Winter 2021 Vol. 24 No.1 Fall 2020 Vol. 23 No. 3
Changes in Care Before and During COVID-19 COVID-19 vs. Influenza The Latest in Alzheimer's Research 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: Support Groups - Pages 4 & 5 Page 7 Page 9
Caregiver's Corner Guest Article Changes in Our Loved One’s Care Before and During COVID Time for Your Flu Vaccine
Page 10 Page 17
Research Corner From Your Editor The Latest in Research Parkinson’s
Executive Director Administrative Manager Contact Information Kathleen Winters Alicia Vegerano Alzheimer’s Family Organization Board President Community Educators PO BOX 15489 Lori Wilson Brooksville FL 34604 The Villages & Marion County Board Vice President Jackie Kuhn-Damron Bill Tuttle Telephone: 352-616-0170 574-721-1177 Email: [email protected] Board Treasurer [email protected] Tyler Borowski Lake County & S. Sumter www.alzheimersfamily.org Board Secretary Jamilya Rahming Alexander Powell Vision Statement 352-396-2614 All those with Alzheimer’s or other forms of Board Members dementia, and their caregivers, will have a Sharon Doncourt [email protected] better quality of life. Ron Francis III Peg Pickett Ed Spinks Dr. Mary Stedman /AFO.FL The “Caregiver’s Companion” is published quarterly by The Alzheimer’s Family Organization. The Alzheimer’s Editor Family Organization disclaims any liability for damages resulting from articles, opinions, advertising, or Bill Tuttle AlzFamilyOrg representations expressed or implied in this publication. Design Any comments or claims are made solely by the individual author and do not necessarily represent the Jamilya Rahming views of any other Alzheimer’s Family Organization Contributing Authors Alzheimer’s Family Organization member or other persons, living or dead. Vicky Martinez All materials in this newsletter is offered as information to our readers. The Alzheimer’s Family Organization does James Finnigan not warrant, endorse, or recommend any provider, Ann Gayle program, or product.
Jeff Pohlig The Alzheimer’s Family Organization conforms to the Florida “solicitations of Contributions Act” pertaining to charitable Dr. Lauren Dedea 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.” Winter 2021 Vol. 24 No. 1 Image Credits: Jackie Kuhn-Damron, Suzy Hazelwood, Geralt, Pexels, Pixabay
2 Alzheimer's Family Organization - Caregiver's Companion WORDS FROM THE EXECUTIVE DIRECTOR
Happy New Year!
Wow! It is 2021...it is hard to believe! I can’t say that I am sad to see 2020 be in the past. This year was a very trying time for all of us. All united under the same cloud of isolation, challenges, hardships, and fears. It is amazing that a virus that is so small it cannot be seen with the naked eye can bring an entire world to a halt. I am entering 2021 with hope and a vision for a better year for all.
The AFO suffered tremendous financial hardship in 2020, but through the support of caregivers and the community at large, we are still here supplying services. The AFO was blessed to be covered in eleven newspaper articles and one television interview of our hardship and the community came through to support us. We look a bit different than we did, down to just four staff, our office closed, working out of our homes, providing support groups and educational events virtually, but we are here none the less! We are still offering our programs except for the Respite Care Financial Reimbursement Program as funds are not available currently. We will re-visit for 2022.
The staff and I are slowly being able to be out more in the community, wearing our masks and supporting caregivers through home visits, meeting at outdoor space, or whatever is most comfortable for all parties involved. Our LEADER Task Force made strides in 2020 with meetings commencing via Zoom platform. Of the eight-county service area seven Sheriff’s Offices and one Police Dept. Were regulars at the meetings. A quick card was developed for deputies and officers, social workers and victim advocates. The Sheriff’s Summit plans are underway with the event being hopefully hosted in Hernando County this year and will be held on the first Friday in May as it has been in years past. The Task Force has recommended the Summit be rotated each year offering each county to host.
Many of our support groups have continued via Zoom or conference call, and some have begun to meet face to face wearing masks and keeping with social distancing guidelines. Everyone has had to make concessions and accommodations due to Covid-19, but everyone is doing the best they can. With that said, we have decided to continue or educational series virtually until we see how the year progresses. We have all eleven months planned and the speakers confirmed. You can see the list in this issue of the Caregivers Companion.
As this new year begins, all of us at the AFO wish you all the best, good health, safety and care. Please feel free to reach out to us at (352) 616-0170 or each of the Community Educators. Their contact information is: Jackie Kuhn-Damron at (574) 721-1177 or Jamilya Rahming at (352) 396-2614. The AFO stays committed to the needs of caregivers and the communities that we serve. We are only a phone call away. Peace to you.
Respectfully,
Kathleen M. Winters, Executive Director
