Dorothy Dorton, AARP Associate State Director, will present information at the E. A. Roberts Alzheimer’s Adult Center next Educational Dementia Support Group meeting that will help caregivers learn how to build a support team. Mrs. Dorton has a Master’s Certification in Gerontology, is a Certified Therapeutic Recreation Specialist, and is trained through the Alabama Dementia Education Training Act. She knows how important it is to share the care with others.

E. A. Roberts Alzheimer’s Center is located at 169 Mobile Infirmary Blvd, Mobile, AL 36607. For more information, call 251-435-6950.

Lee Felis, MOT, OTR/I of Mobile Infirmary will present this topic at the next Educational Support Group at E. A. Roberts Alzheimer’s Center.  The meeting begins at 10:00 AM on Thursday, April 13, 2017.

Complimentary care is available during the meeting.  Please call 251-435-6950 for more information.

Located at:  E.A. Roberts Alzheimer’s Center

169 Mobile Infirmary Blvd.

Mobile, AL  36607

BETH REINERT – GUEST OPINION

Advocate seeks to change perception of dementia

Have you ever been asked the question, “Who would you most want to have dinner with?” My answer is Teepa Snow, an award-winning occupational therapist who has made it her mission to help family and professional caregivers do a better job of caring for people with dementia.

Snow is a mentor and voice of confidence for the millions living with the disease. I have learned from her teachings to better understand how to help my mom live with dementia.

I caught up with Snow recently in Mobile while she was there for a speaking engagement. We chatted for several hours about our shared focus: advocating for men and women who have dementia.

Dementia is an umbrella term that covers 70 to 80 conditions of brain failure. A dementia diagnosis is lifealtering for not only the person living with the disease, but also for the person’s family.

More than 50 percent of diagnosed types of dementia are Alzheimer’s cases, but often a secondary dementia emerges as the disease progresses.

Alzheimer’s disease is the sixth-leading cause of death in the U.S. No pill will take this problem away, so the key to a positive outcome is how caregivers manage our actions, words and reactions.

Snow has a message not only for families and care professionals, but also for all of society. “Policemen, firefighters, emergency room workers, postal service and bank employees all need to be familiar with the signs of dementia.” she said.

“We as a society must have a basic awareness of dementia and embrace people living with dementia instead of labeling them as demented people.”

Snow wants to change the perception of how dementia is viewed, take away the negative terminology and create the right setting and care for men and women with dementia.

At risk herself

Snow’s popularity took off in the late ‘90s after she presented a staff training model at the International Alzheimer Meeting in Washington, D.C. Her DVD, “Accepting the Challenge,” has been widely distributed. She is the most prominent educator for training on all aspects of Alzheimer’s disease care. That is why her calendar is booked through 2015.

Snow also has a history of dementia on both her mother’s side and father’s side of the family.

She knows she is at risk for developing the disease, so she is living life carefully by making good choices. She keeps physically fit, manages stress with yoga and deep breathing, and eats well.

Snow’s website, teepasnow. com, is full of information that both professional and family caregivers should see.

Free webinars can be accessed from her Dementia Care Academy, and DVDs are available for purchase. Not everyone can attend her workshops, but anyone with Internet access can learn from her teachings.

With the coming tide of senior baby boomers on the horizon, everyone needs to know about dementia. We should all get to know what Snow has to say about it.

Beth Reinert advocates for people living with Alzheimer’s disease. She authors the blog Caregiversunite.org, which includes general news and advice for families coping with the disease, along with event listings for the south Alabama area.

Printed in AL.com, Press-Register, September 18, 2013, page 10A

My family did a cell phone intervention with me two years ago. I had held on to my original cell phone plan for many years and resisted any changes.  So when they transferred my number to a smart phone and a new company, I knew I was beat. I tried to keep an open mind. According to my family, now I would be able to text with them and do all the other things they could do—whatever that was.

