What is Senior Gems?

End of Life Doula/Midwife

End of Life Planning & Coping with Grieving

Spring 2020 Vol. 23 No. 2

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Our Mission: To provide educational programs, support services and assistance to caregivers, families and individuals with Alzheimer’s disease and other dementia.

What’s Inside:

Executive Director Kathleen WintersBoard President Lori WilsonBoard Vice President Bill TuttleBoard Treasurer Rob MustachiBoard Secretary Terri OsteenBoard Members Michael Benetto Tyler Borowski Mary Darling Sharon Doncourt Ron Francis III Bobbie Miller Peg Pickett Alexander Powell Ed Spinks Dr. Mary StedmanEditor Bill TuttleDesign Crystal RodriguezContributing Authors James Finnegan Ralph Hartke Saundra Piercy Jennifer Selk

Administrative Manager Alicia VegeranoCommunity Liaison Teresa Haver 727-207-7377 Outreach@alzheimersfamily.orgCommunity Educators The Villages & Marion County Jackie Kuhn-Damron 574-721-1177 Jakuhn@alzheimersfamily.org Lake County & S. Sumter Jamilya Rahming 352-396-2614 LakeCE@alzheimersfamily.org Pasco/ N. Hillsborough/ N. Pinellas Marina McLoone 727-255-9766 PascoCE@alzheimersfamily.org

Contact Information Alzheimer’s Family Organization 461 Mariner Blvd. Spring Hill, FL. 34609

Telephone: 352-616-0170Fax: 352-616-0174Email: info@alzheimersfamily.org

www.alzheimersfamily.org

Vision StatementAll those with Alzheimer’s or other forms of dementia, and their caregivers, will have a better quality of life.

The “Caregiver’s Companion” is published quarterly by The Alzheimer’s Family Organization. The Alzheimer’s Family Organization disclaims any liability for damages resulting from articles, opinions, advertising, or representations expressed or implied in this publication. Any comments or claims are made solely by the individual author and do not necessarily represent the views of any other Alzheimer’s Family Organization member or other persons, living or dead.

All materials in this newsletter is offered as information to our readers. The Alzheimer’s Family Organization does not warrant, endorse, or recommend any provider, program, or product.

The Alzheimer’s Family Organization conforms to the Florida “solicitations of Contributions Act” pertaining to charitable organizations: “A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP FLA) REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.”

Image Credits: Pat Winters, Jackie Kuhn-Damron, Claudia Wolff, Cristian Newman, Katarzyna Grabowska, Lucas Vasques, Sergey Shmidt, Siednhi Leon, Magda Ehlers, Teresa HaverSpring 2020 Vol. 23 No. 2

Caregiver’s CornerBeverly Hartke and Alzheimer’s

Support Groups - Pages 4 & 5Page 7

Guest ArticleEnd Of Life Doula/Midwife

Page 8

From Your EditorWhat Is Senior Gems?

Page 10

Featured ArticleEnd of Life Planning and Coping with

Grieving

Page 12

Research CornerAlzheimer’s Disease Research

Page 20

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Event Re-CapThe Villages Alzheimer’s Family

Support Walk

Page 22

Alzheimer’s Family Organization

/AFO.FL

AlzFamilyOrg

Words from the Executive Director

Happy Spring!

The nicer weather is starting to come more often, daylight is getting longer, the flowers are starting to bloom, and the birds are chirping! We have now entered the next season of 2020. It is so hard to believe it is April already! Be mindful now that the opportunity to go walking and being outside is upon us (before the sweltering heat) for your loved one to wander. We have some wonderful ideas on how to be in tune with your loved one to be alert when wandering may occur. Be sure to reach out to your local community educator or our office at (352) 616-0170. We are happy to share ways to keep safety in place!

We just held our 8th Annual Alzheimer’s Family Support Walk at The Villages Polo Field with PARADY Financial/PARADY Care’s Foundation as our co-name sponsor for the 7th year since the inception of The Walk. There will be a re-cap in this newsletter on another page thanking all who made this such a success. It was very chilly and windy but that did not stop most people from coming out and having a great time!

We have had a change on our Board of Director’s as Helayne Celano, our Treasurer, has resigned to devote more attention to her own business and personal life. We thank you Helayne for your time, talent and devotion to the AFO and wish you well. We have brought on Board Rob Mustachi who has been voted in as the new Treasurer. We are excited to welcome Rob and look forward to his new ideas to help keep the AFO moving in the right direction. Welcome Rob!

Another change we have had at the AFO is the departure of Crystal Rodriguez, our Media Specialist. Crystal has left to pursue her career with the Chi Institute of Traditional Chinese Veterinary Medicine. Crystal is an avid animal lover and she felt this was a good fit for her. We wish her the best in her new endeavor.

With this change, I felt is would be more beneficial to use a large portion of her hours to hire a Pasco County Community Educator, who will also serve N. Pinellas and N. Hillsborough Counties. We welcome Marina McLoone on board and wish her well as she learns about the AFO and what we do to improve the lives of caregivers and their loved ones as they walk the journey of Alzheimer’s and dementia. Marina is very familiar with Pasco County and I believe she will fit in very nicely.

We have some very exciting events coming soon such as the Lip Sync Battle on May 30th which will be held virtually, Starlight Gala event hosted by Grand Living of Citrus Hills on June 13th and then our 3rd Annual Bowling Challenge on July 18th. In the fall we will have our 1st Annual Ride to Remember motorcycle run and our Holiday Palooza. A very busy time for us to pull all these events together. We love these events and very much enjoy meeting new people, bonding with our community partners and sharing a good time with a lot of laughs!

Please remember that we know that none of what we do would be possible without the support of our volunteers and community partners. Those that help with fundraising, hosting learning events, hosting support groups and all the other wonderful things that they do for us. As always, THANK YOU. Due to the COVID-19 outbreak, we will be postponing our Volunteer Appreciation scheduled in April to a later date.

May this spring bring you happiness and sunshine as you enjoy the positive moments with your loved one, and know when there are bad days, there is a support system waiting to help hold you up. You are not alone…

Executive Director

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Afo support groups

HILLSBOROUGHArden Courts of Tampa(Please Call To Make Appointment)14950 Casey Rd, Tampa, FL 33624Frontal Temporal Degeneration & Alzheimer’s 2nd Sunday of the month at 1:00 PMCo-Leaders: Mary Anne Upham 813-786-8388 Doris Hogan 813-486-0554The Colonnade at Northdale3401 W Bearss Ave, Tampa, FL 33618 2nd Tuesday of each month at 10:30 AMLeader: Wenona Spencer 813-961-1044

LAKEBridgewater at Waterman Village(Free Respite Care During Meeting)500 Waterman Ave, Mt. Dora, FL 327573rd Wednesday of the month at 1:30 PMCo-Leaders: Coleen Connolly 352-383-0051, x313 Chaplain Robert Nickell 352-383-0051, x229 Madison at Clermont650 E. Minnehaha Ave, Clermont, FL 347111st Wednesday of the month at 4:00 PMCo-Leaders: Paul Clews 352-241-0844 Ashley Alvarez Chapel of Christian Faith1401 Paradise Drive, Lady Lake, FL 321593rd Thursday of the month at 10:00 AMLeader: Martha Hyatt 352-748-7633Clermont Arts & Recreation Center 3700 S Hwy 27, Clermont, FL 34711 - Room 71st & 3rd Tuesday of the month at 4:00 PM Co-Leaders: Kristina Grasso 352-901-0380 Courtney Schmidt 352-901-3116 Cooper Memorial LibraryRoom 221 (upstairs)2525 Oakley Seaver Dr, Clermont, FL 347113rd Thursday of the month at 2:00 PMLeader: Christen Wilson-Lierman 407-557-0054The Cove at Tavares Village1501 Sunshine Pkwy, Tavares, FL 327783rd Monday of the month at 1:30 PMLeader: Amy Lesner 352-742-7111

Crane’s View Lodge ALF & Memory 2nd Floor Chapel1601 Hooks St, Clermont, FL 347114th Tuesday of the month at 1:30 PM Leader: Heather Carelli 352-901-0239