Alzheimer's Family Organization - Caregiver's Companion 3 AFO SUPPORT GROUPS 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. Due to COVID-19, please call the support group leader for more information. Timber Pines Country Club CITRUS Lake Port Square (Gated Community – must register with Sue to attend) Cornerstone Baptist Church (Must Call To Make Appointment) Lodge - Oak Room 1100 W. Highland Blvd, Inverness, FL 34452 600 Lake Port Blvd, Leesburg, FL 34748 6872 Timber Pines Blvd, Spring Hill, FL 34606 3rd Wednesday of the month at 1:30 PM Every Wednesday of the month at 1:30 PM 2nd Thursday of the month at 10:00 AM Leader: Debbie Selsavage 352-422-3663 Leader: Allison Church 352-728-8525, x232 Leader: Sue Simone 203-725-6888 Crystal River Library Lakeview Terrace 8619 Crystal St, Crystal River, FL 34428 HILLSBOROUGH 331 Raintree Dr, Altoona, FL 32702 2nd Thursday of the month at 1:30 PM 2nd Tuesday of the month at 1:30 PM Arden Courts of Tampa Leader: Cheryl Fletcher 352-409-5360 Leader: Debbie Selsavage 352-422-3663 (Please Call To Make Appointment) Lake Ridge Village Senior Helpers 14950 Casey Rd, Tampa, FL 33624 353 W Ardice Ave, Eustis, FL 32726 587 E Gulf To Lake Hwy, Lecanto, FL 34461 Frontal Temporal Degeneration & Alzheimer’s 3rd Thursday of the month at 3:00 PM 1st Friday of the month at 1:30 PM 2nd Sunday of the month at 1:00 PM Leader: Carolyn Costello 804-615-1117 Call Office for more information - 352-835-7191 Co-Leaders: Mary Anne Upham 813-786-8388 North Lake Presbyterian Church Doris Hogan 813-486-0554 HERNANDO 975 Rolling Acres Rd, Lady Lake, FL 32159 The Colonnade at Northdale Atria Evergreen Woods 1st Wednesday of the month at 1:00 PM 3401 W Bearss Ave, Tampa, FL 33618 Pool Clubhouse Leader: Louise Shuey 352-753-8262 2nd Tuesday of each month at 10:30 AM 7030 Evergreen Woods Trl, Spring Hill 34608 3rd Wednesday of the month at 1:00 PM Leader: Wenona Spencer 813-961-1044 2nd Tuesday of the month at 1:00 PM Co-Leaders: Louise Shuey 352-753-8262 2nd Saturday of the month at 4:00 PM LAKE Don Dati 352-259-5363 Leader: Lori Wilson 352-596-2055 Bridgewater at Waterman Village North Lake Presbyterian Church Bayfront Health Brooksville (Free Respite Care During Meeting) Early Stage Group (for early stage patients) Medical Arts Bldg. – Ste.120 500 Waterman Ave, Mt. Dora, FL 32757 Fellowship Center Room 2 17222 Hospital Blvd, Brooksville, FL 34601 3rd Wednesday of the month at 1:30 PM 975 Rolling Acres Rd, Lady Lake, FL 32159 2nd & 4th Monday of the month at 1:00 PM Co-Leaders: Coleen Connolly 352-383-0051, x313 1st and 3rd Friday of the month at 10:00 AM Co-Leaders: Donna Alford 813-469-5024 Chaplain Robert Nickell 352-383-0051, x229 Leader: Louise Shuey 352-753-8262 Bill Tuttle 813-712-9058 Madison at Clermont Osprey Lodge Assisted Living & Memory Care Bible Baptist Church 650 E. Minnehaha Ave, Clermont, FL 34711 (Free Respite Care During Meeting) 15901 Little Ranch Rd, Spring Hill, FL 34610 1st Wednesday of the month at 4:00 PM 1761 Nightingale Ln, Tavares, FL 32778 2nd Tuesday of the month at 9:00 AM Co-Leaders: Paul Clews 352-241-0844 3rd Tuesday of the month Leader: Sandy Locke 727-856-6815 Ashley Alvarez Alzheimer’s Café: 11:30 AM - 12:30PM East Hernando Library Chapel of Christian Faith Support Group: 12:30 PM - 1:30 PM 6457 Windmere Rd., Brooksville, FL 34602 1401 Paradise Drive, Lady Lake, FL 32159 Leader: Ruth Cantillon 352-253-5100 2nd Tuesday of the month at 11:00 AM 3rd Thursday of the month at 10:00 AM Leader: Glorea Charland 352-754-4043 MARION Leader: Martha Hyatt 352-748-7633 Forest Oaks of Spring Hill Brookdale Canopy Oaks (Please RSVP) Clermont Arts & Recreation Center 8055 Forest Oaks Blvd, Spring Hill, FL 34606 9070 SW 80th Ave, Ocala, FL 34481 Virtual Group 1st Wednesday of the month at 11:00 AM 2nd & 4th Thursday of the month at 2:00 PM 1st Monday of the month at 4:00 PM Co-Leaders: Leigh Dingle 352-683-3323 Leader: Mikaela Saunderson 813-860-4282 Co-Leaders: Courtney Schmidt. Steven Robles Shabhan Blount 352-901-3116, 352-223-3709 AFO Office PASCO - CENTRAL Cooper Memorial Library Virtual Group Amentiy Center at Avalon Park West Room 221 (upstairs) 3rd Wednesday of each month at 1:30 PM (Please Call for Appointment and Location) 2525 Oakley Seaver Dr, Clermont, FL 34711 Leader: Alicia Vegerano 352-616-0170 5060 River Glen Blvd, Wesley Chapel, FL 33545 3rd Thursday of the month at 2:00 PM Northbrook Health & Rehabilitation 1st Tuesday of the month at 12:00 PM Leader: Kristy Cullen 407-557-0054 575 Lamar Ave, Brooksville, FL 34601 Co-Leaders: Michele Bonneville 813-991-7524 The Cove at Tavares Village 2nd Tuesday of each month at 2:00 PM Lynelle Bonneville 1501 Sunshine Pkwy, Tavares, FL 32778 Co-Leaders: Janet Torcello, Megan Souza, Megan Cathy Bickham 813-618-0578 3rd Monday of the month at 1:30 PM Mulock, Heidi Yerbury 352-799-2226 Leader: Amy Lesner 352-742-7111 PASCO - EAST The Residence at Timber Pines Crane’s View Lodge ALF & Memory 2nd Floor Chapel Baldomero-Lopez State Veterans Nursing Home Virtual Group 1601 Hooks St, Clermont, FL 34711 6919 Parkway Blvd, Land O Lakes, FL 34639 3rd Tuesday of the month at 2:00 PM 4th Tuesday of the month at 1:30 PM 1st Thursday of the month at 1:00 PM Leader: Kathleen Winters 352- 683-9009 Leader: Heather Carelli 352-901-0239 Leader: Kathleen Miller 727-236-7659 First Baptist Church of Leesburg / Beach House Assisted Living & Memory Care at South Campus Wiregrass Ranch 25900 US Hwy 27, Leesburg, FL 34748 30070 FL-56, Wesley Chapel, FL 33543 1st Monday of the month at 2:00 PM 3rd Tuesday of the month at 1:00 PM Co-Leaders: Jamilya Rahming 352-396-2614 Leader: Kathleen Miller 727-236-7659 Kristy Cullen 407-557-0054
