Empathy and Understanding: The Need for Greater Compassion in Dementia Care
Greater empathy is crucial when caring for individuals with dementia. As dementia progresses, patients often experience changes in behavior, communication, and memory, which can lead to misunderstandings and frustration for both caregivers and society at large.
Behavioral specialist Lisa Skinner, who has spent more than three decades working with dementia patients, stresses that despite medical advancements, the human aspect of care—empathy—remains a vital but often overlooked component. Understanding the emotional and psychological needs of dementia patients can significantly improve their quality of life and the well-being of those around them.
A History of Misunderstanding
Throughout history, dementia patients have often been misunderstood, with their symptoms seen as signs of madness, aging, or even divine punishment. Before the 20th century, little was known about the brain and its diseases, so people with dementia were often marginalized. Families would isolate them, unsure how to respond to their erratic behaviors, while medical professionals could do little to help. Without the knowledge or tools to treat dementia, society often responded with fear and avoidance.
As science progressed, the medical community began to understand that dementia, including Alzheimer’s disease, is not a normal part of aging but rather a result of brain degeneration. This shift helped reduce some of the stigma associated with the condition. However, even with modern medical knowledge, many people still struggle to understand how to interact with and care for those with dementia.
The Persistent Challenge of Awareness
Medical advancements have certainly improved the diagnosis and management of dementia, but they have not necessarily increased public understanding of the condition. Skinner points out that while we now know more about the brain, dementia patients are still often treated as though they are less than human, simply because their ability to communicate has deteriorated. The disorientation and memory loss experienced by those with dementia can make them seem uncooperative or irrational to caregivers who are not trained to interpret their behavior.
For instance, when a dementia patient repeatedly asks the same question, it can be frustrating. But this behavior is a symptom of their condition, not a willful act. Empathy, as Lisa Skinner emphasizes, involves understanding that these behaviors are manifestations of the disease, not the patient’s personality. A lack of this understanding leads to frustration for both the patient and the caregiver.
The Importance of Empathy in Dementia Care
Empathy means putting oneself in the shoes of someone else and trying to feel what they might be feeling. For dementia patients, who are losing their grasp on the world around them, this empathy is essential. They may no longer remember their family members, their home, or even themselves, leading to fear and confusion. By understanding this emotional turmoil, caregivers can provide comfort rather than reacting with frustration or anger.
Empathy also helps caregivers see beyond the immediate symptoms of the disease and focus on the person behind them. Skinner often stresses that individuals with dementia are still people with feelings, fears, and desires, even if they can no longer express them as clearly as before. Recognizing this can transform the caregiving experience, making it more compassionate and effective.
Lisa Skinner’s Work in Building Empathy
Lisa Skinner has dedicated her career to teaching families and caregivers how to communicate better with dementia patients and develop empathy for their struggles. Her books, Truth, Lies & Alzheimer’s: Its Secret Faces and Not All Who Wander Need Be Lost, offer practical tools for understanding the complex behaviors associated with dementia. Skinner’s insights help caregivers navigate the emotional challenges of dementia care, emphasizing that these patients are not “gone” but are living in a different reality. By understanding and adapting to this reality, caregivers can reduce their own stress and improve the patient’s quality of life.
Skinner’s training programs and workshops also focus on improving communication between caregivers and dementia patients. This often involves teaching non-verbal communication techniques, such as using facial expressions and body language, which become more important as verbal abilities decline. These methods foster a connection with the patient that goes beyond words, tapping into emotional and psychological needs.
Why Empathy is Still Lacking
Despite the availability of these resources, Skinner acknowledges that there is still a significant gap in how society views dementia. Care for these patients is often task-oriented, focusing on basic needs like feeding and bathing, while emotional and psychological care takes a backseat. This approach can make patients feel isolated, misunderstood, and neglected.
In addition, there is a common misconception that dementia patients are no longer aware of their surroundings or their emotions. In reality, while their cognitive abilities decline, their emotional sensitivity often remains intact. Without empathy, caregivers may inadvertently contribute to feelings of isolation and depression in these patients, exacerbating their suffering.
Raising Awareness and Changing Attitudes
Raising awareness about the importance of empathy in dementia care is essential for changing attitudes. Skinner believes that public education campaigns, community programs, and caregiver training must include empathy as a core component of care. Medical treatments can help manage some symptoms, but they do not address the emotional needs of the patient. Only by combining medical care with empathetic human interaction can we provide dementia patients with the dignity and quality of life they deserve.
Families and caregivers who develop empathy for dementia patients often find the caregiving experience more rewarding. They are better able to manage the stress of caregiving and find moments of connection with their loved ones, even as the disease progresses. This sense of connection, however brief or subtle, can be a source of comfort for both the caregiver and the patient.
Increased empathy for dementia patients is more important than ever. As Lisa Skinner has shown through her work, empathy transforms the caregiving experience, improving both the caregiver’s and the patient’s well-being. While medical advancements have given us more tools to manage dementia, empathy remains the key to understanding and addressing the emotional and psychological needs of those affected by this devastating disease. With greater empathy, we can provide dementia patients with the dignity, compassion, and care they deserve.