First Baptist Church of Leesburg /South Campus25900 US Hwy 27, Leesburg, FL 347481st Monday of the month at 2:00 PMCo-Leaders: Christen Wilson-Lierman 407-557-0054 Jamilya Rahming 352-396-2614 Lake Port Square (Must Call To Make Appointment)600 Lake Port Blvd, Leesburg, FL 34748Every Wednesday of the month at 1:30 PMLeader: Allison Church 352-728-8525, x232

Lakeview Terrace331 Raintree Dr, Altoona, FL 327022nd Thursday of the month at 1:30 PMLeader: Cheryl Fletcher 352-409-5360

Lake Ridge Village353 W Ardice Ave, Eustis, FL 327263rd Thursday of the month at 3:00 PMLeader: Carolyn Costello 804-615-1117

CITRUSCornerstone Baptist Church1100 W. Highland Blvd, Inverness, FL 344523rd Wednesday of the month at 1:30 PMLeader: Debbie Selsavage 352-422-3663

Crystal River Library8619 Crystal St, Crystal River, FL 344282nd Tuesday of the month at 1:30 PMLeader: Debbie Selsavage 352-422-3663 Senior Helpers587 E Gulf To Lake Hwy, Lecanto, FL 344611st Friday of the month at 1:30 PMCall Office for more information - 352-835-7191

HERNANDOAtria Evergreen WoodsPool Clubhouse7030 Evergreen Woods Trl, Spring Hill 346082nd Tuesday of the month at 1:00 PM2nd Saturday of the month at 4:00 PMLeader: Lori Wilson 352-596-2055 Bayfront Health BrooksvilleMedical Arts Bldg. – Ste.12017222 Hospital Blvd, Brooksville, FL 346012nd & 4th Monday of the month at 1:00 PMCo-Leaders: Donna Alford 813-469-5024 Bill Tuttle 813-712-9058 Bible Baptist Church15901 Little Ranch Rd, Spring Hill, FL 34610 2nd Tuesday of the month at 9:00 AMLeader: Sandy Locke 727-856-6815 East Hernando Library6457 Windmere Rd., Brooksville, FL 346022nd Tuesday of the month at 11:00 AMLeader: Glorea Charland 352-754-4043

Forest Oaks of Spring Hill8055 Forest Oaks Blvd, Spring Hill, FL 346061st Wednesday of the month at 11:00 AMCo-Leaders: Leigh Dingle 352-683-3323 Shabhan Blount AFO Office461 Mariner Blvd, Spring Hill, FL 346093rd Wednesday of each month at 1:30 PMLeader: Teresa Haver 352-616-0170

Northbrook Health & Rehabilitation575 Lamar Ave, Brooksville, FL 346012nd Tuesday of each month at 2:00 PMCo-Leaders: Janet Torcello, Megan Souza, Megan Mulock, Heidi Yerbury 352-799-2226 The Residence at Timber Pines3140 Forest Rd, Spring Hill, FL 346063rd Monday of the month at 2:00 PMLeader: Bill Tuttle 813-712-9058 Timber Pines Country Club(Gated Community – must register with Sue to attend) Lodge - Oak Room6872 Timber Pines Blvd, Spring Hill, FL 346062nd Thursday of the month at 10:00 AMLeader: Sue Simone 203-725-6888

North Lake Presbyterian Church975 Rolling Acres Rd, Lady Lake, FL 321591st Wednesday of the month at 1:00 PMLeader: Louise Shuey 352-753-82623rd Wednesday of the month at 1:00 PMCo-Leaders: Louise Shuey 352-753-8262 Don Dati 352-259-5363North Lake Presbyterian Church Early Stage Group (for early stage patients)Fellowship Center Room 2975 Rolling Acres Rd, Lady Lake, FL 321591st and 3rd Friday of the month at 10:00 AMLeader: Louise Shuey 352-753-8262Opis Bayview Center 301 S Bay St, Eustis, FL 32726 4th Thursday of the month at 1:00 PM Leader: Angela Jones 407-490-6765Osprey Lodge Assisted Living & Memory Care (Free Respite Care During Meeting)1761 Nightingale Ln, Tavares, FL 32778 3rd Tuesday of the monthAlzheimer’s Café: 11:30 AM - 12:30PMSupport Group: 12:30 PM - 1:30 PM Leader: Ruth Cantillon 352-253-5100

MARIONBrookdale Canopy Oaks (Please RSVP)9070 SW 80th Ave, Ocala, FL 344812nd & 4th Thursday of the month at 2:00 PMLeader: Mikaela Saunderson 813-860-4282

PASCO - CENTRALAmentiy Center at Avalon Park West(Please Call for Appointment and Location)5060 River Glen Blvd, Wesley Chapel, FL 335451st Tuesday of the month at 12:00 PMCo-Leaders: Michele Bonneville 813-991-7524 Lynelle Bonneville Cathy Bickham 813-618-0578

PASCO - EASTBaldomero-Lopez State VeteransNursing Home6919 Parkway Blvd, Land O Lakes, FL 346391st Thursday of the month at 1:00 PMLeader: Kathleen Miller 727-236-7659

Beach House Assisted Living & Memory Care at Wiregrass Ranch30070 FL-56, Wesley Chapel, FL 335433rd Tuesday of the month at 1:00 PMLeader: Kathleen Miller 727-236-7659

Heritage Park37135 Coleman Ave, Dade City, FL 335254th Tuesday of the month at 4:00 PMCo-Leaders: Nila Premer 352-567-8615 Mary Beth LumbraKeystone Place at Terra Bella Retirement Community2200 Livingston Rd, Land O Lakes, FL 346394th Tuesday of the month at 1:00 PMLeader: Kathleen Miller 727-236-7659 PASCO - WESTBrookdale New Port Richey6400 Trouble Creek Rd, New Port Richey, FL 346533rd Tuesday of the month at 6:00 PMLeader: Sylvia Mencik 727-359-5430

People touched by Alzheimer’s disease and other related diseases come together in a confidential, safe environment to vent their frustrations, develop and share coping techniques, learn more about the disease and discover what resources are available to them. All support groups are facilitated by trained individuals.

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Thank You

Elder Assistance4109 Little Rd, Ste. 102, New Port Richey, FL 346554th Wednesday of the month at 9:00 AMLeader: Melanie Holmes 727-255-3592

First Baptist Church New Port Richey6800 Trouble Creek Road, New Port Richey, FL 346532nd Thursday of the month at 1:00 PMLeader: Lois Petermann 727-849-4210

Grand Villa Senior Living Community6120  Congress St, New Port Richey, FL 346524th Thursday of the month at 2:00 PMCo-Leaders: Sylvia Mencik 727-359-5430 Dina Giannet 727-204-0083 Regional Medical Center Bayonet Point14000 Fivay Rd, Hudson, FL 346671st Tuesday of the month at 10:00 AMCo-Leaders: Laura Arnold 727-863-0176 Louise Vallee 727-967-6376The Watermark at Trinity 1960 Blue Fox Way, Trinity, FL 346551st Tuesday of the month at 10:30 AM Leader: Carly Pelland 727-493-4536

PINELLASAtria Countryside3141 N. McMullen Booth Rd, Clearwater, FL 337612nd Monday of the month at 6:00 PMCo-Leaders: Angela McCormack 727-308-7190 Sheryl Hanson 727-773-6623

In Spirit Senior Living3260 N. McMullen Booth Rd, Clearwater, FL 337613rd Friday of the month at 2:00 PMLeader: Amy Pajak 727-726-5090

Market Street Memory Care Residence833 E Lake Rd N, Tarpon Springs, FL 346884th Thursday of the month at 2:30 PMCo-Leaders: Linda Pinke 727-202-9314 Sheryl Hanson 727-773-6623

SUMTERAmerican House Day-Break Club Support Group7676 Rio Grande Blvd, Wildwood, FL 347851st Tuesday of the month at 1:30 PMCo-Leaders: Cindy LaDow 574-721-0700 Larry Koenig 760-703-0913Brookdale Place at Freedom PointeRSVP to 352-674-3950 - Light Lunch is served1700 El Camino Real, The Villages, FL 321592nd Wednesday of the month at 12:00 PMLeader: Tonya Bolling 352-674-3950Cypress Care Center 490 S. Old Wire Rd, Wildwood, FL 34785Every Monday of the month at 9:30 AMCo-Leaders: Phyllis Petty 352-748-3191 Joyce Barney 706-897-3131