4 Alzheimer's Family Organization - Caregiver's Companion Heritage Park PINELLAS Elan Buena Vista 37135 Coleman Ave, Dade City, FL 33525 All Dementias Stroke/Parkinson’s Related Atria Countryside Dementias 4th Tuesday of the month at 4:00 PM 3141 N. McMullen Booth Rd, Clearwater, FL 33761 5867 E County Rd 466, The Villages, FL 32162 Co-Leaders: Nila Premer. 352-567-8615 2nd Monday of the month at 6:00 PM 3rd Tuesday of the month at 4:00 PM Mary Beth Lumbra Co-Leaders: Angela McCormack 727-308-7190 Co-Leaders: Jessica Smith 352-561-8450 Keystone Place at Terra Bella Retirement Community Keary Jenkins Sheryl Hanson 727-773-6623 2200 Livingston Rd, Land O Lakes, FL 34639 Elan Spanish Springs In Spirit Senior Living (Free Respite Care During Meeting - Must Call To 4th Tuesday of the month at 1:00 PM 3260 N. McMullen Booth Rd, Clearwater, FL 33761 RSVP) Leader: Kathleen Miller 727-236-7659 3rd Friday of the month at 2:00 PM 930 Alvarez Ave, Lady Lake, FL 32159 PASCO - WEST Leader: Amy Pajak 727-726-5090 4th Thursday of the month at 3:00 PM Leader: Paige Booth 352-300-1089 Market Street Memory Care Residence Brookdale New Port Richey Mission Oaks Virtual Group 6400 Trouble Creek Rd, New Port Richey, FL 34653 10780 N US Hwy 301, Oxford, FL 34484 4th Thursday of the month at 2:30 PM 3rd Tuesday of the month at 6:00 PM 2nd Monday of the month at 2:00 PM Co-Leaders: Linda Pinke 727-202-9314 Leader: Cheryl Fletcher 352-409-5360 Leader: Sylvia Mencik 727-359-5430 Sheryl Hanson 727-773-6623 New Covenant United Methodist Church Elder Assistance (Free Respite Care During Meeting - Must Call To 4109 Little Rd, Ste. 102, New Port Richey, FL 34655 SUMTER RSVP Space is Limited) 3470 Woodridge Drive, The Villages, FL 32162 4th Wednesday of the month at 9:00 AM American House Every Thursday of the month at 10:00 AM Leader: Melanie Holmes 727-255-3592 Day-Break Club Support Group Co-Leaders: Pat Kronk & George Dunne First Baptist Church New Port Richey 7676 Rio Grande Blvd, Wildwood, FL 34785 Contact Congregational Care Office: 352-750-4529 6800 Trouble Creek Road, New Port Richey, FL 34653 1st Tuesday of the month at 1:30 PM Sumter Place in the Villages 2nd Thursday of the month at 1:00 PM Co-Leaders: Cindy LaDow 574-721-0700 (Free Respite Care During Meeting) Leader: Lois Petermann 727-849-4210 Larry Koenig 760-703-0913 1550 Killingsworth Way, The Villages, FL 32162 4th Tuesday of the month at 10:00 AM Grand Villa Senior Living Community Brookdale Place at Freedom Pointe Leader: Julie Stepp 352-674-3713 6120 Congress St, New Port Richey, FL 34652 RSVP to 352-674-3950 - Light Lunch is served The Willows at Wildwood 4th Thursday of the month at 2:00 PM 1700 El Camino Real, The Villages, FL 32159 (Free Respite Care During Meeting - Must Call To Co-Leaders: Sylvia Mencik 727-359-5430 2nd Wednesday of the month at 12:00 PM RSVP) Dina Giannet 727-204-0083 Leader: Tonya Bolling 352-674-3950 4725 Bellwether Ln, Oxford, FL 34484 1st & 3rd Monday of the month at 3:00 PM The Watermark at Trinity Cypress Care Center Please call for more information: 352-430-0076 1960 Blue Fox Way, Trinity, FL 34655 490 S. Old Wire Rd, Wildwood, FL 34785 1st Tuesday of the month at 10:30 AM Every Monday of the month at 9:30 AM Leader: Carly Pelland 727-493-4536 Co-Leaders: Phyllis Petty 352-748-3191 Hudson First United Methodist Church Joyce Barney 706-897-3131 13123 US 19, Hudson,FL 1st Tuesday of the month at 10:30 AM Leader: Laura Arnold
DONATIONS, CONTRIBUTIONS & MEMBERSHIPS
Generous Donations from October 2020 to December 2020
CONTRIBUTORS/DONATIONS Joanne and Gary Leonard IN MEMORY OF DONATIONS Eleanor Johnson Ann and Charles Anderson Timothy Gray IMO Kathy Gray David Kirkpatrick Robert and Kathy Mull Marvin Ummel IMO Bonnie Ummel Paul Reyes Joan Calhoun Ronald Williams IMO Ann Williams Laura Arnold Dennis and Sylvia Perrien Estelle Rosen IMO Erwin Waldman Support Group in Pasco County Dean Liotta Sunlake Social Club IMO Shirley Kessinger Charles and Cynthia McCloskey Deborah Morda Marialana Morvillo IMO Ann Maria Sammon Mary Kent IHO Parady Diane Wolpert Ruth Ann Dolan IMO Ann Sammon Alan and Marcia Cossetti IHO Parady Rena and Myron Gnadt Ralph Hartke IMO Beverly Hartke Barbara Leonard Amazon Smiles Donation Esther Meinhardt IMO Lionel Pavey Thomas and Constance Beil Paul Reyes Sunlake Social Bingo Club IMO Donald Cole Marianne Wiebalk Susan and Dennis Antola Russell and Virginia Moffett The Blackbaud Giving Fund - Your Cause Geraldine Swartzbaugh Thomas and Nancy Allmon Fred and Linda Daniels Karen Leland Anita Lawton Rose and Carmine Guido Dr. Robert GoldTHANK Mary Darling YOU Visiting Angels - BOD Sumter Peg Joellen Kane Fred and Linda Daniels Pickett Robert and Billie Thatcher IBM Employee Larry and Lynn Wallace Lori Pierce Jeff and Julie Stein Tyler Borowski Network for Good Albina Grignon IHO Parady IBM Employee Anonymous IBM Employee Stedman Clinical Trials Robert Cole High Point Lions Club Edward and Beverly Fink Joseph and Gail Repetti Susan and Robert Ryan Network for Good Anthony and Rita Carlisi Richard Conlin Alzheimer's Family Organization - Caregiver's Companion 5 AFO EDUCATION 2021 2021 Educational Series Learn helpful information about Alzheimer’s and dementia at our FREE Caregiver Learning Events! These events last from 10:00 AM to 12:00 PM unless otherwise noted. 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.
