Research components included videotaping of consented dyads, caregiver and care-recipient, which became the genesis of training DVDs used in the program curricula. It was professor Levy-Storms' notion that when training nursing and healthcare professional staff, seeing peer groups in non-scripted encounters enhanced understanding and learning during training. This has been substantiated by their research.
Their ongoing collaboration has resulted in three-program curricula of training programs for families and healthcare professionals and organizations across the country. There is a fourth curriculum in development.
Collection of data of non-scripted videotaped dyads in communication opportunities.
Positive examples from the videotapes of consented subjects embedded in the training materials for peer group identification.
Dissemination of these training programs to healthcare professionals and organizations, families and caregivers.
Training that is experiential, less "class time" and more "let's try it out time," to ensure learning and opportunities to develop new and/or improve skill with communication.
Utilization of the communication strategies bring laughter, joy and meaning to training participants – come join us for a workshop and experience the enjoyment for yourself!
Ultimately, the co-founders of Connected Hearts wish to raise public awareness and convince congress to support change in public policy that more specific and positive training in effective communication techniques is needed for everyone who engages with our elderly to promote quality and wellness.
Susan Kohler is a licensed and certified Speech-Language Pathologist, currently working in the southern California area. She graduated from Arizona State University with an M.S. in Communication Disorders. She completed a Clinical Fellowship Year at the Phoenix Day School for the Deaf. She has years of experience in different clinical settings, however, the main focus of her practice is working with the elderly. Susan has worked "in the trenches" with the elderly population in hospitals, skilled nursing facilities, home and Adult Day Health Care settings for over 25 years. She has worked as a Director of Clinical Programs and Rehabilitation Services Coordinator, in addition to duties as a Speech Pathologist. Susan recently completed a training video promoting the importance of communication with daily caregiving, which previews the techniques of her first communication strategy. Her experience with Alzheimer's and dementia has gained her recognition as a dementia specialist with lecturing and training on best communication practices with this population. Employing the evidenced-based programs she has developed with Lenė Levy-Storms, Susan has a unique approach to training, as professional and family caregivers participate in experiential training which has proven to be effective with daily dementia care.
Susan is also a professional actress and singer/songwriter (visit susankohler.com) and attributes that training to enhancing her skills as a therapist working with the frail elderly. She is a member of the SAG-AFTRA, and Actors' Equity with credits in television, film, stage and recording. Often, when working at one of her contracted facilities, she will bring her fellow artist friends to perform, or simply just talk to the patients and residents of the facility. The responses are always rewarding – what seem to be withdrawn, lifeless individuals – emerge into smiling, laughing, singing and interactive human beings. These experiences helped Susan realize that the "human connection" was vital to stimulating positive experiences of communication, sharing, bonding, building self-esteem and wellness in persons that many believe cannot understand or express their interests.
With much encouragement from family, friends, and colleagues, Susan began writing her book, How to Communicate with Alzheimer's. It was one of the first books on the subject of communication practices and it was published in 2004. It is a practical guide and workbook for families that shows how to connect with loved ones who have Alzheimer's, dementia, confusion and memory loss. It is a book that comes from not only from the heart of its author, but the hearts of the people who have dementia. In the acknowledgements, Susan thanks all these individuals with whom she has worked with – for helping her to appreciate life.
Susan was among 60+ national dementia care experts from across the country who came together in Washington DC to form a consensus white paper to clearly describe and detail person-centered dementia care. This paper, "Dementia Care: The Quality Chasm", was presented to congress and published in January 2013.
Lené Levy-Storms' core research concerns the quality of communication between long-term care providers and older adults with dementia, including their family caregivers. In 2003, Dr. Levy-Storms received a career development award from the National Institute on Aging titled, "Therapeutic Communication during Nursing Home Care." In this five year study, she focused on how to conceptualize, measure, and improve communication between direct care staff and frail, older residents with dementia during nursing home care. In 2005, the National Alzheimer's Association and the Hartford Foundation awarded Dr. Levy-Storms funds to test her communication training intervention. In 2008, the American Medical Directors Association enabled Dr. Levy-Storms to expand her intervention to family caregivers of nursing home residents with a quality improvement award. In 2010, Dr. Levy-Storms became an Atlantic Philanthropy-funded Health and Aging Policy Fellow during which she explored federal and state policies on direct care staff training in long-term care. In a new collaborative study, funded by the Archstone Foundation in 2013, she is exploring the feasibility of broadening her communication intervention to simultaneously train both direct care staff as well as family caregivers of nursing home residents with dementia to communicate well with one another as well as residents with dementia.