Elan Buena Vista All Dementias Stroke/Parkinson’s Related Demen-tias 5867 E County Rd 466, The Villages, FL 321623rd Tuesday of the month at 4:00 PMCo-Leaders: Jessica Smith 352-561-8450 Keary Jenkins Elan Spanish Springs (Free Respite Care During Meeting - Must Call To RSVP)930 Alvarez Ave, Lady Lake, FL 321594th Thursday of the month at 3:00 PMCo-Leaders: Paige Booth 352-300-1089

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Donations, contributions & memberships

CONTRIBUTORS/DONATIONSLinda and Fred DanielsJennifer Harris of the Red Hat ChapterIBM EmployeeLaura Arnold’s Support GroupConcierge CareContinuity of Care of Citrus CountyRaymond James / MarcusTarget EmployeeBeaudry FamilyNEW INDIVIDUAL MEMBERSHIPSEd SpinksPeg PickettMary Lou PepperMary SteadmanSharon DoncourtDr. Willis RENEWED INDIVIDUAL MEMBERSHIPSKatherine and Edward AlexanderBobbi MillerRon Frances, Edward JonesMartha HyattNEW CORPORATE MEMBERSHIPSArden Courts of TampaRight At Home BEQUESTSWilliam Demers of Beacon Woods Golf ClubIN MEMORY OF DONATIONSRoy Smith IMO Peggy SmithKathleen and James Pfender IMO Dale WittickMary Lee and Joseph Donoghue IMO Dale WittickJoseph Saskiewicz IMO Dale WittickMaryann and William Weir IMO Dale WittickWilliam Martin IMO Dale WittickJulie and James Christiansen IMO Dale Wittick

THE ALZHEIMER’S FAMILY SUPPORT WALK DONATIONSFauble FamilyBurns FamilyFuss FamilyDelta Gamma Banks/Page TheusSantoro Lifeskills Education FoundationThe Gardner’sCabral FamilyDouglas Family Kupriss FamilyMeyer FamilyBann FamilyKramer FamilyMiddleton FamilyThiemann FamilyPenrod FamilyGrizzard FamilyLee FamilyLifka FamilyTobin FamilyMaccarroll FamilyDoering FamilyStone FamilyMcNey Family and NeighborhoodFrench FamilyThe Village CheerleadersPro-Am Performing Arts CorpMiller FamilyWright FamilyCorddry FamilyShuey FamilyMeeseman FamilyGoodwin FamilyCarol Pomeroy IMO Sue RicciPat Surlak IMO Joe SurlakDiane Golab IMO Daniel Golab

Connie Marx and Lizbeth Marx IMO Bruce MarksPatrick and Kathleen Winters IMO Sue RicciMary Morrison IMO Mom HublerArthur and Ericka Deciutis IMO Edward Tom McAfeeErnie Oakley IMO Edward Tom McAfeeElsa Beale IMO Edward Tom McAfeeGeorge Frolic IMO Edward Tom McAfeeDolores Wilson IMO Edward Tom McAfeeCatherine Heatwole IMO Edward Tom McAfeeMichael Piepenburg IMO Edward Tom McAfeeCharles Heckel IMO Patsy HeckelEnid Cristodero IMO Doris TorokerShirley Cox-Guadagnolo IMO Patsy HeckelJack Sprauer IMO Patsy HeckelIMO Dorothy C FraserIMO Virginia MooreIMO Patsy HeckelJanet Souza IMO Douglas SouzaBonnie Thompson IHO David ThompsonJanet Argenziano IMO Maryann Ross Laurie Black IMO Carl ReedIMO David Howard from your Friends at The Carrabelle VillaLaura Grigull IMO Al GrigullRose Young IMO Dominick FerracoDennis and Diane Foley IMO Patsy HeckelCarol and Auggie Fietkau IMO Patsy HeckelDonna Miller IMO Patsy HeckelJoy Group IHO Our Loved Ones in the Joy GroupBeth and John Powanda IMO Sue RicciJoel Ricci IMO Sue RicciDeb and Greg Packard IMO Sue RicciAJ Deciutiis IMO Edward Tom McAfeeBrenda McAfee IMO Edward Tom McAfeeTerry Hudak IMO Edward Tom McAfee

Generous Donations & Memberships from December 18, 2019 to March 16, 2020

Mission Oaks10780 N US Hwy 301, Oxford, FL 344842nd Monday of the month at 2:00 PMLeader: Cheryl Fletcher 352-409-5360New Covenant United Methodist Church(Free Respite Care During Meeting - Must Call To RSVP Space is Limited)3470 Woodridge Drive, The Villages, FL 32162Every Thursday of the month at 10:00 AMCo-Leaders: Pat Kronk & George DunneContact Congregational Care Office: 352-750-4529

Sumter Place in the Villages(Free Respite Care During Meeting)1550 Killingsworth Way, The Villages, FL 321624th Tuesday of the month at 10:00 AMLeader: Julie Stepp 352-674-3713

The Willows at Wildwood(Free Respite Care During Meeting - Must Call To RSVP)4725 Bellwether Ln, Oxford, FL 344841st & 3rd Monday of the month at 3:00 PMPlease call for more information: 352-430-0076

Caregivers Time-OutCalling all caregivers!!!

2nd Thursday of every month from 10:00am-2:00pm

Activites & Crafts, Entertainment, Drive-In Movie Time, Café Time

Oxford Assembly of God12114 N US HWY 30, Oxford, FL 34484

Call the Church Office 352-748-6124 to Sign Up

Afo education 2020

Caregiver Learning DaysLearn helpful information about Alzheimer’s and dementia at our FREE Caregiver

Learning Events! These events last from 10:00 AM to 2:00 PM unless otherwise noted, and includes

free Breakfast and Lunch! To register, visit www.AlzheimersFamily.org/Caregiver or call the AFO office at 352-616-0170.

The Alzheimer’s Family Organization does not endorse the services of any informational speakers. Presentations are for educational purposes only.

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Hernando County June 19 - Atria Evergreen Woods - 7030 Evergreen Woods Trail, Spring Hill, FL 34608

Pinellas County September 10 - Palms of Largo - 300 Lake Ave. NE, Largo, FL 33771

Lake County May 8 - Cooper Memorial Library - 2525 Oakley Seaver Dr, Clermont, FL 34711

Citrus County June 12 - Citrus Memorial Hospital/Historic School Building - 502 W Highland Blvd, Inverness, FL 34452

Hillsborough County June 26 - Atria Lutz - 414 East Chapman Road, Lutz, FL 33549

W. Pasco County July 24 - Watermark at Trinity - 1960 Blue Fox Way, Trinity, FL 34655

Hernando County August 14 - The Residence at Timber Pines - 3140 Forest Rd, Spring Hill, FL 34606

Pinellas County August 7 - Sylvan Abbey Funeral Home - 2853 Sunset Point Rd, Clearwater, FL 33759

Hillsborough County August 28 - Hillsboro Memorial Gardens - 2323 W Brandon Blvd, Brandon, FL 33511

Pasco County October 2 - Keystone Place at Terra Bella - 2200 Livingstone Rd, Land O’ Lakes, FL 34639

Sumter County October 8 - Brookdale Place at Freedom Pointe - 1700 El Camino Real, The Villages, FL 32159

Caregiver’s corner

Beverly was diagnosed with Alzheimer’s in 2005. She was fully functional but had difficulty remembering things. There were signs several years prior, but I was in denial and she was able to keep others from thinking something was wrong with her memory. Doctors eliminated any physical problems such as tumors, and, after they completed testing her, gave us a number of things we could do to help us cope with the memory issue. We dealt with her condition quite well as the disease slowly progressed.

The routine we used for paying bills was Beverly would write the checks to pay the bill and mail them. I would balance the check book. This routine kept both of us informed and had worked well for years. As I balanced the check book, I found errors on the checks written and entries into the transaction register. I changed the routine so that I was with her as she wrote the checks and I would place them into the envelope to be mailed. I later corrected any errors on the check or entered on the transaction register. I had quickly learned I would upset her if I pointed out the errors.

