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.