Florida Gulf Coast Chapter

 

Charlotte and Desoto County Update 

December 2013
In This Issue
Support Groups
Early Stage Programs
Holidays
Thank You!
Number of Gene Variants Linked to Alzheimer's Disease Doubles
The Genetics of Alzheimer's
Help Identify Risk Genes
Care for the Caregiver: How Heavy is This Glass of Water?
Calendar
All programs are free to attend unless otherwise specified.

 

December 3, Caregiver Education Program, Basic's of Alzheimer's Disease and Related Dementia, Desoto County Public Library, Arcadia, 1:00 p.m. - 3:00 p.m. For more information please call 941-235-7470.

 

December 9, Caregiver Education Program, Basic's of Alzheimer's Disease and Related Dementia, Hope Family Adult Day Care, Punta Gorda, 10:00 a.m. - 12:00 p.m. For more information please call 941-235-7470. 

 

December 17, Caregiver Education Program,

Celebrating the Holidays and Safety in the Home, Punta Gorda Public Library, Punta Gorda, 2:00 p.m. - 4:00 p.m. For more information please call  941-235-7470.

 

December 19, Caregiver Education Program, Activities at Home, Village Place Assisted Living Facility, Port Charlotte, 10:00 a.m. - 12:00 p.m. For more information please call 941-235-7470. 

Support Groups

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.

  

For program information and to verify meeting dates, times, and locations, please call 941-235-7470.

 

Royal Palm Retirement Center

2500 Aaron Street, Port Charlotte

4th Tuesday at 10:00 a.m.

Facilitator: Linda Howard

 

South Port Square (Harbor Terrace)

23033 Westchester Blvd, Port Charlotte

3rd Tuesday at 3:00 p.m.

Facilitator: Melissa Vanderbilt-Bestor

 

Saint Maximilian Kolbe Catholic Church

1441 Spear Street, Port Charlotte

4th Thursday at 2:30 p.m.

Facilitators: Judy Jahn, Irma Nin

 

Port Charlotte United Methodist Church

21075 Quesada Avenue, Port Charlotte

3rd Thursday at 3 p.m.

Facilitator: Linda Howard

 

Charlotte Harbor Healthcare

4000 Kings Highway, Port Charlotte

2nd Friday at 10:00 a.m.

Facilitator: Linda Howard

 

Life Care Center

450 Shreve Street, Punta Gorda

3rd Monday at 3 p.m.

Facilitator: Kelly Christie

 

Punta Gorda Isles Civic Association

2001 Shreve Street, Punta Gorda

2nd Tuesday at 3 p.m.

Facilitator: Amie Conti

 

Desoto County Public Library

125 N. Hillsborough Avenue, Arcadia

1st Wednesday at 11:00 a.m.

Facilitator: Linda Howard

Early Stage Programs
BASE with AA logo If you or someone you care about is in the early stages of Alzheimer's disease or a related dementia please call our office. We have resources to help!  
One program, BASE (beginning Alzheimer's support and education) offers a place to learn and gain support from peers and professionals.
Holidays
christmas party The holidays are a time when family and friends come together and share memories, laughs and good cheer. But for families living with Alzheimer's, the holidays can also be a difficult time. Caregiving responsibilities layered on top of keeping up with holiday traditions can take its toll on the caregiver and the person with dementia. 
 
With some planning and adjusted expectations,  celebrations can be filled with joy and magical moments to cherish forever.

Adjusting expectations.
  • Familiarize others with your situation as well as with your loved ones. 
  • Give yourself permission to do only what you can reasonably manage.
  • Choose holiday activities and traditions that are most important to you.
  • Host a small family dinner instead of a throwing a big holiday party.
  • Consider serving a catered or takeout holiday meal. Many grocery stores and restaurants offer meals to go.
  • Start a new tradition. Have a potluck dinner where family or friends each bring a dish.
Maintain normal routines so that holiday preparations do not become disruptive or trigger confusion for the person with dementia. Remember, taking on too many tasks can wear on you and the person. So, keep it simple.
    
Keep holiday activities safe, and manageable.
and involve the person with dementia.
  • Bake favorite holiday recipes together. The person can stir batter or decorate cookies.
  • Play familiar holiday songs from their past (not your past).
  • Read cards you receive together. Reminisce about people using photos from picture albums to help trigger past memories.
Adapt gift giving.
  • Encourage people to buy useful gifts for the person such as an identification bracelet (available through MedicAlert® + Alzheimer's Association Safe Return®, www.alz.org); comfortable, easy-to-remove clothing; audiotapes of favorite music; videos; and photo albums.
  • Advise people not to give gifts such as dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment or pets.
  • Depending on his or her abilities, get the person involved in giving gifts. For example, someone who once enjoyed cooking may enjoy baking cookies and packing them in tins or boxes. Or, you may want to buy the gift and allow the person to wrap it.
  • Gifts for you: suggest a gift certificate or a day of respite. Ask for something that will help you out as you care for your loved one, like a cleaning or household chore service.

To learn more on this topic go here.

