SPREADING H.O.P.E AND THE CAREGIVING PRINCIPLE^®

AARP Virginia and Insight Memory Care Presentation

I am really excited to share my caregiving story with caregivers from Insight Memory Care. Preparing for this session brings back memories of how my brothers Ronald and Michael and I worked together as a team to provide the best care for our mother. Alzheimer’s caregiving was new to us. We learned along the way and had to adjust to our mother’s ever-changing needs as the disease progressed. I will discuss the role H (Help), O (Organization), P (Preparation), and E (Education) played to make our journey less stressful and more rewarding. I will also share tips, insights, and encouragement. Please join me by registering here.

Thank you AARP Virginia and Melissa Long from Insight Memory Care Center for giving me an opportunity to share my story. Also thank you for all that you do to provide support and education for those living with dementia and their caregivers in Virginia. 

Spreading The Caregiving Principle^® to the United Kingdom

I was honored to have a lively interview with Peter Hill, creator of The ‘D’ Word Podcast on UK Health Radio. I shared The Caregiving Principle^®, my H.O.P.E. acronym, and the lessons I learned with his UK listeners. The 'D' Word Podcast discusses everything carers and those living with dementia need to know. It is a great resource. You can listen to my interview and interviews with his wonderful guests here. 

AlzAuthors Custom Caregiver Collection

AlzAuthors has created a Custom Caregiver Collection consisting of 15 to 18 Alzheimer’s and dementia books in a beautiful tabletop bookshelf. I was honored that H.O.P.E. for the Alzheimer’s Journey was part of the first collection that went to The Echelon Senior Community lending library in my home state of Ohio. The books include memoirs, novels, caregiving guides, children’s books, and more from some of the 300 authors comprising AlzAuthors. Custom Caregiver Collections are suited for senior care communities, doctors’ offices, in-home care agencies, senior centers, memory cafes, and professional or personal libraries. Custom Caregiver Collections are available to order In Honor or In Memory of a loved one for $499 (incl. shipping within US). For more information and to place an order, click here. 

Event Photo Gallery

Clockwise from top:

• Goldey Beacom College Alzheimer’s Caregiver Symposium: Connecting and Engaging
• Canaan Baptist Church Enrichment Conference
• New Castle County Platinum Picnic Sock Hop                 
• Widener University Center for Social Work Education                                      

Upcoming Events

•  April 3, 2023, 1:00 to 2:30 pm EST. AARP Virginia and Insight Memory Care. “My Caregiving Journey.”  

• June 3, 2023, 10:15 to 11:45 am CST. Caring for People with Memory Loss Conference, University of MN School of Public Health. “The Caregiving Principle^®: For a Less Stressful, More Rewarding Journey.”

Schedule Your Event

I have a passion to help caregivers through support and education. I would love to speak to your group about: 

• Alzheimer’s Disease Awareness 
• The Caregiving Principle^®
• H.O.P.E. for the Caregiver 
• Balancing Caregiving and Career 
• Seven Steps to Prepare for the Caregiving Journey 

I can also develop a custom presentation for your organization. I can share my message of H.O.P.E. online and sometimes in-person. Please contact me to secure your date.

Please Take Care of Yourself

THE CAREGIVING PRINCIPLE^® RECEIVES A MAUDE’S AWARD

The Caregiving Principle® Receives a Maude’s Award

I attended an awesome virtual reception today. The Caregiving Principle^® was awarded a 2021 Maude’s Award. Maude’s Awards was created to enrich the quality of life for persons living with Alzheimer’s disease and related dementias and their care partners. It provides monetary awards to organizations and individuals for innovations excelling in one of 4 categories of care. Maude’s Awards was created in 2019 by Richard Ferry (Co-Founder of Korn-Ferry International) in honor of his beloved wife of 65 years. In 2013, Maude was diagnosed with dementia and she just recently passed away. 

During the reception, each of the 3 organizations and 5 individuals discussed their innovation and how it impacted persons with dementia and/or their care partners. It was so inspiring to be a part of this event. To see all the winners and the wide range of their contributions, visit https://maudesawards.org/2021-awardees/. 

The Caregiving Principle^® was recognized as an innovation that provides Support to Care Partners. This recognition will help me to spread my message of H.O.P.E. to more care partners. I developed The Caregiving Principle^® based on my experience as a care partner for my mother, Elizabeth Boyd. The benefits of The Caregiving Principle^®:

• It focuses on the needs of the person with dementia,
• It improves interactions with the person with dementia,
• It encourages care partners to maximize the ability of their loved one by seeking appropriate medical care for cognitive and physical issues,
• It encourages care partners to proactively prepare for the increase need for care, and
• It encourages care partners to take care of themselves. 

The Caregiving Principle^® is introduced in my book, H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead. 

H.O.P.E wins Readers’ Favorite Book Award

More great news! I am also excited that H.O.P.E. for the Alzheimer’s Journey won a 2021 Readers’ Favorite International Honorable Mention Book Award in the Non-Fiction – Health – Medical category! Here is what Readers’ Favorite says about H.O.P.E.: “In this book, readers will find a heart-to-heart conversation with readers looking for help in dealing with patients with Alzheimer’s. The use of the epistolary style in this book also makes its message intimate and more compelling.”