MANAGING BEHAVIORS OF THOSE WITH DEMENTIA January 15 - Speaker: Gary LeBlanc KNOWING WHEN IT'S TIME TO PLACE YOUR LOVED ONE WITH DEMENTIA February 19 - Speaker: Dr. Jim Deutch COLORS & CARE March 19 - Speaker: Dr. Joshua Frietas PLACEMENT OPTIONS TO CONSIDER April 16 - Speaker: Lisa Honka
FALL PREVENTION May 21 - Speaker: Bill Tuttle, Senior Helpers OPTIMIZING YOUR BRAIN June 18 - Speaker: Dr. Mary Steadman, Stedman Clinical Trials WANDERING & PREVENTION July 16 - Speaker: Sharon Doncourt, Sumter County Sheriff UPDATES IN RESEARCH August 20 - Speaker: Jeff Pohlig, MBA, Charter Research END OF LIVE September 17 - Speaker: Cindy LaDow, RN, MSM CAREGIVER PANEL October 15
UNDERSTANDING TYPES OF DEMENTIA November 19 - Speaker: Kathleen Winters - Executive Director of Alzheimer's Family Organization
6 Alzheimer's Family Organization - Caregiver's Companion CAREGIVER'S CORNER Changes in Our Loved One’s Care Before and During COVID Vicky Martinez
What emotions do you feel when you hear the diagnosis of Alzheimer’s or Dementia with your loved one? It can put you through so many different emotions, like uncertainty, During our visit there was an incident that confirmed there anger, confusion and not knowing what lies ahead. If was seriously something wrong. You see, he grew up in the you’ve experienced this journey with a family member town we moved from, he was an officer of the law for 25 then you already know what lies ahead, but for someone years and knew the streets, the squad room he reported to like me who has never experienced this I didn’t know what every day was walking distance from our home of 14 years. to feel when we received the diagnosis that my husband While visiting back home we decided to have a big get had mixed Alzheimer’s and Vascular Dementia. And it’s together at the park with family and friends. He left to pick up even more scary when you’re told, and all my research one of our granddaughters and her son who also lived a few shows, that Vascular Dementia is fast progressing and has blocks from our old house, and that round trip should have about a 5 year life span from when you begin to see signs only taken about 20 minutes. But after almost an hour I and would probably end with a heart attack. Knowing we called him and he was lost. Turns out he was right by where are nearing that 5 years is hard because I’m now facing the he grew up and the high school he graduated from, but he reality that I may not have much time left with him. didn’t recognize any of it. I got him back on track and he was good to go, or so I thought. Another hour passed so I called A little background on my husband and who he was prior him again and he was sitting in a parking lot with no idea of to this disease taking over his mind and body. He was where he was. Turns out he was within a few blocks from always a very caring, loving & giving man. He was always both our former home and the squad room he reported to laid back, easy going and he was my rock. He spent most daily for years. I told him to stay put and I had someone take of his adult life serving in some way or another. He was in me to him so they could take him back to the park while I the Army for 8 years serving our country, then went into went on to get our granddaughter. law enforcement serving our community for another 25 years. We were active in our church and he was always Then to make matters worse we end up in a pandemic that giving of his time. After retiring from the Sheriff’s he just doesn’t understand. I truly believe the isolation Department, he went briefly into security work & associated with this has made things worse and seems to be ultimately ended up working in a big plant. Several years speeding up the progression. Some days he says he just ago, while working at the plant, he suffered 2 traumatic wants to die or disappear and never be found. Before the brain injuries about 10 months apart which caused some pandemic I tried to keep him busy so he wouldn’t dwell so health issues and affected his ability to work so he ended much on things that upset him. I’d take him out to car shows, up on disability. Although he had health issues caused by carnivals, parks, the beach and various other things. And we the brain injuries he was still giving of his time and always would always make our annual trip back home and we would there to help someone that needed it when he could. His have company come visit throughout the year. Although our passion was riding his motorcycle and being active with last trip was hard and I knew our travel was coming to an American Legion Riders and the Patriot Guard. We dealt end, we still had friends and family come to visit. But with this with the health issues when they arose, but we still had pandemic a lot of this has stopped. It’s been over a year now some life to live. And now, to watch a loved one being since we’ve seen anybody from back home and he just robbed of their life is very hard. doesn’t understand why we can’t go back home or why no one is coming to see us. Now the holidays are upon us and About 5 ½ years ago we decided to move from Kansas to this makes it even worse. I think in his mind he believes if he Florida and begin to enjoy our retirement. Within a year of could just go back home everything will be ok and he would moving here I began to notice things that I hadn’t noticed be fine, when in reality nothing would change in the world of before. He was forgetting things and his moods began to Alzheimer’s and Dementia. change. I grew more and more concerned that something else was going on. About 3 years ago we took our annual trip back home to see family and friends. Alzheimer's Family Organization - Caregiver's Companion 7 CAREGIVER'S CORNER
I still try to get him out for walks and stuff, but I feel the I’ve had to pretty much give up everything to care for him added feeling of isolation has made this much worse. He and just watch life pass me by. I previously was involved in has become more depressed, more angry, and I’ve noticed a lot of ladies groups and had some fun me time, but he’s become very emotional. He cries a lot and I have to those days are extremely limited as he can’t be left alone sit, sometimes for hours, and console him. Recently he and it’s costly to have to pay someone to sit with him very began sobbing because he believed he was going to die often. These expenses are not covered by insurance so it’s and no one would remember him because no one comes all out of pocket. We’re about 3 years in on this horrific to see him. journey and I’m seeking various options to get some help with caring for him in our home so I can get a break. I do I now have to help him dress, make sure he eats (or feel it taking a toll on me and I have to stay healthy so I doesn’t eat too much) because he doesn’t know if he’s can continue to care for him. As caregivers we sadly tend hungry or if he’s eaten. When he has meltdowns and to neglect ourselves. Sometimes I still get angry because insists I can stay here and he’s going to walk home (back this has taken my life away too, but I have to keep to Kansas) I just have to smooth things over by telling him reminding myself that none of this is his fault and I know I’ll look into it because he will soon forget even though I in my heart that if the shoe was on the other foot, he know it will arise again. Sometimes you just have to tell would be right by my side as I am his. little fiblets to get through the day because in the mind of someone with Alzheimer they truly believe what they say During this past year I have been part of an amazing and feel. Like if he says a green shirt is purple, you just support group for caregivers. agree because he truly believes that shirt is purple. I have It’s funny how God works because the way it happened, I learned not to try and reason with him or explain why he believe it was Godly intervention how I was connected to is wrong because it just makes us both more frustrated Laura Arnold who runs, in my opinion, the absolute best because in his mind he is right. I try to be as patient as I caregiver support group in Hudson. It isn’t just a group possibly can because they pick up on our emotions and where we can sit and cry about what we are going this can make things worse. through, but rather we cover topics that help equip us with an abundance of information and knowledge that we So how does one deal with the strain of this pandemic can use, both now and as our loved ones progress. And when the journey has been so hard already? Sometimes I the support of the group helps us, as caregivers, get feel like I just can’t do this anymore, but I go into another through this. If you have a loved one struggling with this room to cry and get it out. Although we don’t get out as horrible disease I would highly recommend seeking out a much during this time, and sadly it’s getting harder to good caregiver support group and if you are close to even get out with the progression of this disease, I still try Hudson check out the group I attend because you need all to cope with this pandemic in various ways. I tell him that the support you can get. You cannot do this alone. we will go home for a visit soon when he brings it up. I try Because of this support group I am learning to get him out to parks and walks just to get outdoors. We about many resources that I never knew existed and am go for ice cream and try to attend some outdoor gaining lots of valuable information and knowledge and neighborhood music because he still loves his music. I just am able to handle things much better as they arise. Am I sit and let him tell me the same stories over and over perfect? No, but I do the best that I can and without this again. I have to pretty much tell him that I’m working on group, I don’t know how I would get through this. anything he may bring up just to pacify him for a bit because he will forget, at least until it comes up again.
We hope that the Caregiver’s Corner gives you the inspiration you need to continue being the best Caregiver you can be. Through this tough disease, 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 encourage 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: [email protected]
8 Alzheimer's Family Organization - Caregiver's Companion GUEST ARTICLE TIME FOR YOUR FLU VACCINE Grace Gifford, BSN, RN, Florida Department of Health in Hernando County
Have you received your influenza vaccine?
According to the CDC, getting a flu vaccine during the 2020-2021 flu season is more important than ever because of the ongoing COVID-19 pandemic. Flu vaccination is especially important for adults 65 years and older due in part to changes in immune defenses as we increase in age.
In the United States, more than 200,000 people on average, are hospitalized each year for illnesses associated with seasonal influenza virus infections; and older adults account for most hospitalizations and deaths from flu. The influenza vaccine helps give your body the protection it needs to fight the flu and is the most effective method in preventing illness.