As more and more problems related to her dementia occurred, I felt as if I was alone and had to solve them by myself. I searched out for help and selected the Alzheimer’s Family Organization Support Group to help me deal with the problems (challenges as I called them) because the program divided the caregivers (that’s me) from the loved one (that’s my wife). This gave the caregivers an opportunity to share how the week had gone and to ask for help in addressing their challenges. The loved ones gathered in another room and were cared for by some very special volunteers who guided the loved one in games and crafts. Various types of entertainers from the outside are used to entertain the loved ones and often engage them in their program. I also used other volunteer organizations such as Day Break to care for Beverly and give me time to do things without her. This plan worked well for a number of years.

We were told in the caregiver’s group that many of us wait to long to get help. A fact that got my attention was more caregivers pass away before the loved one (over 60%). The reason is that many caregivers think they can and must do it

Beverly Hartke and Alzheimer’sRalph Hartke

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We hope that the Caregiver’s Corner gives you the inspiration you need to contiune being the best Caregiver you can be. Through this tough diesase, you must always remember the good times you’ve had with your loved ones. If this corner inspires you to share your story with other caregivers, we enoucage you to submit your story to us. You never know if your story can help a fellow Caregiver push past that hurdle they are trying to overcome at this moment. Together we can all achieve greatness, and always remember you are not alone!

Submit your articles to: Editor@alzheimersfamily.org

License #232112; HHA #299993817

btuttle@seniorhelpers.com

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Chief Service OfficerCertified Fall Prevention/Balance Coach

Home Health Agency #299993817, 299993877

themselves 24 hours a day. I was one of those caregivers that waited too long. But thanks to taking part in the caregiver sessions, I got the help to handle the situation and I am doing much better. I still attend the caregivers meeting and now serve as a meeting facilitator for the other caregivers. Serving as a facilitator has rewarded me with a satisfaction of helping others and seeing them change from what seems as a hopeless situation into a “can do” attitude of caring for their loved one.

What is an End Of Life Doula/Midwife?

Death Doulas or End of Life Midwives are people who support a dying person and their family  in the end of life process much like a Midwife or Doula with the birthing process.  It is a fairly new non-medical profession that recognizes death as a natural, accepted, and honored part of life.

End Of Life Doula/MidwifeSaundra Piercy

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Guest article

What does an End of Life Doula/Midwife do?

He or she  assists in the dying process again much like a Midwife or Doula does with the birthing process.  Their goal is to help the dying person and the family cope with death through recognizing it is a natural and important part of life.

What kind of training is required to do this?

A Doula/End Of Life Midwife usually attends 27 hours Doula education and becomes certified after meeting the requirements of the source with which they were educated.

Our culture has such a horrifying view of dying.  We have let go of our attachment and handed it over to the medical community instead of being totally involved in the entire process and honoring the life that was lived.  It’s amazing how we do such planning and celebrating for a birth and totally run from the most important journey of our existence. 

The Doula will help you with all of this.  Finding a doula sooner rather than later is the best path.  Learn from the Doula instead of being overwhelmed and having no idea what to do first or who to contact and a million other things.  Doulas have most answers for you and if they don’t they will find out and save you the energy so that you are able to be totally present with your loved one and family.

Ideally a Doula can be very helpful at the time of a terminal diagnosis and remain through the death.  The Doula is honored to embrace the dying person and/or family at any time.

Both birth and death are an ushering into a “Life.”

I will be more than happy to talk to anyone that wants information about Doulas/End of Life Midwives. 

For nearly 25 years, Arden Courts has cared for individuals living with many different types of dementia.

Alzheimer’s

32%*

Percent of residents experiencing:

Other dementias including Lewy Body,

Frontotemporal, Parkinson’s and Vascular

68%*

For nearly 25 years we’ve enriched the

lives of almost

residents*36,000

We care for all stages of dementia from early

onset to advanced

arden-courts.com

Arden Courts. Often imitated, never duplicated.

Arden Courts of Palm Harbor2895 Tampa RoadPalm Harbor, FL 34684727.771.1600

Arden Courts of Tampa14950 Casey RoadTampa, FL 33624813.963.6100

When it comes to memory care

EXPERIENCE MAKES A DIFFERENCE

Visit Arden Courts today to see why our experience makes a difference.

*Data is from Arden Courts 2017 national results.

© 2019 HCR Healthcare, LLCAssisted Living Facility License #9193 and 9709

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Are you prepared for hurricane and tropical storm season? Like many of us, probably not. We get so busy taking care of others that we forget or put this off until another day. This often leaves last minute planning, and this adds more stress!

Each county in our service area, as well as the State of Florida has an emergency preparedness guide, which is heavily encouraged to read. Here are just a few tips to consider as the season approaches.

Things you should know:

• Sandbag locations

• Shelter locations

• Make an emergency kit with water, enough for a week, non-perishable’s, first aid kit, medications, protein drinks, can opener, batteries, flashlights, candles, matches or fire stick, blankets, transistor radio (large rubber made bins hold these items nicely)

• Copies of important documents such as identification (such as a license), insurance cards, social security cards, medical information and so forth (keep in a plastic zip lock bag)

• Activities that may help pass time should you need to go to shelter, or are without electricity

Emergency PreparednessKathleen Winters, MS, LN - AFO Executive Director

be ready

• Fuel up your vehicle

• If you own a generator, make sure it is in proper working order

• If you are without electricity open your refrigerator a little as possible

• Have your gas grill propane tank full and have a spare

• If you don’t own a gas grill, be sure to have plenty of lighting fuel and charcoal briquettes on hand

State Assistance Information LineThe State Assistance Information Line (SAIL) is a toll-free hotline activated at the time of an emergency to provide an additional resource for those in Florida to receive accurate and up-to-date information regarding an emergency or disaster situation impacting the State of Florida. The SAIL hotline is:  1-800-342-3557.

Florida Disaster Special Needs RegistryThe  Florida Division of Emergency Management, in coordination with each local emergency management agency in the state, developed a registry to allow residents with special needs to register with their local emergency management agency to receive assistance during a disaster.

The statewide registry provides first responders with valuable information to prepare for disasters or other emergencies. The link attached will bring you to the Florida Disaster Special Needs Registry page where you click on the name of your county. Once you do that a list of information for registering will guide you on where and what you need to do to register. https://www.floridadisaster.org/snr/

Bobbie MillerSenior Advocate

www.thatspecialplace.net | Central West Florida

That Special Placefor Seniors,LLC

Disabled VeteranOwned and Operated

We provide Placement & Referral Services FREE Free Consultations

727-207-2333

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From your editor

What Is Senior Gems? Bill Tuttle, Chief Service Officer - Senior Helpers

The Senior Gems® created by Senior Helpers®, is based on the Gems™, techniques, strategies, and overall approach to care which was created and developed by Teepa Snow, Positive Approach, LLC. The program is designed to assess and provide care for seniors that have Alzheimer’s disease and other

forms of dementia. As the population ages the need for quality homecare will rise, and with it the need to be able to care for people with Alzheimer’s and dementia.

Senior Gems® helps identify the characteristics of a client’s particular case and determine what stage of Alzheimer’s your loved one has, and then it focuses on the abilities that your loved one still retains. What can they do? How often can they do it? From there, we can help coordinate the best plan of action needed for you, your loved one, and your family, and help you discover strategies to support your elderly loved one.

Having a program like Senior Gems® allows Senior Helpers to help families and there love ones with this disease.

Senior Gems® is all about preparation and execution. By preparing caregivers with what will be needed to care for their senior loved one, the Senior Gems® program ensures that seniors receive the exact care they need and that it is tailored to their given situation.

Below is the Senior Gems Chart...

ALZHEIMER’S?If someone you know is 55 to 80 years of age and has been diagnosed with Alzheimer’s disease, you both may qualify for a new research study.• no-cost study-related care• compensation may be available for time and travel for participant and study partner Call today for details!

