No Roadmap for Dementia Caregiving

When we lose someone close to us, we also lose a part of ourselves. This is true for family caregivers of people living with dementia who bear witness to their loved one's decline. Often, they must do this without a roadmap to assist their family member. In this video, three caregivers share their personal and authentic narratives, being honest and truthful about the struggles of caring for a loved one with dementia without the necessary guidance in the journey.

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Tariq Mines

The NCCDP Helps Dementia Caregivers Get Educated

Owner and founder of the National Council of Certified Dementia Practitioners (NCCDP), Lynn Biot-Gordon, has wanted to become involved in dementia care for as long as she can remember. 

“I had an interest early on because I was exposed early on to dementia,” Biot-Gordon said. 

From 3-to-5-years of age, Biot-Gordon’s grandmother lived with her and her mother. Her grandmother experienced dementia during that time, and Biot-Gordon’s mother was her primary caregiver. 

This family caregiving arrangement is not unusual. In fact, according to A Place For Mom, more than 11 million Americans provide care for loved ones with dementia. 

Biot-Gordon’s experience, paired with her degrees in social work and psychology, sparked her idea to create the NCCDP in 2001. 

According to the organization’s website, “The Council was formed to promote global standards of excellence in dementia and Alzheimer's Disease education to professionals (who support the healthcare industry), caregivers, front line staff, First Responders and correctional personnel who provide services to dementia clients.”

Education for dementia care partners is important considering that statistics from the World Health Organization show that worldwide, around 55 million people have dementia and this number is expected to rise to 78 million in 2030 and 139 million in 2050.

Because dementia cases continue to rise, the NCCDP is looking to ensure the best care and support for dementia patients. 

The NCCDP came about when Biot-Gordon and her colleague would teach and educate care providers on healthcare issues pertaining to the elderly, like cultural diversity and cultural competence in healthcare, sexuality and aging, depression and the elderly, and more. People working at those facilities would ask them if they could educate others about dementia. 

“What we started doing was researching it and developing modules that turned into a complete, comprehensive curriculum,” Biot-Gordon said. The curriculum was launched when the NCCDP officially launched in 2001. Biot-Gordon and her colleague started presenting it and thought that they could take it nationwide, but they soon realized they needed more than just two people. Their solution was to develop a “train the trainer” program and roll it out across the country. 

According to Tammy Jurkins, a Certified Alzheimer’s Disease Dementia Care Trainer (CADDCT), the curriculum consists of educating people on how to communicate with someone who has dementia and how to provide care for the patients, such as bathing, dressing and toileting. It also consists of teaching caregivers certain activities that can be practiced with the person living with dementia to keep them active and function at their highest potential.  

To participate in the curriculum, which could be held either in person or via Zoom, a person must fill out an application. The application is confirming one’s job status and that this person will continue to use this education in their field. The course is taught by a certified dementia trainer, whose certification came from the NCCDP, and once the person completes the course, he or she would be considered a Certified Dementia Practitioner (CDP). 

“To get the [CDP] certification, a group will sit with the trainer for eight to 10 hours to become certified. For becoming a trainer, it’s a 12-16 hour process,” Biot-Gordon said. 

Jonna Phelps, another CADDCT, described that to become a trainer, one must take the initial certification course and fill out an application to become a trainer that shows you completed that course. The form also asks applicants to cross off boxes that show that they are dedicated to the education of others and work in a place that will allow them to spread that education. 

“The goal is to make sure that there is a general understanding of all the concepts and information,” Phelps said. “There needs to be a passion for teaching and engaging. There are qualifications and education requirements that need to be maintained.” 

Phelps explained that the trainer curriculum is research-based, evidence-based and information-based. It consists of the regular curriculum for participants but adds in ways to teach the information to those who signed up for the course. The program also explains the business aspect of it, as in who would benefit from the classes “because we don’t want to market to just anybody,” Jurkins said. ”We want to market to people who are actually going to use the information.”  

The “train the trainer” program allows the NCCDP to take their content and scale it by having the certified trainers deliver it. 

One key issue surrounding dementia is the lack of a dementia care - and dementia caregiving - roadmap. The NCCDP’s certification program serves as a roadmap of sorts by educating CDP participants on the next steps in caring for a person living with dementia.

After receiving a dementia diagnosis, Biot-Gordon recommends that the patient or caregiver try to get as much information about the particular diagnosis received, start educating themselves about whatever disease is causing their dementia or loved one’s dementia, start doing as much research as they can about medications that might be an option for them and most importantly, live their best life. 

“If they’re still able to work, keep working,” Biot-Gordon said. “Be hopeful that new medication or new treatment will come about that could stunt the process happening to them. Make plans for the future and get your affairs in order. Getting that diagnosis is the time to start planning because most of us don’t think about planning until getting a diagnosis like that.” 

The CDP certification process is designed for front line staff, meaning everyone who interacts with a person living with dementia, like health care professionals, first responders and elder care attorneys. That could also consist of nurses aides, personal care attendants, nurses of all levels, the activity and recreation department, the social services department and so on. 