Each year, the vaccine is made up of different strains of the virus and your immune response has weakened from the previous year, so an annual vaccine is recommended to provide continuous protection. Symptoms of flu can range from a mild fever to life threatening pneumonia. Since the influenza virus spreads easily, healthy children and adults can become sick when exposed to the virus. There are high risk of serious flu complications or death if you are immunocompromised with HIV, diabetes, asthma, COPD, cancer, pregnancy, or other comorbidities.
The influenza vaccine doesn't protect just you and your family but also the people around you. It takes about two weeks for the vaccine to take effect and offer full protection. There are vaccines for children, adults, adults over 65, preservative free, and egg free vaccines so be sure to get the one that is right for you.
The CDC recommends that almost everyone 6 months of age and older get a seasonal flu vaccine each year. As long as flu viruses are circulating, vaccination should continue throughout flu season, even into January or later. In Hernando County, many of our local doctor’s offices and pharmacies offer the vaccine. Visit FluFreeFlorida.com and use the flu shot locator to find a provider near you.
Remember, to continue our good public health practices as we enter the flu season, wash your hands often and if you become sick, stay home, get rest, drink plenty of fluids, and contact your doctor or seek medical attention as soon as possible if you are getting worse instead of better.
Grace Gifford, BSN, RN, is an epidemiological nurse at the Florida Department of Health in Hernando County. She has been an integral part of the COVID-19 response taskforce.
Alzheimer's Family Organization - Caregiver's Companion 9 FROM YOUR EDITOR PARKINSON’S DISEASE Bill Tuttle, Chief Service Officer - Senior Helpers
Medical Condition A chronic and progressive movement disorder. Treatments Parkinson's disease cannot be cured, but medications can Common (More than 200,000 cases per year in US) help control symptoms. In some later cases, surgery may be advised. Often requires lab test or imaging Medication Dopamine precursor: Drug which can pass through to Treatments can help manage condition, no known cure the brain and readily get converted to dopamine. Helps in managing Parkinson's disease. Can last several years or be lifelong Levodopa Parkinson's disease is caused by a loss of nerve cells in Catechol-O-methyltransferase (COMT) inhibitors: substantia nigra of the brain. This leads to a reduction in a Inhibits the action of catechol-O-methyl transferase chemical called dopamine in the brain. Many different an enzyme which is involved in degrading symptoms are associated with Parkinson's disease and neurotransmitters. the more common symptoms are slowness in movement Entacapone · Tolcapone · Opicapone · Nitecapone and muscle stiffness. Currently there is no cure for Dopamine agonists: Activates dopamine receptors Parkinson's disease. But treatments are available to help relieve the symptoms and maintain quality of life. These and helps in managing the disease. treatments include: - Supportive therapies – such as Bromocriptine · Pergolide · Pramipexole · Ropinirole physiotherapy - Medication - Surgery MAO-B inhibitors: Increases the amount of dopamine in the basal ganglia by inhibiting the activity an Symptoms enzyme that breaks down dopamine. Parkinson's disease symptoms may vary from person to Safinamide · Selegiline · Rasagiline person. Early signs may be mild and may go unnoticed. Medical procedures: Deep brain stimulation · Symptoms often begin on one side of the body and Carbidopa/Levodopa enteral suspension · Thalamotomy · usually get worse on the same side, even after symptoms Pallidotomy begin to affect both sides. Therapies: Physical therapy · Occupational therapy Signs and symptoms may include: Tremors, trembling of hands, arms, legs, jaw and face Causes Stiffness of the arms, legs and trunk Though it is known that Parkinson's disease is caused due Slowness of movement to the death of dopamine secreting neurons in the brain, Poor balance and coordination the exact cause of this damage is still unknown. Speech difficulty It is believed that environment and genetics play a role. Certain medications, toxins and other diseases can produce symptoms, similar to Parkinson's disease, and then it is known as secondary Parkinsonism, which may be reversible
Data from Focus Medica. Reviewed by a panel of doctors. Consult a medical professional for advice.
10 Alzheimer's Family Organization - Caregiver's Companion COMMUNITY EDUCATOR'S REPORT The Villages & Marion County Jackie Kuhn-Damron - AFO Community Educator
Greetings All!
It is hard to find words to share what has all happened NCUMC Support Group in the past three months. I know we are all ready for Thursday’s 10:00-11:00 (Zoom or Conference Call) things to get back to some type of normalcy. We have all George Dunne 352-433-8261 been challenged to think outside the box and be creative in our daily activities. North Lake Presbyterian Wednesday’s at 2:00 (Zoom Call) As you have heard or seen something in the paper, AFO Dean Vetter 352-350-4027 has been challenged to find ways to host fundraising to Louise Shuey 352-753-8262 be able to keep our services in place. As you know fundraising is Day Breakers Support Group 1st Tuesday of the month our biggest opportunity to raise 1:00-2:00 at O’Dell Recreational Center money to serve our Caregivers. Cindy LaDow 574-721-1177 We have had some virtually with some success but not like it is I know this has been a difficult year and we all pray that with face to face. When the 2021 will be a better year for all. I pray your holidays newspaper put the article were blessed and a Happy New Year is in our future. in, I received a call from two entertainers wanting A Servant’s Heart, to do driveway concerts Jackie Kuhn-Damron for us. We had a great response and all were generous in their donations. A big “thank you” to Super Tenor Mark Schmidt for his songs from Elvis Presley and Tom Jones. Also many hit songs Community Educators are in your area to educate and were sung by Billie Thatcher and accompanied by Kevin bring awareness. If you have a group, club or meeting that O’Connell. Both nights, we enjoyed two great talents you would like to have an AFO Educator speak at, reach out from The Villages. to us to schedule a date!
Jackie Kuhn-Damron | 574-721-1177 I have also enjoyed doing an educational series [email protected] sponsored by “Your Key to Senior Living Options” owned by Lisa Honka. I have also started doing some one on ones as families have needed that support and encouragement.
Our support groups continue with conference calls and zoom. A few have tried to restart as we did in the past but then decided it was best to wait until Covid-19 settled down. Here is the information for contacting these groups if you wish to participate:
Alzheimer's Family Organization - Caregiver's Companion 11 FUNDRAISERS & EVENTS
THANK YOU TO OUR FOOD SPONSOR:
12 Alzheimer's Family Organization - Caregiver's Companion COMMUNITY EDUCATOR'S REPORT Lake & Sumter County Jamilya Rahming - AFO Community Educator In my previous article, I announced our Happy New Year!! Virtual Caregiver Learning Day in September. We were so excited to host Waterman Village We have officially crossed over into 2021! 2020 was a year of Mt. Dora! Our speakers Joshua Freitas and Melissa like no other. Full of uncertainty, isolation, and division. Sandberg with Cornerstone Hospice shared a plethora of We have seen better days, but I am hopeful that 2021 will information and resources. You all loved the topic from bring healing and some sense of normalcy to our lives. As Joshua Freitas so much that we’ve asked him to join our you may know, the pandemic deeply affected the AFO and educational series next year. He will be speaking on colors we made many major changes to our operations and and how they can help your loved one. Register for this services. Through it all, we still continued to connect with event and other educational days by visiting you all through phone calls, virtual support groups and www.Alzheimersfamily.org/Caregiver individual meetings.
