Dr Ethelle Lord is a professional Alzheimer’s coach. Her website is Remembering4you.com, and it is a leading support, information, training and coaching website for caregivers and providers of services for individuals with Alzheimer’s and other forms of dementia. Dr. Lord has a brilliant vision of creating a world-wide Alzheimer’s friendly healthcare workforce that will support not only care providers, but will help improve the quality of life for individuals living with Alzheimer’s. She is passionate about her work, and is sometimes considered controversial, but she forges ahead. Not just an educated authority, Dr. Lord has been there, in the trenches, as her husband’s care giver for 10 years. She has been a member of the International Coach Federation (ICF) for 15 years, and she has created a unique training program for professional Alzheimer’s coaches to support her vision.
Nadia: Dr. Lord. I’m thrilled to be talking to you today, and I know the readers are excited.
Ethelle: It is my pleasure and I am grateful for this opportunity, Nadia.
Nadia: Dr. Lord, can you tell us your personal story with regard to Alzheimer’s, which I understand is centered around your husband?
Ethelle: My story is not unique in any way to the many family caregivers in the field today that provide 24/7 care for their loved ones. In 1999 my husband had a triple by-pass and never was the same after his surgery. (I learned later that about 30% of bypass surgery results in permanent brain damage.) In January 2003 he was diagnosed with vascular dementia, an Alzheimer’s type that is somewhat treatable due to high-blood pressure, but not curable from the eventual outcome of Alzheimer’s. I provided in-home caregiving to my husband for about 10 years until the time he stopped walking and I was physically and emotionally exhausted. Once he entered long-term care, he followed the typical late stage of his Alzheimer’s and now barely speaks or feeds himself. I visit him a total of about 100 hours each month to observe the services he receives and his general daily living activities. Based on my personal experience of providing home care and then becoming his primary caregiver in long-term care (assisted by a large team of professional caregivers), I wanted to improve the quality of care, therefore the quality of life, for all individuals living with Alzheimer’s.
Nadia: Your company, is an important part of what you do. Can you give us some information about that?
Ethelle: Remembering 4 You is primarily a business-to-business organization working closely with hospitals, nursing centers, assisted living and such facilities, to ultimately create an Alzheimer’s friendly healthcare workforce everywhere in the world where care is being provided to individuals with Alzheimer’s and other forms of dementia. We also offer free tips and information to both family caregivers and professional caregivers. Remembering 4 You trains and certifies Alzheimer’s coaches throughout the world. These professionals are the hub to the Alzheimer’s friendly healthcare workforce wheel. They are responsible for a variety of functions from team formation to establishing/maintaining Alzheimer’s cafés for organizations which support the effort to bridge the gap between healthcare professionals and families.
Our main program is the Caregiver Partnership Agreement Program™ which is unique in the world of healthcare. To support this program we have training and certify Care Partners™, which includes doctors, nurses, certified nurse assistants and families, forming a large inter-professional healthcare team. The Care Partners’ mission is to work closely together in promoting better quality of care which leads to best quality of life. Providing a venue to complete the cycle of care and life for families is one of the greatest advantages of this team formation.
Nadia: You recently: presented the model to create an Alzheimer’s friendly healthcare workforce at the Alzheimer’s Centers of Excellence international conference in Tampa, Florida Sept. 12-15, 2012. I’d like to hear more about that.
Ethelle: What exactly does an administrator, who is managing by crisis do? When staff has a low morale and reports there is low job satisfaction? How do you deal with that complaint and resulting high turnover? Does this dissatisfaction transfer to the quality of care to residents, or even leap over to a higher level of responsibility in the organization thereby bypassing the facility’s management team? The entire healthcare industry is in a general crisis and suffering from crisis management. There is no roadmap to lead the administrator safely out of daily crisis situations with staff and other health care events in such a facility. Sometimes, breaking convention creates a better way (the title of my latest published article) but very fitting here. Remembering4You (R4Y) proposes a roadmap to improve the quality of care for individuals living with Alzheimer’s within an institutional Alzheimer’s care program. To ensure the best level of care R4Y recommends creating an Alzheimer’s Friendly Healthcare Workforce™ in your organization. Whether you are a hospital, nursing home, or assisting living facility that promotes an Alzheimer’s Friendly Healthcare Workforce™, such a program will promote your business as the best value and sustain it in the best possible way because it supports the following basic business values: accountability, subacute responsibility, value, training, monitoring, and rewards.