My family was right. Once I mastered texting and using the phone, I began to explore apps.  First I followed recommended apps from my husband and son but then began to branch out and find what interested me. Since I am a caregiver for my mom who has Alzheimer’s disease, I soon found that my cell phone was my constant companion and record keeper. For example, I store information I need for doctor visits under Notes, as well as document what we discussed at the appointment. I set up Reminders for myself such as pay the private duty sitter and other bills or get medication and supplies. I have a Pill Finder app that helps me identify pills I find on the floor that Momma didn’t take and threw away. I can look up medications and their side effects if she is having some unexplainable symptoms. When we do her laundry, I can set the Timer to alert us to when the washer and dryer cycle is finished.

My phone has replaced the camera I once carried around. Just like everyone else with a smart phone, I am constantly taking photos of all the people in my family’s life. Once Momma moved to assisted living, we used photographs to help us remember faces and names of all the people that helped care for her. We set up a poster-sized frame in her room with pictures of all the employees, their job titles, and names. To boost visibility, it hung on the wall just inside her door, which encouraged many impromptu visits and comments. I was surprised to find how willing doctors are to have their photo taken with their patients. These photos would come in handy when we were about to have an appointment with the doctor and I could show Momma who we were going in to see. The pictures serve as our memory, and we can look at them over and over again.

The phone is also a resource for activities. We enjoy listening to Pandora’s easy listening music while accomplishing activities like brushing her teeth, painting her nails, or playing cards. I attach speakers to the phone to provide vintage music while leading a group exercise class for the other residents, and I can take requests without any prior preparation. Sometimes I look up words to old songs we can sing together because we’ve forgotten some of the words. Poems and even nursery rhymes are just a touch away with Internet service as part of the phone plan.

One app allows me to scan important documents and even send them by email with FasterScan, which expedites duties like filling out paperwork for moving into skilled care. I no longer have to be home to receive phone calls, send emails, or handle bank business. I can manage these responsibilities and still be with my mom. I finally have learned to complete as much information as I have on a phone contact to save time for future communication. I can text messages with Momma’s private sitters and receive an immediate response when needed. For my peace of mind, they have sent me photos of Momma while she is in their care just to let me know what they are doing. When I’m with her, I can send a text and photo to one of my children and share a response on the spot.

Even though cell phones are relatively new, Momma has embraced the little rectangular box we carry around that emits music and provides amusement in so many ways. I usually hand it to her to hold when I am pushing her in the wheelchair when we have the music playing. Because of her failing eyesight, the bigger screen of a computer or iPad is a better choice if I want her to see specific pictures clearly. However, for daily use and ease of transporting, my cell phone is all we need.

I follow this group on Facebook and have downloaded their brochure as follows:

If you or a loved one suffers from Alzheimer’s, Early Onset Alzheimer’s, or another Dementia related disease, if you are an advocate, or want to know more about these diseases, we invite you to join us. Memory People™ is a Facebook group founded by Rick Phelps who was diagnosed with Early Onset Alzheimer’s Disease June of 2010. Rick saw the need for real time interaction for all those touched by these diseases. At Memory People™ you will find care and support in a comfortable and safe environment where patients, caregivers, and all involved come together to share our stories, support each other, and bring awareness to these diseases. First, you will need to have a Facebook account to join us. From your Facebook home page type Memory People into the search bar. Then click on Memory People, and you will be taken to our home page where you can read about our group. Then, just click on the “Join Group” button and one of our Administrators will add you. If you or a loved one have been touched by Alzheimer’s or another Dementia related disease we encourage you to join us at Memory People™.
bringing Awareness, one person at a time
Rick Phelps
Founder, Memory People
Cell 740-294-2456
phelps2645@gmail.com
Leeanne Chames
Personal Assistant to Rick Phelps
Executive Director, Memory People
leeannechames@gmail.com

The mission of the Alabama Lifespan Respite Resource Network (Alabama Respite) is to lighten the burden on caregivers, by making caregiver supports more readily available in Alabama.