You don’t want to miss this! In the later half of 2020, we released our annual appeal in hopes to keep the AFO a float. Due to your support, we I pray that your holidays were special and full of cheer! I are still able to provide services for you all. We were am hopeful that in 2021 we will be able to spend more featured in the Triangle News Leader paper on October time together in person. Always remember that you are 8th and received a great response from the community. I not alone and I am one call away! would like to give special recognition to Lake Ridge Village in Eustis, FL, for hosting a fundraiser for us in the midst of Jamilya a pandemic! On October 29th, the facility hosted a Fall Festival for their residence and all the proceeds went towards the AFO. Thank you so much, Patricia for orchestrating this and thinking of us! We are forever grateful for your support of our organization!
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 | 352-396-2614 [email protected]
Alzheimer's Family Organization - Caregiver's Companion 13 IN THE KNOW Coronavirus (COVID-19) versus Influenza (The Flu): What to expect and tips for Dementia Caregivers Lauren Dedea, M.D. - Family Medicine Physician at Bayfront Health Medical Group Regarding those with Dementia, such as A common misconception, “COVID-19 and the Flu are one Alzheimer’s or Parkinson’s, dementia itself and the same”, is completely inaccurate. Since December s not a risk factor for COVID-19 or the Flu. However, 2019, COVID-19 has killed more people in the U.S. to date dementia-related behaviors such as need for feeding, than influenza has in the last five years combined. With no bathing, and overall personal hygiene, associated preexisting immunity to SARS-CoV-2, virtually everyone is comorbidities, and social settings that often accompany susceptible to infection. As of now, we do not have specific dementia may increase the risk of exposure and symptom treatments for COVID-19 like we have for influenza. presentation.
There is overlap in terms of symptom presentation; however, As a primary care physician, my patient’s symptoms vary larger numbers of susceptible people and increased rates of significantly, though the patient is often able to trace a both severity and complications set the two apart. possible time they were exposed or knew of someone they were exposed to that had tested positive for COVID-19. COVID-19 and influenza viruses both cause respiratory Symptoms such as a sore throat, acute onset of cough, illness. Viral upper respiratory infections have a wide range of fatigue, headache, heaviness in chest, wheezing or illness. This can vary anywhere from asymptomatic through “asymptomatic but knew” they were exposed. COVID-19 can to severe disease and death, running the entire gamut of be confirmed with a rapid test. At this point in time, I have possibilities and combinations in between. Both viruses are patients get tested then discuss symptoms in a telemedicine transmitted by contact, droplets (coughing or sneezing) and encounter, and treat the patient based of their symptoms. fomites, basically objects we can touch like door handles. Red flags such as shortness of breath, chest pain, worsening headache, delirium, and confusion, I immediately send to the The speed of transmission is an important point of difference ER. Patients are treated in accordance with CDC guidelines between the two viruses. Influenza has a significantly shorter including when to test and quarantine time frame, currently incubation. One is potentially able to spread COVID-19 for five to seven days following symptom resolution. five to thirteen days after exposure (during which they may have no symptoms) whereas Influenza infected individuals As for Influenza, the symptoms tend to hit hard and abrupt. tend to show symptoms within two days following exposure, Flu can be confirmed with a rapid test as well. Patient’s typically limiting who they will choose to come into close usually feel severe headaches, muscle pain, chills, and fever contact with after. of around 102 and lasts about 3 to 5 days. Most of the time, it is treated symptomatically meaning Tylenol for fevers, Mortality for COVID-19 appears higher than for influenza. ibuprofen for muscle soreness, and many can be prescribed While we are still learning about COVID-19 sequelae, the data an antiviral outpatient if the illness started within 48 hours. If collected by the World Health Organization (WHO) have so far symptoms worsen and develop into shortness of breath, indicated that the crude mortality ratio (the number of confusion, severe weakness, patient is strongly advised to go reported deaths divided by the reported cases) is between 3- to the ER. 4%, the infection mortality rate (the number of reported deaths divided by the number of infections) will be lower. For Dr. Anthony Dedea works as a Core Faculty with Nature Coast influenza, mortality is usually below 0.1%. However, there are Family Medicine residents in both an inpatient and outpatient many risk factors that play a role regarding mortality and setting. “From a Hospitalists perspective, many of the outcome of a disease such as access to healthcare, chronic patient’s in our community, especially the elderly that get conditions, access to test centers. admitted for COVID-19 end up getting transferred to ICU”, said Dr. Anthony Dedea. “Many admissions in otherwise Those most at risk for severe complications of infection with healthy individuals are for the worsening symptoms. As either influenza or COVID-19 include elderly, those with always, difficulty breathing, and chest pain are medical underlying chronic medical conditions, those with higher BMI, emergencies and treated as such. One early discovered smokers, and those who are immunosuppressed. Children complication of COVID-19 has been propensity to clotting. under twelve years of age and pregnant women seem to be This can be seen in the arms or legs but can travel to lungs as at higher risk with influenza than COVID-19. a pulmonary embolism which is life threatening”, added Dedea.
14 Alzheimer's Family Organization - Caregiver's Companion “Admission inpatient allows for some medications that need to be administered intravenously (through catheter in the vein), such as the newer antivirals, the recommended dosing of steroids, even antibiotics if physicians are concerned that a patient has developed a bacterial infection due to their weakened state from COVID. Ultimately, patients are in the right place if they do require intubation for respiratory failure. Hospitals are and always will be essentially a “stress test” for individuals with dementia, often inciting delirium”. As a caregiver for someone hospitalized: Talk with the care team (nurses, pharmacists, doctors) daily COVID-19 and Influenza can both have profoundly serious Bring items from the patient’s home like a familiar robe, and deadly outcomes. It is important to practice social blanket, and pictures distancing, wear masks when out in social settings or around When talking with them try to remind them of the day, loved ones that are at risk, hand washing, stay up to date on date, season, relatives, and recent events that you would vaccines. Every fall the Flu vaccine becomes readily available expect them to recall under more normal circumstances and it is recommended to receive it. Stay active either by walking or biking, boost immune system with supplements While many hospitals are restricting or limiting visitors to such as Vitamin D and Vitamin C. Try to go shopping during help stop the spread of COVID-19 and protect patients and hours businesses are less active. Encourage any home health staff, there are still ways to support the person living with worker to wear a mask and have hand sanitizer readily dementia during their hospitalization. CDC guidance allows available if they are making in home visits. Have disposable care partners of persons with dementia to visit if they are towels in the bathroom instead of one hand towel to limit essential to the person’s physical or emotional well-being. contamination. Stay connected with other friends and family Here are some recommendations when visiting a person in through video conferencing. the Hospital room: Bring your own unused/washed face mask and put it on At this time, one of many SARS-CoV-2 vaccines has been before arriving at the facility. approved for emergency use by the FDA and is expected to Wash your hands regularly and/or use the hand sanitizer be available early 2021 to healthcare worker and long-term and avoid touching your face. care facility residents, followed soon after by those with Limit your visit to the room of the person living with chronic medical conditions. Consider continuing safe dementia. measures even after receiving the vaccine until further If you are unable to visit in person, communicate by studies and cases have been evaluated. calling the nurse and having her put you on speaker phone to talk.
