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!

THE CAREGIVING PRINCIPLE^®: PREPARING FOR THE NEXT PHASE OF THE JOURNEY

The Caregiving Principle®: Preparing for the Next Phase of the Journey

My mother, Elizabeth Boyd became a widow in 1987 and adjusted to living alone. My brothers and I, living in other cities, visited most holidays. We provided some level of caregiving to our mother for the last fourteen years of her life. Initially, this assistance involved minor household issues. As her Alzheimer’s disease progressed, she required more help from family and then from professional caregivers. I realized that the degree of caregiving required was related to the needs of the person and his or her capability. I named this fundamental concept The Caregiving Principle®. It states:

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

Your loved one has needs. In the early stage, your loved one will be able to meet most of their needs. But as the disease progresses and as they age, your loved one will be unable to take care of as many of their needs. These unfilled needs defines the role of the caregiver or caregivers. Initially my mother needed family oversight but then she began to need more, a social worker, then a social worker and a nurse, then assisted living, and then memory care.

The second component of The Caregiving Principle® is “Needs Filled by the Person.” These needs are filled based on the capability of the person, as defined by the cognitive capability (which declines as the disease progresses) and the physical ability (which declines with age and as the disease progresses). Caregivers need to prepare for the increase in required care. The increase in care could be additional help from family and friends, using professional caregiver services, or moving the loved one to a residential facility. Speak to relatives and friends who are or have cared for a loved one. Use the Alzheimer’s Association / AARP Community Resource Finder to identify adult day care, professional caregivers, residential facilities, and memory care in your area. Visit multiple types of residential facilities, multiple times, to identify a good fit for your loved one. Advance preparation allows for a more leisurely and a higher quality search. When my brothers and I decided that my mother could not live alone, my brother Mike had already visited an assisted living facility 6 months prior. This advance work made a very stressful time (moving Mom, selling a house, etc.), less stressful. 

The Caregiving Principle® encourages caregivers to prepare for the next phase of the journey. 

Spreading my Message of H.O.P.E.

I was honored to be a guest blogger for After Cloud. After Cloud is an innovative app in the ‘Life tech’ space, which helps individuals capture and share life moments in a closed group setting. After Cloud allows you to create a lasting digital legacy. It is making a real difference in people’s lives. Thank you Darren Evans, CEO and Founder for creating this app and allowing me to share my story “Hope in the Later Stages of Dementia.” Please read my blog post and visit Darren’s After Cloud website. 

I was equally honored to be a guest blogger for Nancy Jo Wilson’s blog, Six5mom. Nancy Jo wears many hats including homeschool mother, women’s ministry leader, and caregiver for her parents. She is also the author of “Lost in the System” a novel available for pre-order now. Her blog centers around faith and family. I share my story “Faith and Love: A Beautiful Combination for Our Alzheimer’s Journey.” Please read my blog post on Nancy Jo’s website.

AlzAuthors Mother’s Day Giveaway

In honor of Mother's Day, AlzAuthors is offering free Kindle copies of our first anthology Alzheimer's and Dementia Caregiving Stories: 58 Authors Share Their Inspiring Personal Experiences.

Within these pages you will be immersed in a world of writing about Alzheimer's and dementia. The editors of this anthology have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children's books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need.

This is a lovely gift for the caregivers in your life. So share away! We all know someone who needs comfort and support on their dementia journey. The paperback is also on sale and the anthology is available in audiobook, too. Order your copy of Alzheimer's and Dementia Caregiving Stories.

Honored to be part of AlzAuthors.

  

Firebird Book Award

H.O.P.E. for the Alzheimer’s Journey is an April 2021 Firebird Book Award Winner in multiple categories. The award is sponsored by Speak Up Talk Radio Network, an organization dedicated to provide handmade pillowcases, pillows, colorful totes, and more to women and children in long-term shelters. I am honored to be recognized by the Speak Up Talk Radio Network and overjoyed to support their mission. Please visit their website and see all of the Firebird Book Award winners.

Please Take Care of Yourself

SPREADING THE MESSAGE OF H.O.P.E.

BrainShape Podcast Interview 

I had the most enjoyable podcast interview with Dr. Andrea Wilkinson of BrainShape. The goal of BrainShape is to empower aging adults to become more mentally vibrant and physically engaged. Dr. Wilkinson made it easy for me to share tips, information, and my perspective with caregivers. We discussed hope and H.O.P.E, The Caregiving Principle®, racial disparities in health, and the grieving process. It was my first podcast but the 101st episode for BrainShape. You can listen to the BrainShape Podcast and then peruse the website and listen to some of the other 100 episodes. I was honored to spread my message of H.O.P.E. in Canada. 

Dementia Map – A Global Resource

I am thrilled that H.O.P.E. for the Alzheimer’s Journey is a part of Dementia Map. Dementia Map is a global resource for persons living with dementia and their care partners. The site includes a blog, guides, an events calendar, and a resource directory. You can visit the H.O.P.E. for the Alzheimer’s Journey page and find other products, services, and professionals in the Dementia Map Resource Directory.

Black History Month

February is Black History Month and the Great Lakes Black Authors Writers is celebrating with their annual conference on February 26-27. This virtual conference is free and the theme is “Our History is American History.” There is also an Author Expo that features an author each day in February. Please visit the website, register for the conference, and visit H.O.P.E. for the Alzheimer’s Journey at the 2021 Authors Expo. 

H.O.P.E. for the Alzheimer's Journey

H.O.P.E. for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead is available on my website for $12 with free U.S. shipping. Caregivers can benefit from the encouragement, advice, tips, and tools in H.O.P.E. for the Alzheimer’s Journey. The Caregiving Principle®, a novel approach to caregiving is introduced with examples. H.O.P.E. has helped many caregivers have a less stressful, more rewarding journey. H.O.P.E. for the Alzheimer's Journey is also available at bookstores and Amazon.com.

2021 Events

Currently, all of my 2021 engagements are private events but I am diligently working to add public events. Please help me spread my message of H.O.P.E. Contact me if you are interested in a seminar for your support group, church, conference, or workplace. Seminars include: 

• Alzheimer’s Disease Awareness
• This is my Caregiving Story 
• H.O.P.E. for the Caregiver (current/future caregivers)
• Balancing Caregiving and Career (current/future caregivers)
• The Caregiving Principle® (dementia caregivers)
• Alzheimer’s Disease for Home Healthcare workers (home healthcare workers)
• Seven Steps to Prepare for the Caregiving Journey (current/future caregivers)                   

Please visit my website for updates to my schedule.

Please Take Care of Yourself