Benefits to the institution adopting the Alzheimer’s Friendly Healthcare Workforce™ model leads to an improved delivery system to better meet the needs of individuals living with Alzheimer’s and other forms of dementia and their family members. A summary of the benefits may include: increased job satisfaction, lower sick leave and burnout, reduced unnecessary emergency room visits and hospitalization, a public profile that is attractive to those seeking long-term care services, measurable increase in the quality of life and quality of care for residents and their family members, an Alzheimer’s trained workforce from doctors to CNAs, and a certified Institutional Alzheimer’s Coach (IAC) to manage and maintain your Caregiver Partnership Agreement Program™ and issues concerning residents who are living with Alzheimer’s or another form of dementia and their family members.
Nadia: What are the biggest challenges facing families of Alzheimer’s patients and also within the facilities that provide care.
Ethelle: I would say that the biggest challenges facing families who have a loved one living with Alzheimer’s is the chronic caregiver fatigue timeline http://remembering4you.com/pdf/03CaregiverFatigueTimeline.pdf and the 4 stages of family caregiving http://remembering4you.com/stages-of-alzheimers-stages-of-caregivers/. None of these are inevitable and should be part of any family caregiver training/support.
Professional caregiving is suffering from burnout and management is often unaware of the 4 stages of professional caregiving Remembering4you.com/stages-of-caregiving which unnecessarily cost them millions of dollars in lost productivity and needless turnover in their workforce. Poor communication and communication breakdown between professional caregivers and families continues to be the number one plague in long-term care whether it is hospitals, nursing center, assisted living, etc. This lack of communication skills leads to quality of care and devastating public relations for their customers.
Nadia: How much is known about heredity and/or predisposition to the disease as opposed to lifestyle etc.
Ethelle: Research is always ongoing and I am grateful for all the scientists out there who have a genuine interest in helping find causes and cures. According to Web MD, researchers “do not know the exact cause of Alzheimer's disease, but it is most likely due to a combination of a variety of genetic and other factors. Genetic research is concentrating on the role of heredity—the transmission of qualities and illnesses from parents to children— in determining risk for, and development of, Alzheimer's…” Research often refers to Alzheimer’s as a disease but at Remembering 4 You we consider Alzheimer’s a condition an individual lives with instead of a disease. Because there is no clear cause(s) for Alzheimer’s and therefore no cure(s) which is the trademark of a disease, it remains a condition that challenges the life of everyone living with Alzheimer’s and their families. In the case of my husband who was diagnosed with vascular dementia of Alzheimer’s type, and early onset due to his bypass surgery, it is considered hereditary on his father’s side. This is rare when compared with all the other diagnoses of Alzheimer’s type.
Lifestyle has to be considered as extremely important. For example, I now give my husband Pycnogenol® (lifespaninternational.com/R4Y) daily in divided doses. This is the single most powerful antioxidant available on the market that I am aware of today. It has resulted in his ability to be more alert and awake during the day. He sleeps a full night even in his advance stage of his Alzheimer’s. At the international conference I attended in Florida in September and speaking to one of the scientists who presented, I discovered that taking an antioxidant, such as Pycnogenol®, is the single best preventative measure. In the case of my husband, he could have been taking this way before his diagnosis and perhaps prevented early onset, even with his bypass surgery. Free radicals do not care what organ they attack (heart, brain, kidneys, etc.), and therefore a powerful antioxidant protects all organs. Food is also important because of all the preservatives added to food today and the way fast food has become a way of life for a lot of individuals. Organic and fresh/homemade is still the best approach to eating. Food alone will not prevent a variety of Alzheimer’s types, it just is an insurance that may just be golden.
Nadia: We know there is no known cure. What treatments are available currently for patients in the early stages?
Ethelle: There are a few drugs on the market normally prescribed in the early stage of Alzheimer’s. They are effective only for a year or two, but believed to help with preventing anxiety/aggression in the later stages of Alzheimer’s. My husband continues to take these drugs to this day. However there are pros and cons about taking this medication, with limited benefits, at the onset of Alzheimer’s and continuing ingesting them later on. It is difficult to know what to do when your heart tells you to provide/protect your loved one, and researchers still do not have anything on the market to replace these two drugs (Namenda and Aricept). Research is always ongoing to find more suitable drugs to slow down Alzheimer’s, and hopefully even find a cure. According to Dr. Whitehouse who challenges the conventional wisdom and assumptions about Alzheimer’s, posited Alzheimer’s may not even be a disease because there is really no cure in sight for this condition that knows no national boundaries (Whitehouse, 2008).