Dr. Levy-Storms has B.S. degree in psychology from UC Davis, a MPH in biostatistics and a PhD in public health. From 1998-2000, she was an assistant professor in the Department of Health Promotion and Gerontology and a fellow of the Sealy Center on Aging at the University of Texas Medical Branch in Galveston, TX. In 2000, she joined the UCLA Department of Medicine, Division of Geriatrics as an assistant professor. At that time, she also became an associate director of the UCLA/Borun Center for Gerontological Research, an appointment which she continues to hold. The Borun Center focuses on applied research to improve the quality of life of older adults in long-term care settings. She now holds a joint appointment with Medicine and Social Welfare.
All of us at Connected Hearts are committed to raising public awareness that the communication needs of persons living with dementia must be addressed by professionals and families involved in their care. The foundation of this care is to make an emotional connection upon which quality of life can ensue for both caregiver and care-recipient. With the demise of quality interactions generated by the world's obsession with cell phones and computers, the face-to-face interactions needed to create an emotional connection are the hallmark of our Connected Hearts programs.
It is our vision to provide the experiential training from our unique package to national and ultimately international organizations. Another aspect of training is to provide families and communities sponsored workshops. All of these programs will be sheltered in a Center For Therapeutic Communication, a center dedicated to providing access to programs, professional contacts, reports of ongoing program development and research.
Alzheimer's and other forms of dementia have no cure. Medical and behavioral efforts cannot prevent it — only lower the risk of developing such diseases. Individuals who develop Alzheimer's or other dementias must live with it as must their family, friends, and other caregivers.
Fundamentally, living with such diseases alters the way an individual interacts with persons who do not have the disease. The individual with a dementia-related disease may become agitated, confused and scared that no one seems to understand their expressions of unmet needs. Persons interacting with him/her, including a caregiver, may try to manage the behaviors, but lose sight of the person and a "disconnect" ensues. A lack of cooperation combined with unmet needs results in poor quality of care and diminished quality of life.
Not including other forms of dementia, about five million individuals have Alzheimer's disease and at least another five million family members and/or paid caregivers try to provide for their needs. While individuals may have the disease and others may try to take care of them, society has to address this burgeoning problem in a manner that helps ameliorate these care challenges at all levels: in the home and in both acute and long-term care health contexts.
The societal problem may be considered as an ongoing challenge to interact and to connect with individuals living with Alzheimer's and other forms of dementia. A behavioral and communication approach to defining this problem offers a short-term solution to such everyday challenges: better and more communication training for caregivers.
Federal policies exist to support family and friends who provide care to an individual living with Alzheimer's disease as do federal and state policies to mandate minimum training standards for paid caregivers in the community and in long-term care institutions. No policies exist for either of these groups of caregivers to mandate training in communication techniques for providing care to an individual living with Alzheimer's disease.
In the absence of such training mandates, what else is feasible? Giving such individuals psychotropic medications? Continued relieving of caregiver burden? Institutionalization?
Psychotropic medications are not effective or safe, caregivers are hard to reach, and no one wants to enter a long-term care institution to live there. However, training in communication techniques is relatively low cost, highly effective for both the individual living with Alzheimer's disease as well as their caregivers and transcends location — whether it be in homes or in institutional settings.
With effective communication training, cooperation, quality care, quality of life — emotional connections — are all possible. Connected Hearts defines the most important challenge as one of communication, and it offers a variety of training approaches to achieve all of these outcomes.
Unfortunately, there is a void of policies that define the problem as behavioral and, instead, focus on developing a cure, the use of medication, and the risk for institutionalization. We need policies that explicitly put "front and center" the problem of communicating and connecting with individuals living with Alzheimer's disease.
What are the unanswered questions related to training caregivers for individuals living with Alzheimer's disease? Such questions would include the necessary scope of training, the most effective pedagogical teaching methods, and the most cost-effective approaches.
Since 2001, with funding from UCLA, the National Institute on Aging (NIA), the Hartford Foundation, the National Alzheimer's Association, the American Medical Directors' Association, and the Archstone Foundation, Lené Levy-Storms has been investigating the answers to these questions. Over the past decade and half, she and Susan Kohler have collaboratively established a scope of training and an effective pedagogical approach to training paid and unpaid family and/or friend caregivers. Currently, they, along with Julie Robison, are exploring how to "connect" these caregivers not only with the individuals living with Alzheimer's disease but also with each other! One could say, "it takes a village," and in this case the "village" includes a broadening range of caregivers that have to interact well — communicate and connect — in order to optimize the care for individuals living with Alzheimer's disease.
Research efforts have evolved from identifying the problem from a behavioral perspective, developing a communication training intervention based on theory and clinical practice, operationalizing evaluation measures, testing the effects of the communication training intervention on a variety of caregivers and individuals living with Alzheimer's disease, and exploring the feasibility of the intervention in primarily institutional long-term care settings.
Next steps include further enhancing the intervention for different target audiences, using technology to enhance measures of "emotional connectedness," conducting randomized controlled trials comparing the intervention with usual training and care in different institutional long-term care settings, developing and testing approaches to sustainability, and conducting market analyses to explore promising dissemination routes.