A caregiver is anyone who provides care for a person with a disability or chronic illness.  There are an estimated 850,000 caregivers in the state of Alabama providing care for a loved one in their home.  Providing this care, while rewarding, can often be physically, mentally, and spiritually taxing.

If you have a faith based community that would like to investigate how to provide some type respite for caregivers, go to alabamarespite.org and find out all the many ways a group can help.  They will go the extra mile to enable you to provide this valuable service. Or call Anna Hines-Capron at (256) 859-4900 or e-mail to annastc@ucphuntsville.org for more information.

Ministry leaders and church representatives can also help Alabama Respite staff learn what types of assistance may be the most useful by completing a quick survey at this link https://www.surveymonkey.com/s/52SQF8F.

Available respite resources are also listed on the website.  Learn about this caring network and benefit from their expertise.  The link to the website is found at the top of the blog.

Since I have become a caregiver, I enjoy reading anything to do with Alzheimer’s Disease especially personal stories from people who have walked the journey alongside their loved one. The theme of my last three books addresses the approach taken when dealing with a person with dementia and how to engage them in meaningful activities to maintain qualify of life and make life manageable for the caregiver.

Virginia Bell and David Troxel are in their fourth printing of “The Best Friends Approach to Alzheimer’s Care”.   The Best Friends Approach is designed to create empathy from the carer point of view in order to understand how best to communicate with their loved one living with dementia.  They  have coined the term “knack” to refer in caregiving as a clever trick or stratagem or the ability and skill to do something easily.  Some individuals are simply born with knack; their personality and sensibility help them to be wonderful caregivers.  The Best Friends model can teach the abilities and skills of knack and along the way offer many clever tricks in the “dos and don’ts of Alzheimer’s care.  This is a worthwhile book and is only one of several written by these authors.

Hot off the press is Tom and Karen Brenner’s new book,” You Say Goodbye and We Say Hello: the Montessori Method for Positive Dementia Care”.   Incorporating songs from the Beatles as each chapter title, this easy read has a  clever appeal to the targeted baby boomers providing care.  Granted that dementia care is  an overwhelming task, they have broken down their personal experiences as a gerontologist and a Montessori teacher to  share their findings labeled “Guideposts” throughout their story.  They weave innovative and doable activities throughout the book and leave both professional and family caregivers with a renewed hope for creating a positive environment to deepen the connection with the people they love and care for.

Finally, having to wait longer than expected to receive this book in the mail, “Contented Dementia” traveled across the pond from England to find its way to me. Author  Oliver James lives in Oxfordshire and is trained as a clinical child psychologist and is a trustee of the Alzheimer’s charity, SPECAL.  An open letter from the inventor of the prescribed method in this book tells the reader if they have dementia and are reading the letter, not to worry about the future, appoint a person they trust as their advocate and have them read the book, then forget all about the diagnosis and get on with enjoying their life.  The rest of the book goes into great detail on how to use the person’s history to help create a life living in the present with memories from the past.  Penelope Garner developed the SPECAL Technique after caring for her own mother followed by years of observation and research with other clients. Get ready to do your homework as you read so that you will develop a customized world where your caree lives contently. For more information, go to Contented Dementia Trust.

All three of these books are similar.   Each stresses the importance of knowing the history, preferences and interests of someone with dementia and not to argue with but learn how to navigate away from unwanted negative behaviors associated with dementia.  Once these methods are perfected, consistency with all carers involved is required for optimum outcome.  All are worth reading.  We have a long way to go to get everyone on the same page with caregiving techniques.  May it begin with us – the ones who care the most.

Gulf Shores United Methodist Church, located at 1900 Gulf Shores Parkway, offers DayBreak, a ministry providing support and service for caregivers and their loved ones with Alzheimer’s Disease. DayBreak is held on Monday and Wednesday from 10 a.m. to 2 p.m. Cost is nominal and lunch is provided. For more information, contact Dolly Crewes at 251-968-3634 or Terry Fowinkle at 251-968-2377.  For more information, visit their website at Gulf Shores United Methodist Church.