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Welcome

Hello and Thank You For The Warm Welcome to the Family

I am Marina McLoone, the New Community Educator for Pasco, North Hillsborough and North Pinellas Counties and I am excited to be here making a difference with all of you. Originally from New York, I followed my parents to Pasco County 28 years ago and have been blessed since to have a village helping me raise the next generation of amazing caregivers. I am married with two adult college grads and get to spend days off laughing with my mom, my sister, both in-laws and the rest of our extended family and friends in the Tampa Bay area. In the past several years I have lost both of my Dad’s and partnered with The American Cancer Society, Gulfside and HPH Hospice with great support. Helping with my Aunts relocation upon her recent diagnosis of Alzheimers, we needed direction, education and resources to help our family once again and with the current partnerships in Pasco, I was able to find the help we needed and at No Cost! Thank you AFO!After earning my B.S. degree in Marketing/Sales Management from The Fashion Institute of Technology, I began my long commute from Long Island to NYC in the dark every day. You will quickly get to know me and understand that I enjoy being outdoors in the sunshine listening to music or wind chimes, so relocating to Florida to be with Family was an easy decision for this beach loving, boat floating, fun spirited energetic girl! Having worked in Retail, Pasco County Schools, Direct Selling, Higher Education for the School of Nursing and clocking countless volunteer hours in our communities, one thing remains constant…I am a passionate people person ready to lend a hand and work towards “Unity in the Community”. Don’t just wonder-Ask-Ask-Ask then be thankful to have learned something new about someone or something.As I reflect over the past week that I have been with Alzheimers Family Organization, I am thankful to have met Teresa Haver, our Community Liaison during a networking meeting in early Fall of 2019. We kept meeting each other out in the community and it was then when we started building a trusting relationship which has turned into an opportunity to reunite the communities we serve with education and resources that we offer here at the AFO. I have been able to connect with a few of our board members, a few support group leaders, several caregivers to hear their stories and most rewarding so far has been being a part of The Villages Walk on March 7, 2020 and see just how many lives have been changed by this disease yet feel the support that is thereor

Marina McLoone - AFO Community Educator

everyone going through this too.I look forward to being part of your family and am grateful for this opportunity to serve you knowing we are Stronger Together! Let’s connect soon, Marina McLooneCommunity Educators are in your area to educate and bring awareness. If you have a group, club or meeting that you would like to have an AFO Educator speak at, reach out to us to schedule a date! Marina McLoone | 727-255-9766 | PascoCE@alzheimersfamily.org

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Thank you for supporting the Alzheimer's Family Organization.

Ron Francis III Financial Advisor

2619 E Gulf To Lake Hwy #A2 Inverness, FL 34453-3216 352-341-0579

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Featured article

End of Life Planning and Coping with Grieving

The human life span development reflects unique aspects of the various stages that broadly includes childhood (prenatal, infancy, adolescence), adulthood (early, middle, late) and death/dying. As we all know, death is a natural part of our human life span but most of us avoid discussing our mortality and the final journey we all must inevitably take. Learning more about this challenging subject, however, can actually empower us and reduce the uncertainty and fear we may feel. Although becoming a master of one’s own aging process does not guarantee a longer or improved lifespan, it promotes and enhances our ability to accept, change or modify our thoughts and beliefs, moods and attitudes, perspectives and pre-conceptions. When a loved one is dying, conversations about the end of life can be uncomfortable and difficult, yet discussing end-of-life care is important. It is best to prepare and educate ourselves on the end-of-life process, on how to plan a meaningful funeral or memorial service, and on how to effectively cope with the inevitable grief and loss following the death of a loved one.Depending on the circumstances, you might be able to help your loved one make important end-of-life decisions –such as whether to remain at home, move to a nursing home or supported facility, or to seek hospice care. Also, you can work with your loved one’s health care team to make sure they remain comfortable, and where pain, anxiety and other end-of-life symptoms may be treated. Even at the end of life, you can continue to support and nurture your relationship with your loved one. Simply being there can be an important source of strength and comfort for everyone, and helps address the emotional, spiritual, and practical aspects of end-of-life planning in a way that helps you prepare better.Elisabeth Kübler-Ross was a pioneer in holistic treatment options for the terminally ill and dying and she developed five stages of grief that included denial, anger, bargaining, depression, and acceptance. This was a way of explaining the emotions that people who knew they were dying would go through. The aim was to simplify and explain the main emotions, feelings and fear that the dying experience. Many of those seemed to be exactly the emotions that the grieving

James Finnegan, MSW, LCSW, SPHR, SHRM-SCP

experience after the death of a loved one, and indeed after any major loss in life such as a relationship, a loved animal, or even a job. It is important to know that not everyone goes through a prescribed process or journey of progression from one stage to the next through grief. Instead, people may experience some or all of the stages at different times –and not necessarily in any particular order. Many people think of grief as a single instance or short time of pain or sadness in response to a loss –like the tears shed at a loved one’s funeral. But grieving includes the entire emotional process of coping with a loss, and it can last a long time. Normal grieving allows us to let a

loved one go and keep on living in a healthy way.Grieving involves many different emotions, actions, and expressions, all of which help the person come to terms with the loss of a loved one. But keep in mind, grief doesn’t look the same for everyone, and every loss is different. Grieving is painful, and it’s important that those who have suffered a loss be allowed to express their grief personally. It’s also important that they be supported throughout the process. The length and intensity of the emotions people

go through varies, and although described as phases or stages, it may feel more like a roller coaster with ups and downs that make it hard for the bereaved person to feel any progress in dealing with the loss. A person may feel better for a while, only to become sad again. Sometimes, people wonder how long the grieving process will last, and when they can expect some relief. There’s no single answer to this question, but some grief symptoms may present themselves physically, socially, or spiritually that affect the intensity and length of grieving. They may come in waves of distress, where the person may seem disorganized, may have trouble remembering, thinking, and doing day-to-day activities. This can last for weeks to months and may include: Crying, Headaches, Difficulty Sleeping, Questioning the Purpose of Life, Questioning Your Spiritual Beliefs (e.g., your belief in God), Feelings of Detachment, Isolation from Friends and Family, Abnormal Behavior, Worry, Anxiety, Frustration, Guilt, Fatigue, Anger, Loss of Appetite, Aches and Pains, Stress, Socially withdrawing, Trouble thinking and concentrating, Dreams of the deceased (or even have

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hallucinations or “visions” in which they briefly hear or see the deceased), Weight loss, Becomes preoccupied with death or events surrounding death, Searches for reasons for the loss (sometimes with results that make no sense to others), Dwells on mistakes (real or imagined) that they made with the deceased, Feels guilty for the loss, Feels all alone and distant from others, Expresses anger or envy at seeing others with their loved ones.By this time, people have begun to recognize what the loss means to them in daily life. They have felt the pain of grief and are moving towards acceptance and adjustment to daily life without their loved one. A grieving person may need emotional support and finding support can be the key to a person’s recovery and acceptance of the loss. One of the critical factors in healing from grief is the support of other people. Having support from your family, friends, or a community of others who have also experienced grief allows you to feel that someone else understands or “gets it.” Being able to share your story or your feelings is vital to the healing process. If you are religious, you may find a grief support group in your community or with the leader of your church or temple. They may be able to provide suggestions for rituals or prayer that can help. Due to their role in the community, they may have extensive experience with loss.There are many types of grief support groups for both general and specific types of loss. If this feels intimidating, remember that you can attend a grief support group and just listen. You are not required to speak unless you are comfortable, and you may draw comfort from being in a community of others who have some understanding of the depth of your grief. Sometimes, talking to a professional with experience in grief and counseling can help you work through some of the intense emotions you may be feeling. It’s normal to feel vulnerable during grief, and you might not always want to share your thoughts with the people in your regular daily life. A compassionate third party who has grief support experience may be helpful as you overcome obstacles to your healing. Family members, friends, support groups, community organizations, or mental health professionals (therapists or counselors) can all help. In addition to finding support or a grief support group, when you’re grieving it is both important and difficult to take care of yourself. Your loss may take away your energy, your appetite and your emotional reserves.Allow yourself to grieve: Often we push the grief away, or tamp it down by distracting ourselves with activities or tasks. Trying to avoid grief only leads to prolonging it –grief has to be allowed to surface. Unresolved grief, often referred to as