“If you’re going to work in elder care, where something like dementia is so prevalent, you need to be very familiar with the symptomatology of dementia and understand that the root of it is that it comes from different diseases,” Biot-Gordon said. “You need to understand how you can be the most effective caregiver possible. One of the ways to do that is to make sure that you have committed yourself to being the most educated and qualified person for the job. To become that, the best thing to do is to get certified.”

To become certified as a CDP, one must take the eight-hour foundation class and it has to be presented by one of the certified trainers, someone who has gone through the program, knows the curriculum and has been trained on how to teach it. 

The NCCDP has trainers who teach in colleges over a 30-to 40-hour time span by breaking down each module with a review of handouts, class discussions, tests, and more. The trainer can map out the workload as the trainer sees fit. The trainers also teach in healthcare facilities. 

“This [curriculum] was always designed to be live and in person because that’s how we provide dementia care,” Biot-Gordon said. “It’s something that you have to do in person. It’s about the human touch and the human experience.” 

Because of the pandemic, the NCCDP had to go virtual. They are planning to be virtual until June 2022 to be safe and cautious. However, trainers are not limited to a virtual modality if they prefer to teach in person and are able to do that. 

If someone is training in their own facility, they have time to break down the sessions. Some will do it all in one shot. The NCCDP usually does it all in one shot from 8 a.m. to 5 p.m. for the participant to become certified. 

The CDP certification will last someone two years and this person would have to meet other requirements as well. No one can become certified just because they passed the curriculum. They have to be certified or licensed already in their healthcare field, with a minimum of three years experience with the dementia population. They have to be able to show that they have 10 hours minimum of dementia care after that two year period to renew the certification. 

Other professions such as audiologists, speech pathologists and physical therapists are finding that they could benefit from dementia certification as well. The NCCDP has seen their audience grow because the aging patient population is growing, too. 

Most recently, the NCCDP has seen an increase in interest in their program from first responders, like firefighters, EMT’s and police officers. 

“They need to know how to interact so they don’t abuse the person,” Biot-Gordon said. “They’ll treat someone in a different way if they think they are under the influence of something versus knowing that they are cognitively impaired, which is why their training and understanding of dementia is so important.” 

Despite being a successful organization now, the NCCDP faced hardships as they first started out. 

“It was a slow process because it was a new concept to have a certification in dementia care,” Biot-Gordon said. “We did have skeptics and organizations that challenged us and questioned us. It took the first five-to-seven years to build relationships with organizations and facilities and something like large nursing home chains.”

Once they built those relationships, however, the facilities experienced greater staff productivity, better understanding and sensitivity of patients’ needs, and an increase in the quality of care for the client, Biot-Gordon reported. 

Despite the cases of dementia growing at a rapid rate, there is currently no cure and few  medications out there to help dementia patients. The Alzheimer’s Association reports that dementia is the only top 10 cause of death in the United States that cannot be prevented or cured.  Biot-Gordon believes that her organization and its services are a step in the right direction. 

Although dementia is as prevalent as it is, Biot-Gordon is aware that it doesn’t get talked about enough. 

“The reason why a lot of people don’t talk about it is because they think that it doesn’t affect them. They think it doesn't impact them yet,” Biot-Gordon said. “A lot of people think that it’s something you don’t worry about until you get older, even though it can attack the brain as young as the 30’s. Because people have been so misinformed through the years, they don’t understand because they don’t have that knowledge and education.”

Individuals interested in becoming CDP’s through the NCCDP will pay $195 for the eight-hour class. Sometimes the NCCDP is able to offer the class at less than that because of donations from organizations or donors. Other times, the class will be offered for free if there is a certain circumstance or if they have a specific contract agreement with an organization or private group. 

The NCCDP has over 2,000 trainers nationwide and some internationally, along with over 100,000 certified members. Their goal has been to provide education across the country for multiple dates every month of the year. 

If a trainer is teaching and presenting the curriculum in their own building where they work, there would be no charge to take the class if an employee there is interested. Trainers can also teach and present independently and they can charge whatever price they want. However, most don’t price it more than $195 because the class can’t be too expensive. The NCCDP has a national calendar and if people see that it’s being offered for less somewhere else with a different trainer, that’s where they’ll go. 

The curriculum is revised every two years to stay up-to-date as information will change from time to time.

“If you’re going to get certified, do what it says it means,” Biot-Gordon said. “It means you’ve committed to your dementia education and dementia skills. Information changes so it’s important to stay relevant.” 

“It’s been an interesting journey,” Biot-Gordon said, reflecting on the 20-year growth of the NCCDP. “We’re glad we did it. We always felt it was meaningful and purposeful because working in facilities ourselves, we realized dementia education was spotty.”

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Angelina Halas

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Juliet Jacob

Lack of a Dementia Roadmap

In this audio story, you will hear from members of the National Council of Certified Dementia Practitioners. Tammy Jurkins and Jonna Phelps are Certified Alzheimer's Disease Dementia Care Trainers (CADDCT's). We asked them to share their experiences helping others prepare to become dementia caregivers for their loved ones. This audio story also features comments from estate planning and elder care attorney Larisa Gilbert.

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Mike Firuta

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