profit  501(c)(3) organization 2010 Alzheimer's Association. All rights reserved. 

24/7 Helpline: 1.800.272.3900