complicated grief, can lead to depression, anxiety, substance abuse and health problems.Express your feelings in a tangible way: This can be done in many ways, depending on your creativity or usual means of expression. You can write about your loss in a journal, or send a private note to the person you’ve lost. You can make a scrapbook, photo album or create an online memorial  celebrating that person’s life. You can also get involved in an organization or philanthropy that was meaningful to them, or make a donation in their name.Be physically healthy: Your mind and body are connected, and physical health helps with the emotional healing process. It’s natural to feel lethargic or low energy, but if you’re able to take a walk or a run, it will promote the process. Combat your fatigue with an appropriate amount of sleep, and choose foods that provide you not just with comfort but energy.Don’t judge yourself, or let others judge you: You are allowed to grieve for as long and as deeply as you need to. No one, including yourself, can tell you when to “move on” or “get over it.” It’s okay to be angry, to cry, not cry, or even laugh –you need

to allow for moments of joy in your grief, and feel no guilt for having a moment without pain. During the end-of-life process, it is not uncommon for people to get their affairs in order, if they haven’t already. This might involve highly practical matters, such as creating or finalizing a legal will, establishing an advance healthcare directive or “Do Not Resuscitate” order, Pre-planning a funeral or memorial service. There are many sensitive and compassionate

resources, guides, and tools available through book stores and on-line mediums for creating a practical guide to end-of-life matters, which empowers us to clarify and share our wishes and continue to live life to the fullest possible extent. Each of these strategies may help contribute towards the important job of being a caregiver in any small way that might make this extremely challenging job a little easier and more manageable. Take great pride in your incredible efforts, as being a caregiver is not easy and those who do it are very special.More information regarding these and other support strategies for caregivers is available from one of the many dedicated staff from a caregiver support agency such as Alzheimer’s Family Organization.

Contributing Resources: National Institute on Aging, American Cancer Society, NurseLabs –Hospice Care, AARP, WebMD, Mayo Clinic, EKR Foundation, Psychology Today, MentalHealth.net

to once again educate the local Firefighters of The Villages. They have grown so much that I did 12 sessions with approximately 120 in attendance. I am always amazed at how positively they respond and share their own stories of someone they love who has been on this journey of a caregiver. I am so proud of them and for all that they do to serve our community. Thank you so much for your service.I have had several speaking opportunities this past quarter to help others learn more about the journey of Alzheimer’s. We know that it starts with being educated about this disease and how do we move forward in helping ourselves, the Caregiver and our loved one. If you have a need to have someone speak at your club, organization or group and learn more about Alzheimer’s Family Organization an Alzheimer’s/Dementia, please contact me as it would be a privilege to serve you.

A Servant’s Heart, Jackie

Winter has come and gone … we hope, and Spring is in the air! It has been non-stop since the first of the year. I now believe that the older you get, the faster the time goes by. So much to share so let’s get started. Our health fairs are underway. Health fairs are such an important part of what we do. Health fairs are a great exposure for us in our communities. It is a great outreach for the caregivers who attend. Many share their stories of their journey or what they are currently going through. We interact with other services so that we can then help our Caregivers continue their journey.We had our second Caregiver Learning Day in Marion County. We want to continue to grow that outreach to those needing assistance during this time of needing support. We had a great response and great attendance of vendors to offer their services.Once again, our Family Support Walk was a great success. AFO was able to be on the square of all Town Squares in The Villages to share the Walk info and to let the community know of our existence. We had 785 walkers in attendance, the donated baskets were a

big hit, and many responded to try and win the basket of choice. We are anxious to finalize the dollar figures of this great fundraiser. We were unable to have our “Caregiver Learning Day” on March 18th and our “Bling Fling” on March 20 due to the concerns with COVID-19. We knew for the safety of

all concerned, it was best to reschedule. So, we will let you know what is happening as things begin to settle down and get back to some type of normal routine. Please be safe and follow all

precaution guidelines given to us all.A Big “thank you” to the Willows for their fundraisers that the residents did for AFO. I love it when the residents give of their love, time and talents to benefit those on this journey. One of my highlights this quarter was the opportunity

The Villages & Marion CountyJackie Kuhn-Damron - AFO Community Educator

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Community Educators are in your area to educate and bring awareness. If you have a group, club or meeting that you would like to have an AFO Educator speak at, reach out to us to schedule a date! Jackie Kuhn-Damron | 574-721-1177 | Jakuhn@alzheimersfamily.org

Community educators report

afo fundraisers & events

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th May 30 2020th May 30 2020

Will be held virtually...

Visit us on Facebook &

website for updates!

Will be held virtually...

Visit us on Facebook &

website for updates!

www.AlzheimersFamily.org/Bowling

th July 18 2020th July 18 202011:00 AM11:00 AMStrike City

3544 Mariner Blvd

Spring Hill, FL 34609

Strike City3544 Mariner Blvd

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The AFO makes a difference in the lives of many caregivers. We have developed a GoFundMe for raising funds to benefit Alzheimer’s Family Organization (AFO),

any donation will help make an impact.

Help us keep our services free to the counties we serve!

Visit www.gf.me/u/w2qn88 to donate!

HELP THE AFO CONTINUE FREE SERVICES!

YOU CAN DONATE ANYTIME...DONATE WHILE SITTING ON THE COUCH, AT 11:00 PM, OR EVEN WHILE WAITING FOR YOUR DINNER RESERVATION!!!

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Community educators report

Lake & Sumter County Jamilya Rahming - AFO Community Educator

Spring is finally here and the first quarter of the year is wrapping up. It is hard to believe that I have been serving as your Community Educator for a few months now, and what a pleasure it has been! Since that last quarter, I’ve learned so much and have been pretty busy. The beginning of this year kicked off health fair season, along with planning

major fundraisers for the AFO, such as our Annual Alzheimer’s Family Support Walk. AFO has been blessed to be a vendor at many health fairs within Lake County that gives us the opportunity to raise awareness and to share our resources with the

Community Educators are in your area to educate and bring awareness. If you have a group, club or meeting that you would like to have an AFO Educator speak at, reach out to us to schedule a date! Jamilya Rahming | 352-396-2614LakeCE@alzheimersfamily.org

community. Many thanks to the hosts for inviting and supporting the AFO! Between January and March, I’ve attended 10+ health fairs in the Leesburg and Clermont area. Each health fair consists of different vendors that were all great resources! Professionals from insurance companies, local hospitals, home health services were represented. Even though the season is coming to an end, I highly recommend attending one if it is near you! You’ll gain valuable information, and even if you don’t need the services at this present time, you never know when it could come in handy! One aspect of being a Community Educator that I love is being able to speak to different groups about Alzheimer’s Disease. In January, I had the privilege of speaking to a group at the Franklin House in Eustis on what is Alzheimer’s Disease and it’s warning signs. The residents had many questions

because they desired to interact better with their neighbors and friends who have the disease or some sort of dementia. It’s better to know than to not know at all! We had a wonderful discussion, and Jackie, the Villages & Marion County Community Educator, was there also to assist. If you would like for me to speak at your housing community, church, or event, please let me know! I encounter people every day that are just curious about the disease and I love being a resource. Speaking of resources, our first Lake Caregiver Learning Day of 2020 is happening in May! It will be held at Cooper Memorial Library in Clermont on May 8th. The event will last from 10am - 2pm. We will be having Dr. Isaac Deas speaking on why self care is important for caregivers, and Dr. Kristen Weinbaum will be speaking on hearing loss and cognitive decline. There will also be a panel of professionals that will answer any questions that you may have about your loved one and the disease. Please be sure to RSVP by calling our office at 352-616-0170 or on our website www. Alzheimersfamily.org/Caregiver I look forward to this upcoming quarter and meeting more of you all. Thank you for all that you do to support AFO! - Jamilya

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Kristina Grasso Jamilya Rahming - AFO Community Educator