Nadia: Can we talk a bit about the stages of Alzheimer’s and the progression of the disease however rapid or slow it may be.
Ethelle: Alzheimer’s, dependent on the type, educational background and age of onset, can last 20+ years. Abilities vary according to each individual but according to the Alzheimer’s Association, there are 7 basic stages to Alzheimer’s as follows:
Stage 1: No impairment – can be hidden from the individual and loved ones for a decade or more;
Stage 2: Very mild decline – forgetfulness becomes more obvious;
Stage 3: Mild decline – reasoning and judgment decline is obvious to self and others;
Stage 4: Moderate decline – affects most aspects of daily living;
Stage 5: Moderately severe decline – individual with Alzheimer’s needs close supervision;
Stage 6: Severe decline – individual requires high level of personal care in all aspects of daily living;
Nadia: Dr., since my audience is largely baby boomers, which is the 50-65 age group, do you have any comments specifically for them? What kinds of things should they be watching for, in their parents and do they have to worry themselves–yet?
Stage 7: Very severe decline – language is gone, ability to feed themselves, etc.;
Ethelle: Everybody is afraid of forgetting important dates, events and names. Automatically they wonder if they have the beginning of Alzheimer’s. Life stressors are the greater cause of forgetfulness. In order to begin to worry about having Alzheimer’s, an individual would have to experience regular forgetfulness and experience feeling troubled with ordinary tasks they feel they used to perform easily, now it seems to be impossible for them (i.e., calculating figures, destination for a trip, etc.).
The second things would be whether the individual is becoming more and more irrational and displaying extreme poor judgment. Whether they tend to get lost or show signs of depression (i.e., want to sleep most of the day, prefer not to participate in planning events they used to love to do, etc.). Keep a list of the changes you notice, and simply make an appointment with their regular family doctor to explore what, if anything, may be medically going on for that individual. It is preferable the doctor is familiar with diagnosing Alzheimer’s and sensitive at approaching your loved one when doing his/her evaluation.
Finally, watch the dietary intake and supplement intake. Stay active on a daily basis in order to keep physically fit. Also stay mentally fit by getting involved, reading, meditating, and whatever activities of the mind you feel most comfortable pursuing. Although none of these recommendations have proven to prevent Alzheimer’s, they all have proven to extend the quality of life for all of us.
Nadia: Ethelle, before we go, is there a question I didn’t ask you that you want to be sure gets included? Something you would like to add?
Ethelle: Yes, I'd like to tell readers who want to become involved and make a difference to support/help individuals living with Alzheimer’s. Please visit us at www.remembering4you.com to consider shifting from a medical model to a care model for all your Alzheimer’s patients (hospitals) or resident (nursing center, assisted living, ect.). The best way to do this is to introduce the Caregiver Partnership Agreement Program™ in your organization or facility. Consider an Alzheimer’s friendly healthcare workforce to replace what you have now and invite family caregivers to take an active part in the actual continue hands-on care of their loved ones.
Although the field of Alzheimer’s coaching is just now reaching the marketplace all over the world, it is the hub of the healthcare wheel in Alzheimer’s care today.
Nadia: Ethelle, thank you for sharing this important information with us today. I deeply appreciate your participation and the valuable work you are doing.
References used above:
Alzheimer’s Association (n.d.). Retrieved November 30, 2012 from Alz.org/alzheimers_disease_stages_of_alzheimers.asp.
Web MD: Webmd.com/alzheimers/guide/alzheimers-genetic
Whitehouse, P. J. & George, D. (2008). The Myth of Alzheimer’s: What you aren’t told about today’s most dreaded diagnosis. Pub.: Martin’s Press, New York, NY.
About Nadia Giordana
Nadia Giordana, like many baby boomers, wasn't willing to accept the status quo. At retirement, instead of perfecting her golf swing, she set about tackling two major issues in her life. First, she adopted a healthier lifestyle, lost 88 pounds, and wrote an award-winning book about her journey. Then she conquered a lifelong fear of public speaking. Now she focuses her energies on seeking out and interviewing talented boomers with similar success stories. In her words, “My goal is to help other baby boomers find the inspiration they need to rediscover sleeping dreams, because ‘some day’ is here, and it's time for us to do the things we always said we were going to do.” Nadia can be reached at firstname.lastname@example.org, and at Embodyyourvision.com .