To schedule an appointment with Lauren Dedea, M.D. visit Many of my patients that have dementia and live at home BayfrontDoc.com or call 352-683-5141. come to their appointments with their caregivers. For the Caregivers, I always recommend using CDC as a tool for safety concerns. Often times I get asked questions about symptoms one should look out for. My recommendations are as follows:
For people living with dementia, increased confusion is a red flag. If a person living with dementia shows rapidly increased confusion, call the Primary Physician. If the person is having difficulty breathing or has a fever, take them to the Emergency Room. Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy. Think ahead and make alternative plans for care management if the primary caregiver should become sick.
Alzheimer's Family Organization - Caregiver's Companion 15 VOLUNTEER SPOTLIGHT Kim Washington Kathleen Winters - AFO Community Educator I am a wife, mother, daughter, sister, friend and community giver. I am also an entrepreneur in the direct selling industry. I am originally from New Jersey and relocated to Florida in 1997 with my husband, Dave. We were ready to say goodbye to the snow and say hello to the sunshine. We left both our families behind to start on a new adventure together. We have two My mom was challenged much more with the disease. After teenagers and a Yorkie now. The hardest part of relocating so my dad passed, March 2016, she decided to move to an far away was leaving family behind. And in the last 8 years independent living facility where soon I had to hire a 24-hour even harder. aide to care for her. After a year or so, she was forced to move into the facility’s nursing home. She can hardly speak when we After my dad suffered his first Transient Ischemic Attack (TIA,) Zoom together. She is however, stable and seems happy. A it was decided that my parents should move into a 55+ few laughs here and there come out during our virtual time. I community to help eliminate maintenance and other don’t miss calling her on a payphone at the behavioral institute homeowner responsibilities. My dad was not on board with she was put in for weeks at a time for her aggressive behavior, the move and began to alienate himself from things he once or having to call the local police department to have them enjoyed with my mom. As time passed, he became extremely make welfare checks on her because she failed to hang up the aggressive with my mom and people. He was accusing others phone, or receiving middle of the night calls from the police including my mom of taking his pens and moving things. While because she fell, but I do miss our real chats, her smile, her he was already a type A personality it just became more natural ability to encourage me and how happy she always exasperated. So many things changed for him and for our makes me feel. family the day we found out he was suffering from Dementia. I lost ‘my dad’. I was daddy’s little girl and it was so hard to see I was so glad I was introduced to AFO and Kathleen Winters, him this way. He had sundowner’s syndrome most often than Executive Director. Through donations of my time, money and not. We put in him in adult daycare to take some stress off of tote sponsorships and now with jewelry, I was able to give my mom and to give her some time back for her. The time back to other caregivers. It is important to me that caregivers came however, when then my mom began showing signs of be recognized for all they do to take care of a loved one or Dementia. We brought in an aide for additional assistance. At someone with the disease. In addition, I have been able to first to care for my dad and eventually to assist with my mom. assist the AFO staff on one of their fundraising committees for It was hard being long distance and trying to understand all their annual fashion show and attend as a guest at several what was going on in their home. I would hear more yelling on functions. This helps me to honor both my parents. I am truly the phone between my parents than anything. It was difficult grateful that AFO and the staff exist to support not only to help from afar. I was somewhat in the sandwich generation caregivers but the community. It is truly an amazing group. We trying to provide caregiver assistance for them while taking must all continue to fight the fight and make a difference in care of my 2 children. the lives of our loved ones and their support system.
While I have two siblings who live in New Jersey, it was not Thank you for having a Servant’s Heart! uncommon for us to be on different pages for how to provide the best and safest care options for them both. There was a lot The AFO Staff dysfunction in the decision making and it was hard being long distance to the process. After a couple of years of my siblings taking care of their needs and making decisions, it was then redirected to me. Trying to find/interview caregivers long distance became a 2nd job for me. One however, I do not regret. While I don’t miss receiving the police or hospital calls that came in the middle of the night when my parents caused a scuffle at home with each other and had to be hospitalized and even institutionalized, I do miss hearing my dad’s voice, his hugs and his asking where his ‘honey bunnies’ (grandchildren) are.
16 Alzheimer's Family Organization - Caregiver's Companion IN THE KNOW Memory Care in Assisted Living, Is it Their Home or Their Confinement? Avi M. Elias, MHSA, NHA - Executive Director, The Residence at Timber Pines
You have been confronted by the difficult decision of having to place your loved one – mother, father, grandparent, or spouse – living with dementia in a secured living environment for both their safety as well as the assistance they need with their activities of daily living that is increasingly difficult to provide at home to ensure your loved one has the highest possible quality of life.
For many assisted living communities, it is easier for the staff to get everything done in a short period of time by doing things for their residents. This has the unfortunate side-effect of making those for whom we care become dependent upon us. This dependence, while coming from a good place, can contribute to a more rapid decline. As the old adage goes, “if you don’t use it, you’ll lose it!”
When evaluating an assisted living community in which you might place your loved one living with dementia, ask various members of that community about their philosophy of care. Ask more than just their sales director or administrator. Ask their caregivers! Make sure their answers are in alignment and not just paying lip service to get your loved one moved in.
An increasingly popular approach to care is to apply the principles of Maria Montessori, principles most commonly recognized for teaching children, to how we care for seniors living with dementia. At the most basic level, the Montessori approach is based on the concept “that which you do for me, you take from me.” With this mantra, the community staff will be doing things with your loved one, not doing things for your loved one. Your loved one will find new ways to engage with their new environment to create a quality of life you may have thought has long passed.
Most frequently, Montessori is thought of in terms of “chores.” You may be thinking to yourself, why should I pay to have my loved one live in an assisted living community only to be put to work? My loved one is retired! They need to be able to relax and enjoy live! Such an approach to memory care creates an environment of “heaven’s waiting room.” Would you want to live in a place where you are told what you can do when, or you can only do “x” or “y” at a particular time or would you want to live in an environment where your wants and needs are met in a manner that adds purpose back into your life? Purpose is such an important part of life. Purpose is what keeps us getting up and out of bed every day!
It is easy for an assisted living community serving seniors living with dementia to say they will take good care of your loved one. In your role seeking to find the best possible community for your loved one, you must look deeper. You must evaluate the type of care they provide and how they provide it to ensure it matches your values and will meet the unique needs of your loved one living with dementia.