Volunteer Spotlight

Kristina Grasso is a local Community Liaison in the Lake County community. She has been with Cornerstone Hospice for about two years. A Long Island native, Kristina moved to Clermont in the third grade and has continued to build her life in Central Florida. She attended the University of Central Florida and received her Bachelor’s degree in Human Communications with a minor in Mass Communication. Her greatest desire is to work with nonprofit organizations, especially in outreach initiatives. With her passion for the South Lake community she uses her position to educate individuals on hospice services and programs through creating unique community events for a variety of audiences. Kristina has built many partnerships and thoroughly enjoys connecting individuals to other resources in the community, so volunteering with AFO became a perfect fit after she met Pam Schmitz two years ago. Kristina currently co-leads a support group in the Clermont community and has served on the planning committee for the South Lake Caregiver Learning Day.Clermont Arts & Recreation Center 3700 S Hwy 27, Clermont, FL 34711 - Room 71st & 3rd Tuesday of the month at 4:00 PM Co-Leaders: Kristina Grasso 352-901-0380 Courtney Schmidt 352-901-3116

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Caregivers Should RememberThese 10 Absolutes

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Never ARGUEInstead AGREE

Never REASONInstead DIVERT

Never SHAMEInstead DISTRACT

Never say YOU CAN’TInstead DO WHAT YOU Can

Never COMMAND or DEMANDInstead ASK or MODEL

Never CONDESCENDInstead ENCOURAGE & PRAISE

Never say REMEMBERInstead REMINISCE

Never say I TOLD YOUInstead REPEAT

Never LECTUREInstead REASSURE

Never FORCEInstead REINFORCE

Alzheimer’s Disease Research

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Research corner

930 Alverez Ave. • The Villages, FL 32159www.ElanSpanishSprings.com

Assisted Living Facility ID # 12833

352-300-1089

Organizations large and small are diligently researching to find a cure for Alzheimer’s. As we know all too well, it is a devastating disease. According to the Alzheimer’s Association, 5.8 million Americans are living with Alzheimer’s, and by 2050, this number is anticipated to rise to nearly 14 million. Every 65 seconds, someone in the United States develops Alzheimer’s. Research occurs on a global basis in large pharmaceutical companies, universities, small biotech organizations, physician practices, dedicated research sites, etc. We are all working to find better ways to diagnose Alzheimer’s, to halt or reverse the disease progression, and ideally to prevent its occurrence. Sadly, several drugs that showed major promise have been dropped over the last few years due to the lack of statistically significant results. However, in November of last year, we finally had some great news in the world of Alzheimer’s Research. On November 2, 2019, Shanghai Green Valley Pharmaceuticals announced the approval of Oligomannate, the first drug to be approved for the treatment of Alzheimer’s in 17 years! China’s  National Medical Products Administration (NMPA) approved Oligomannate. Clinical trial results demonstrated that Oligomannate statistically improved cognitive function in mild-to-moderate Alzheimer’s patients within as early as 4 weeks after starting the medication, and the benefit was sustained at each follow-up assessment visit

Jennifer Selk, MBA, CCRP – Co-owner, Suncoast Clinical Research

(Source: Shanghai Green Valley Pharmaceuticals press release, dated November 2, 2019). Clinical trials will be starting in the Spring of 2020 in the United States, Europe, and other Asian countries, as Shanghai Green Valley Pharmaceuticals pursues global approval for Oligomannate. Suncoast Clinical Research is proud to announce that we will be one of the select sites conducting this trial, in New Port Richey. The Principal Investigator for this trial is Vikram Atit, MD, board certified neurologist. Suncoast is also working with T3D Therapeutics on a first-in-class, new drug candidate, with the potential to improve memory and cognition in individuals with Alzheimer’s disease. This trial is currently seeking patients. In addition, we have an ongoing clinical trial (for which enrollment has closed) with Lilly, a global leader in the fight against Alzheimer’s disease for nearly 30 years. Lilly has molecules and diagnostics in various stages of clinical development, including seven investigational compounds to treat Alzheimer’s and two diagnostics to help better diagnose it. If you or someone you know is interested in participating in a research trial for mild cognitive impairment or Alzheimer’s, please contact us for more information. Each research protocol has unique criteria for participation. These criteria are designed for patient safety and to properly measure the efficacy of the drug under study. Most trials involving Alzheimer’s include some imaging of the brain. Participants are reimbursed for their time and travel, and insurance is not required. All patient data is documented in an anonymous fashion and maintained in complete confidentiality.Caregivers are important to research participation. Typically, caregivers are required to participate in the clinical trial with their loved one who suffers from Alzheimer’s. Caregivers can be friends or family members and are important for relaying information, helping the participant make informed decisions, and ensuring the participant complies with the trial requirements and visit schedule. We consider research participants to be Medical Heroes, as they are essential to finding a cure. The term Medical Hero was coined by the Center for Information and Study on Clinical Research Participation (CISCRP), to celebrate the people who give the gift of participation in clinical research. CISCRP is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. For more information about CISCRP, visit their website at: www.ciscrp.org.

Suncoast Clinical Research5604 Gulf Dr., New Port Richey, FL 346523890 Tampa Rd., Suite 301, Palm Harbor, FL 34684Phone: (727) 849-4131Fax: (727) 844-0577info@suncoastclinicalresearch.comwww.suncoastclinicalresearch.comVisit us and Like us on Facebook

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Community Liaison Connections

Community HappeningsTeresa Haver, AFO Community Liaison

“Never let the fear of striking out keep you from playing the game” - Babe Ruth

Spring has sprung kicking it off with one of Americas favorite sports Baseball! It is time to get out and enjoy the fresh air while taking in a game, kayaking, hiking or relaxing at one of our many amazing beaches; take time to enjoy the memories made with family and friends. I was a part of the United Way 9th Annual Dementia Care Seminar held at St. Francis Cabrini Church. The event featured Gary Joseph Leblanc the Director of Education for Dementia Spotlight Foundation and author. Susan Woolfe also presented on “What you need to know about long term care” sharing her 32 years of experience and education in the insurance business. I also participated as a vendor at the Forest Lakes Estates Health Fair. I was a part of the Alzheimer’s Family Support Walk in The Villages as well. I have trained new Support Group Leaders allowing for new groups to start enabling the AFO to build partnerships to better serve our communities. We are excited to have our first group in Marion County at Brookdale Senior Living Clare Bridge. We also have new group in Hillsborough County starting at Atria in Lutz. The AFO and the East Hernando Library have joined forces in creating a monthly Memory Café. It is held on the fourth Tuesday each month at the East Hernando Library located at 6457 Windmere Road, Brooksville from 11 a.m. until 1 p.m. January’s and February’s café were a huge success featuring Rubber Ducky Month and Madi Gras. Caregiver’s and their loved ones enjoyed duck races, singing, bingo, parades, corn hole and more. We also celebrate birthday month with a cake donated from Winn Dixie. Each month features a new theme with different activities. Please feel free to call our office (352) 616-0170 or the EH Library (352) 754-4043 for more informationI enjoy the opportunity to network and build partnerships through the variety of monthly meetings and appreciate being part of PAN (Pasco Aging Network), FALA of Citrus/

Hernando (Florida Assisted Living Association), CRC (Community Resource Council), 4C’s (Citrus Continuity of Care), MM (Marketing Mania), Community Service Council of West Pasco (CSC), etc. I would like to say a big “Thank You”, for all the chartable work from numerous organizations the members do throughout the year for our communities. We appreciate all of you. I would also like to announce the Hernando County Continuity of Care Council or better known as H4C. I am honored to be a board member. The mission statement reflects as follows- “A community organization designed to bring together senior healthcare and related professionals in Hernando County through education and relationship marketing.” The meetings are on the 3rd Wednesday of every month at 10 a.m. in different locations throughout the county. Please feel free to contact us by emailing Hernando4C@gmail.com and also check us out on Facebook (search H4C). I would like to close with saying “Thank you” to the many organizations listed above and those that have met with myself over the past several months to discuss how we can work together to provide our caregivers with education, support and services in our communities; Right at Home, Palms of Largo, East Hernando Library, Citrus Memorial Behavioral Health, Atria Lutz, Atria Evergreen Woods, Global Alzheimer’s Platform Foundation, and Sylvan Abbey.If you would like to make a connection or have suggestions, please feel free to reach out to our office and I will gladly make a connection. Let’s make 2020 a year to achieve.