Schedule The Caregiving Principle® Workshop

Where has the year gone? I am beginning to develop my 2022 schedule. I would love to speak to your group about The Caregiving Principle^® or other topics including: 

• Alzheimer’s Disease Awareness 
• H.O.P.E. for the Caregiver 
• Balancing Caregiving and Career 
• Seven Steps to Prepare for the Caregiving Journey 
• Alzheimer’s Disease Awareness for Home Health Care Workers

Please contact me to secure your date.

Please Take Care of Yourself

THE CAREGIVING PRINCIPLE^®: MAXIMIZING THE CAPABILITY OF A LOVED ONE WITH DEMENTIA BENEFITS EVERYONE

Maximizing the Capability of a Loved One with Dementia Benefits Everyone

I was honored when Anthony Cirillo shared concepts from The Caregiving Principle^® in Sixty and Me. Mr. Cirillo is president of The Aging Experience and the founder of Sage Stream, the Senior Entertainment/Education Network.

I developed The Caregiving Principle^® as a caregiver for my mother during her 11-year journey. I realized that the amount of caregiving required was related to the needs of my mother and her ability to meet her needs. The Caregiving Principle^® states:

Needs of the Person – Needs Filled by the Person = Needs to Be Filled by the Caregiver(s).

The Caregiving Principle^® is a framework for the caregiver’s role and provides a deeper understanding of a person living with Alzheimer’s disease. Mr. Cirillo discusses how The Caregiving Principle^® can help you maximize the capability of a loved one by understanding areas that can impact ability. For example, minimizing anxiety in your loved one can help maximize their capability. I used techniques like “Live in the Patient’s World” from Joanne Koenig Coste to minimize my mother’s anxiety and keep her focused on the task at hand. Mr. Cirillo emphasizes the importance of having a loved one do as much as they can with minimal frustration. The benefits are an increase in your loved one’s self-esteem, potentially slowing their cognitive decline, and reduced caregiver workload. You can read the entire Sixty and Me article here.

Speak Up Talk Radio Network Interview

I had the most enjoyable interview with Pat Rullo on the Speak Up Talk Radio Network. “H.O.P.E. for the Alzheimer’s Journey” won their Firebird Book Award in April. We discussed many of the practical aspects of using The Caregiving Principle^® and I shared examples. Pat liked the personal touch of including our family emails in the book to convey our thoughts and decision-making process. The interview was a very nice way to highlight book award winners. You can listen to the interview on my Firebird Book Award page.

Pat and I continued our chat after the interview and I discovered she is also from Cleveland. This really is a small world.  

Approval of Aducanumab for Treatment of Alzheimer’s Disease

It is difficult caring for a person with Alzheimer’s. Families are thrust into the caregiving role and must watch and adjust to the gradual decline of their loved one. This caregiving journey can last 5, 10, or more years.

Now caregivers have an additional item added to their list. They have to decide if they should pursue the controversial Biogen drug Aducanumab (Aduhelm) to treat their loved one. This drug is controversial because the Food and Drug Administration (FDA) overruled its own scientific advisory committee and approved Aducanumab for Alzheimer’s treatment. The FDA “concluded that the benefits of Aduhelm for patients with Alzheimer’s disease outweighed the risks of the therapy.” Aducanumab is the first Alzheimer's therapy to gain federal approval in nearly 20 years.

Like many decisions faced by Alzheimer’s caregivers, this is a personal decision. It’s not a one size fits all. My H.O.P.E. acronym stresses the importance of E - Education for caregivers. Talk with your loved one’s physician and discuss with your circle of support. Below are a few articles that discuss various perspectives on the use of Aducanumab for Alzheimer’s treatment.

• “FDA’s Decision to Approve New Treatment for Alzheimer’s Disease,” Dr. Patrizia Cavazzoni, Director, FDA Center for Drug Evaluation and Research, June 7, 2021.
• “Aducanumab Approved for Treatment of Alzheimer’s Disease,” Alzheimer’s Association.
• “5 Things to Know About the New Alzheimer's Drug, Aducanumab,” AARP, Rachel Nania, June 15, 2021.
• “Q & A: Clinical Trial Investigators Respond to Aduhelm Approval,” Nicholas Chan, Being Patient, June 8, 2021.
• “Far Reaching Implications of the Aducanumab Debacle,” Dr. Dale Bredesen, Chief Science Officer – Brain.Health, Apollo Health, June 18, 2021.
• “The Drug That Could Break American Health Care,” Nicholas Bagley, Rachel Sachs, The Atlantic, June 11, 2021.

Alzheimer’s Association Ambassador

There are over 6 million people in America living with Alzheimer’s. In my state of Delaware, there are over 19,000 people with the disease. One-third of all seniors dies with Alzheimer’s or a related dementia. Alzheimer’s kills more than breast cancer and prostate cancer combined. Alzheimer’s disease is a growing epidemic for our nation and I want to be a part of the solution.

I was recently name Alzheimer’s Association Ambassador to my U.S. Senator Christopher Coons. Senator Coons understands the plight of caregivers. He is a strong supporter of legislation to ease the burden on caregivers and eradicate the disease. As an Ambassador, I will expand my work to help those impacted by Alzheimer’s. I will advocate for increased funding for research and support so that everyone with the disease can have access to effective pharmacological or lifestyle intervention treatment to reverse the course of this dreaded disease. I look forward to working with Senator Coons and his staff.

Please Share this Newsletter with Family and Friends

Please help me spread the message of H.O.P.E. by sharing this newsletter with family and friends caring for a loved one with Alzheimer’s.

Please Take Care of Yourself!