Alzheimer's Family Organization - Caregiver's Companion 17 RESEARCH CORNER 6 Alzheimer’s Research Updates You Should Know Caroline Ster & Carly Graber
It can seem like there’s a new Alzheimer’s “breakthrough” almost every day. We sift through the headlines and pull together the true, reputable research updates for you. Here are six things you should know about Alzheimer’s and dementia research from the last month.
1. New research says Alzheimer’s and other dementias will hit minorities hardest According to research from the Centers for Disease Control and Prevention (CDC), the prevalence of Alzheimer’s disease or a related dementia will increase 178% among all Americans aged 65 years and older by 2060. Dementia is predicted to double from 1.6% of the population in 2014 to 3.3% by 2060, when 13.9 million Americans are projected to have the disease. The highest numbers will be among Latinos, African Americans and other ethnic groups because these groups will experience the highest rates of population growth in the coming years. Read more about why Alzheimer’s and other dementias will hit minorities the hardest here.
2. Wiping out the brain’s retired cells prevents a hallmark of Alzheimer’s Some brain cells enter a state called senescence: They don’t die, but they permanently stop growing and dividing. These retired cells accumulate as we age, but continue to secrete molecules that trigger inflammation. By removing senescent cells from mouse models, buildup of tau protein was prevented, leading to less neuronal loss and more intact memories. The concept of going after senescent cells is new. There are several “senolytic” drugs that can target and kill senescent cells, with some (like Navitoclax) already approved for treating cancers. Read more about senescence here.
3. Targeting Dkk1 protein could explain failed clinical trials for Alzheimer’s According to researchers at King’s College, when beta-amyloid destroys a synapse, the nerve cells make more beta- amyloid driving destruction of more synapses. Once this feedback loop gets out of control it is too late for drugs which target beta-amyloid to be effective, possibly explaining why so many Alzheimer’s/dementia drug trials have failed. The Dkk1 protein, which stimulates the production of beta-amyloid, was found to be the key to this destructive feedback loop. Targeting Dkk1 could halt the progression of Alzheimer’s or a related dementia. Read more about Dkk1 here.
4. Relationship between statin use and dementia risk A large observational study on a diverse cohort found that cognitively normal people who took statins regularly over a three-year period were 10% less likely to develop Alzheimer’s disease or a related dementia than those who took them part-time. A 2018 meta-analysis found that statins users, without baseline cognitive dysfunction, had a significantly reduced risk of developing all-caused dementia (15.1% lower), Alzheimer’s (28.1% lower), and MCI (26.3% lower). In addition, A recent review of current literature found that statins are potentially responsible for both reversible short-term cognitive impairment as well as a decreased risk of dementia. Most evidence showing that statins prevent Alzheimer’s disease includes persons with high cholesterol exposed to statins at mid-life as opposed to late life.
18 Alzheimer's Family Organization - Caregiver's Companion RESEARCH CORNER
5. Generation Program tests prevention drugs in people at genetic risk for Alzheimer’s A collaboration by Novartis, Amgen and the Banner Alzheimer’s Institute on the Generation Program recently surfaced in the news for testing two drugs: CAD106 and CNP520. Both of these drugs attack beta-amyloid differently: CAD106 is an active immunotherapy that triggers the body’s immune system to produce antibodies that attack different forms of amyloid while CNP520 inhibits beta-secretase, an enzyme that helps turn a normal protein into harmful beta-amyloid. Read more about this clinical trial here.
6. New local study for mild to moderate Alzheimer’s disease A Phase II study will evaluate the safety, tolerability and feasibility of an intravenous infusion of GRF6019, a plasma- derived product, to treat older adults with mild to moderate Alzheimer’s. Research indicates that proteins in the circulatory system can affect motor and cognitive function and points to the beneficial effects of factors present in healthy plasma. This trial is currently enrolling through Pacific Research Network in San Diego.
Alzheimer's Family Organization - Caregiver's Companion 19 20 Alzheimer's Family Organization - Caregiver's Companion Caregiver's Companion PO BOX 15489 Brooksville, FL 34604 352-616-0170 [email protected] www.alzheimersfamily.org
We help families and loved ones with all different types of dementia, we help with more than just Alzheimer’s!
JUST A FEW OF THE SERVICES Support Group Leader Training Alzheimer’s Resources and THE AFO OFFERS: The AFO is always looking to provide support Related Books group leader training to those volunteers looking Helpful books in our library are available for to lead a group. To become a support group Wanderer’s Reunification viewing at the AFO office or may be loaned out. leader, please contact the office and we will Program arrange for training. Once trained, a leader will The objective or goal of the Wanderer’s Speaking Engagements be able to facilitate a support group, through the Reunification Program is to identify and support of the AFO, which is a wonderful Alzheimer’s Family Organization members are reunite a loved one with Alzheimer’s resource for caregiver’s as they walk the journey available to speak to community groups, clubs, disease or other form of dementia with of Alzheimer’s disease or other related and organizations about Alzheimer’s disease. their caregiver as quickly and as safely as dementias. possible, thus reducing the time of Memory Screenings separation and trauma to the loved one. Alzheimer’s Disease and Related Memory screenings are simple and safe “healthy There are two options offered under brain check-ups” consisting of a series of this program; Dementias (ADRD) Curriculum & questions. This screening can provide a baseline 1.) An Identification Bracelet or Pendant Training for a person regardless of whether or not there is 2.) A Human Scent Kit Training is provided for caregivers and a concern of memory loss. This screening can Contact our office for more information. professional care providers to those suffering also aid in a referral should a person have a from Alzheimer’s disease and related dementias. concern about memory loss. A screening is not a Support Groups ALF, Nursing Home, and Home Health Agency diagnosis…but can provide guidance on the need AFO support groups are for family Dementia Specific Trainings are available to for further investigation of a concern. members, caregivers, and others professionals and approved by Florida interested in learning more about Department of Elder Affairs and USF. Pardon My Companion Card Alzheimer’s disease and coping skills. The These cards enable caregivers to provide meetings are free and everyone is Caregiver Learning (Training Sessions) information about Alzheimer’s disease and an welcome. For more information and to Caregiver Learning events provide caregiver’s explanation concerning any unusual behavior by verify meeting dates and times, please with important community resources as well as the Alzheimer’s patient while in public. contact our office. guidance and training on how to cope with the challenges of caregiving. Each event is catered to Do Not Resuscitate Order Forms Resource Lists the needs of the community in which the learning A properly executed DNRO stating the patient is Our resource guide office a variety of event will take place, hence over the calendar terminal must be signed by the patient’s services by county, that support caregivers year, providing a variety of topics and resources physician. Emergency Medical Services are with the many issues that may arise while to support caregiver’s and their loved ones directed to honor a DNRO and provide the dealing with the day to day challenges of walking caring for their loved one. Services such as, patient with comfort care only. The form must be this journey. but not limited to: Elder Law, Assisted with the patient and is available at the AFO office Living Facilities, and Home Health Agencies.