A special thank you to Veterans Memorial Park Honor Guard for presentation of the colors and to Jamilya Rahming for her beautiful performance of our National Anthem. We would be remiss if we did not give a huge thank you to Tyler Borowski, The Walk Chairperson who made this event a great success with his Walk Committee; Gerard Desilets, Mindy Chaimowitz, Bonnie Reidy, Charlie Heckel, Linda Paulsen,

Julie Klas, Sharon Doncourt, Peg Picket, Jackie Larson, Tonya Bolling and certainly the AFO staff; Jackie Kuhn-Damron, Jamilya Rahming, Teresa Haver, Alicia Vegerano, Marina McLoone and all the volunteers who helped make this day great!

I would also like to thank Tori, Cindy, Ray & Alex from The Villages Polo Club for their support and assistance. We look forward to doing this again on March 13th, 2021!

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Event re-cap

The Villages Alzheimer’s Family Support Walk

The Alzheimer’s Family Support Walk was a great success! The event was held on a very windy, chilly but sunny day, March 7th at The Villages Polo Field. Our gracious and generous co-name sponsor was PARADY Financial/PARADY Cares Foundation for the seventh time in the eight years we have held this event. We cherish this partnership with Cindy Reed, Linda

Bennett and all the Parady family. Thank you for your devotion to the Alzheimer’s Family Organization. We will be forever grateful! There were several other returning sponsors joining us again this year bringing sponsorships at $25,000.

Diamond Sponsor: Élan Spanish Springs/Buena Vista. Gold Sponsors: Your Life at Wildwood, Cornerstone Hospice, Village Veranda and Lake Medical Imaging. Silver Sponsors: Visiting Angels, The Villages Health Systems, Day Break Club of The Villages, UF Health, Kindred at Home/Senior Bridge, Hunt Law Firm, Hillcrest Memorial Gardens, Sumter Senior Living, Synexus and Comfort Keepers.Bronze Sponsors: Coping with Dementia, Mission Oaks, Pioneer Care and Cypress Care Center.In-Kind Sponsors: Metro Diner, Century Florist, The Day Break Club of The Villages, Linda Paulson-Mary Kay, Stretch Zone, The Villages Walk Committee, Woof Gang Bakery, Winn Dixie, Cabot, BJ’s Warehouse, Tees & Greens, Light House Seafood, Debbie Verdon- Yoga, Ricciardi’s, The Villages Delta-Gamma Alumnae, Banks-Page Theus Funeral and Cremations, Dayna Straehley, CERT, The Villages Fire Dept., and Nancy Blass. The Walk brought out 785 walkers this year even though the day was chilly and very windy. We would like to acknowledge the team Bob’s Bunch who actually secured third place for the largest team with 46 walkers. We thank each of you for your support and commitment to this event. Everyone had

a very nice time, loved the toasted bagels, cheese and other food items. A big shout out to George “Rock” Russell for being our Master of Ceremony and to Take Two band for the entertainment. The Day Break Club, led by Gerard Desilets and Julie Klas did an outstanding job of collecting

items, putting baskets together and for organizing the entire basket donations process from start to finish. The volunteers you brought for the day of the event and behind the scenes made such a huge difference! Thank you so very much!!!

THANK YOU SPONSORS!CO-NAME

DIAMOND............................................................................................................................................................................................

SILVER SPONSORVisiting Angels • The Villages Health Systems • Day Break Club of The Villages • UF Health • Kindred at Home/Senior Bridge • Hunt Law Firm • Hillcrest Memorial Gardens • Sumter Senior

Living • Synexus • Comfort Keepers

GOLD SPONSOR

SILVER SPONSORCoping with Dementia • Mission Oaks • Pioneer Care •

Cypress Care Center

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CORPORATE MEMBER SPOTLIGHT

Help support the AFO, by becoming a Member today!

The safety and well-being of our guests, caregivers and their loved ones, community partners and staff is very important to us. As we monitor the continuously changing Coronavirus (COVID-19) status and implement steps to limit everyone from unnecessary exposure, we have decided to postpone all events, activities and meetings with the public until further notice. We apologize for this inconvenience and look forward to rescheduling the events in the future.

If you have any questions, please contact our office number, 352-616-0170 as this number rolls over to our AFO mobile phone which we continue to answer during normal business hours. We are answering emails and working as we typically do. Please check our website and Facebook page for updates as they become available. We are working remotely from our

homes and doing our best to limit contact with others as requested by the CDC and government officials.

If you think you have been exposed to COVID19 and develop a fever and symptoms, such as cough or difficulty breathing, call your healthcare provider for medical advice. Our best wishes for each of you to stay safe as our communities throughout our service area and the entire United States battle this together.

Stay healthy

JUST A FEW OF THE SERVICES THE AFO OFFERS:

Respite Care FinancialReimbursement Program This program provides financial assistance reim-

bursement to qualified members for respite of their loved ones. The caregiver arranges for their own respite care needs using either in-home services provided through a home health agency, neighbor, friend, or institutionally-based, short-term respite such as adult day care, ALF, or nursing home care. Applications and documentation are required for reimbursement of funds.

Wanderer’s Reunification Program The objective or goal of the Wanderer’s Reunification

Program is to identify and reunite a loved one with Alzheimer’s disease or other form of dementia with their caregiver as quickly and as safely as possible, thus reducing the time of separation and trauma to the loved one. There are two options offered under this program;

1.) An Identification Bracelet or Pendant 2.) A Human Scent Kit Contact our office for more information.Support Groups AFO support groups are for family members,

caregivers, and others interested in learning more about Alzheimer’s disease and coping skills. The meetings are free and everyone is welcome. For more information and to verify meeting dates and times, please contact our office.

Resource Lists Our resource guide office a variety of services by

county, that support caregivers with the many issues that may arise while caring for their loved one. Services such as, but not limited to; Elder Law, Assisted Living Facilities, and Home Health Agencies.

Support Group Leader Training The AFO is always looking to provide support group

leader training to those volunteers looking to lead a group. To become a support group leader, please contact the office and we will arrange for training. Once trained, a leader will be able to facilitate a sup-port group, through the support of the AFO, which is a wonderful resource for caregiver’s as they walk the journey of Alzheimer’s disease or other related dementias.

Alzheimer’s Disease and Related Dementias (ADRD) Curriculum & Training Training is provided for caregivers and professional

care providers to those suffering from Alzheimer’s disease and related dementias. ALF, Nursing Home, and Home Health Agency Dementia Specific Train-ings are available to professionals and approved by Florida Department of Elder Affairs and USF.

Caregiver Learning (Training Sessions) Caregiver Learning events provide caregiver’s with

important community resources as well as guidance and training on how to cope with the challenges of caregiving. Each event is catered to the needs of the community in which the learning event will take place, hence over the calendar year, providing a variety of topics and resources to support caregiver’s and their loved ones dealing with the day to day challenges of walking this journey.

Alzheimer’s Resources andRelated Books Helpful books in our library are available for viewing

at the AFO office or may be loaned out.

Speaking Engagements Alzheimer’s Family Organization members are

available to speak to community groups, clubs, and organizations about Alzheimer’s disease.

Memory Screenings Memory screenings are simple and safe “healthy

brain check-ups” consisting of a series of questions. This screening can provide a baseline for a person regardless of whether or not there is a concern of memory loss. This screening can also aid in a referral should a person have a concern about memory loss. A screening is not a diagnosis…but can provide guidance on the need for further investigation of a concern.

Pardon My Companion Card These cards enable caregivers to provide informa-

tion about Alzheimer’s disease and an explanation concerning any unusual behavior by the Alzheimer’s patient while in public.

Do Not Resuscitate Order Forms A properly executed DNRO stating the patient is

terminal must be signed by the patient’s physician. Emergency Medical Services are directed to honor a DNRO and provide the patient with comfort care only. The form must be with the patient and is avail-able at the AFO office

NoN-Profit orgaNizatioN

U.S. PoStage

P A I DtamPa, fL

Permit #6328

HAVE YOU MOVED???If your address has changed,

please let us know!

461 Mariner BoulevardSpring Hill, FL 34609352-616-0170Info@alzheimersfamily.orgwww.alzheimersfamily.org

We help families and loved ones with all different types of dementia, we help with more than just Alzheimer’s!