Quick Links
  
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These Programs Partially Underwritten Through the Support of
Thank You!
Lori Sims, Vice President Development
Alzheimer's Association- Florida Gulf Coast Chapter

Thank you to all Walkers, Families, Caregivers, Advocates and Friends who joined this year's Walk to End Alzheimer's!

Each of the 11 Walks was an immensely bonding experience that brought together thousands of people who raised funds for the Alzheimer's Association. We, at the Florida Gulf Coast Chapter, recognize that each gift represents a real person, with a unique story of hope, inspiration, and dedication.

We are most appreciative of those who shared their stories during the Promise Garden ceremony. Thanks to the community Walk chairs and the committees for their unwavering commitment.

Please visit our website, www.alz.org/flgulfcoast and click on Walk to End Alzheimer's and Walker News
to see the results of each Walk, along with special photos of those who participated. Also, for more in depth photographic coverage, visit our Facebook page. 
Number of Gene Variants Linked to Alzheimer's Disease Doubles
gene Scientists have discovered eleven new genes that may be tied to the late-onset form of Alzheimer's disease, a new study shows. Eleven gene variants had previously been linked to late-onset Alzheimer's, including the APOE-e4 gene that appeared to have the strongest impact on risk.

 

The study, a meta-analysis, International Genomics of Alzheimer's Project, finding these results, was published online by Nature Genetics. 
  
The International Genomics of Alzheimer's Project (IGAP) is a collaboration formed to discover and map the genes that contribute to Alzheimer's. The formation of IGAP in 2011 was supported by the Alzheimer's Association and the Fondation Plan Alzheimer.

 

This collaborative effort, spanning universities from both Europe and the United States, combines the knowledge, staff, and resources of four groups that conduct research on Alzheimer's disease genetics.

 

They identified as many new Alzheimer's-related genes in this one study as have been found in the last 15 years combined. The findings expand the scope of our understanding of Alzheimer's to new areas, including the immune system, where a genetic overlap was identified with other neurodegenerative diseases such as multiple sclerosis and Parkinson's disease.  This is extremely important work in taking our ability to detect and treat Alzheimer's disease to the next level. Identification of genes that contribute to Alzheimer's risk and influence the progression of disease may:

  • Help lead us to the cause of the disease.
  • Identify proteins and other new targets for drug development.
  • Provide genetic methods for determining which people are at greatest risk for Alzheimer's when preventative measures become available.

More details on the research findings

  • Pooling resources through IGAP, the collaborative team collected 74,076 patients and controls from 15 countries.
  • The researchers found genes that confirmed known biological pathways of Alzheimer's disease, including the role of the amyloid (SORL1, CASS4) and tau (CASS4, FERMT2).
  • Additional genes related to cell migration (PTK2B), lipid transport, and endocytosis (SORL1) were also confirmed.
  • Newly discovered genes involved in the immune response and inflammation (HLA-DRB5/DRB1, INPP5D, MEF2C).
  • New hypotheses emerged related to hippocampal synaptic function (MEF2C, PTK2B), the cytoskeleton and axonal transport (CELF1, NME8, CASS4), as well as myeloid and microglial cell functions (INPP5D).
  • The researchers say that one of the more significant new genetic associations was found in the HLA-DRB5 - DRB1 region, which plays a role in the immune system and inflammatory response. This region has also been associated with multiple sclerosis and Parkinson's disease, suggesting that the diseases where abnormal proteins accumulate in the brain may involve a common mechanism.

Learn more

The Genetics of Alzheimer's

The Genetics of Alzheimer's, 2010

Help Identify Risk Genes
In 2003, the Alzheimer's Association partnered with the National Institute on Aging to begin recruiting participants for the National Alzheimer's Disease Genetics Study, a federal initiative to collect and bank blood samples from families with several members who developed Alzheimer's disease late in life. The goal is to identify additional Alzheimer's risk genes. The study continues to seek participants.
Caregiver Jewels
Emily Reese, Program Specialist, AAFGCC

Caregiver Jewels is a column featuring tips from 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. 

 

December Tip

How Heavy is This Glass of Water?

 

A Young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, "half empty or half full?"

 

She fooled them all ... "How heavy is this glass of water?" she inquired with a smile.

 

Answers called out ranged from 8 oz. to 20 oz.

glass of water_Photo courtesy photos-public-domain.com
Photo courtesy photos-public-domain.com

 

She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm. If I hold it for a day, you'll have to call an ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all of the time, sooner or later, as the burden feels increasingly heavy, we won't be able to carry on."

 

As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better for each time we've practiced.

 

So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow.

 

(Jill Andrew, Alzheimer's Association support group facilitator at Superior Residence, heard this story during a training. The author is unknown.)

  

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

If you have questions, concerns or just wish to talk to someone please feel free to contact us. 

Sincerely,
  

Linda Howard
Program Specialist
Alzheimer's Association Florida Gulf Coast Chapter
Charlotte/Desoto County Office
4075 Tamiami Trail, Suite 2
Port Charlotte, Florida 33952
Email: howardl@alzflgulf.org
Office: (941) 235-7470
Facsimile:(941) 235-7473

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