Alzheimer's Disease is a progressive and debilitating disease that often leads to a person's inability to understand and be aware of conscious existence. As a disease it is incurable and due to its inevitable progression, leads to one of the most frightening human conditions that exists. 

However, Alzheimer's disease and many associated dementias are more than just progressive neurological disorders that disassemble the normal neurological structure of the cerebral cortex.  It leads to the extirpation of the social soul, which behavioral scientists have often referred to as the self. 

Although many individuals look at Alzheimer's disease as a neuropathological condition that is ultimately and exclusively the purview of biological substrates that go awry in the human brain, the profundity of the condition is truly in the loss to the sense of self. This needs to be examined in further detail since the implications for understanding and caring for those that suffer from Alzheimer's disease in long-term care entails a greater recognition not only of the neurorcognitive pathology, but also the concomitant social debilitation.    

We are not born with a sense of self;¹ it emerges with our overall development.  Individuals are born as biological entities with some primitive biological reflexes, but at birth we have no understanding of what we are and how we are separate and unique entities from our environment.^1,2 At birth, we are living and breathing biological entities, but with no self we fail to hold many of the qualities that we come to equate with being human.

As we develop our sense of self through social interaction, we come to develop into social beings, or as Elliot Aronson has come to refer to humans as "social animals."³ Possibly the most important part of our sense of self is the concept of reflexivity. This shapes our mind to view ourselves as an object to itself. As conscious human beings, our ability to see ourselves as others would is critical. 

For instance, we develop important emotions such as pride, envy and embarrassment because we are able to see ourselves as an object, viewing ourselves as others come to see us. However, as those long-term care personnel who have worked with individuals that suffer from Alzheimer's know, as the disease progresses, many social skills rapidly deteriorate. 

People suffering from Alzheimer's fail to view themselves as objects. Social behavior is often compromised, such as undressing in public or taking their teeth out and placing them on the dining room table while others are eating. They lose their ability for shame and embarrassment, higher level social emotions that requires the reflexivity of the self.  These emotions develop when we are able to see ourselves as others do, and they allow most people to understand what is appropriate or inappropriate behavior in any given situation. 

With a sense of self, it allows us to understand what others expect of us and how others will view us if we fail to live up to the social norms of particular situations. The person with Alzheimer's disease, whose self is slowly dying, is unable to understand these implications. 

It can be very frustrating for caregivers and family members to watch, since most cannot comprehend why the person with Alzheimer's is unable to understand these simple social graces that most of us take for granted. They fail to realize that the disease is more than just biological, and that the person's sense of self is slowly degenerating as well.            

No society or human civilization could exist with individuals doing whatever they instinctively want to do. Because we have a sense of self and obtain the reflexivity of a mature sense of self, we typically can control our own behavior. However, individuals with Alzheimer's disease and other forms of dementia often regress because of that loss of self awareness. The self is dying along with the neurological tissue. 

Caregivers are challenged to explain this socially compromised behavior to those who suffer from the disease. In the earlier stages of Alzheimer's residents demonstrate some awareness of their social transgressions. However, in the later stages, as caregivers attempt to explain their behavior, residents often will stare blankly, similar to very young children being reprimanded for inappropriate behavior.

Neither are able to understand the consequences of their actions due to not having the appropriate requirements for a truly social self. In the child's case, their self will continue to develop and they will eventually be able to understand the social significance of their behavior. However, the person with Alzheimer's will never be able to understand the ramifications of their behavior and will only continue to spiral downward. For the child, the self will mature and grow; for the person will Alzheimer's, the self will continue to regress and die. Alzheimer's disease is more than physical, robbing the person of the essence of their humanity.     

With Alzheimer's disease not only do pathological changes occur in the higher cortical levels of the brain, the destruction of cortical levels also breaks down one's sense of self.  Although the elements of the self are probably not located in any single aspect of the brain, the dorsal lateral and dorsal medial prefrontal cortex and the orbital prefrontal cortex, along with the anterior cingulated, probably play very important roles.^4,5,6 

The upper brain regions are the ones that are directly influenced by the pathophysiological changes that take place as the disease ravages the person's brain and with it their social soul. The ability for self-awareness and reflexivity becomes increasingly impaired as cortical tissues of the brain are further decimated by the disease.  Many of the higher areas of the brain responsible for reasoning and understanding are also responsible for making sense of the person's social world and their respective position in the social world.            

Even those without a neurological disease like Alzheimer's will lose their social skills and experience a regression in their sense of self if they fail to interact and practice social skills daily. Therefore, those with Alzheimer's disease also need to continue to be involved, if not immersed, in a social milieu to minimize the reduction in self loss, and with it their humanity. 

Although an immersion into the social environment won't cure the disease, it can definitely slow the progression of it and help forestall the advanced progression of self loss.

One of the first steps towards addressing this disease is to use pharmacological measures.  However, pharmacotherapy does not address the need for continued social involvement and self-enhancement. Altering the brain chemistry pharmacologically can be helpful, however all too often it is used in isolation of any other measures. In fact, without social involvement to continue to reinforce a person's social behaviors, the likelihood for pharmacotherapy having any appreciable benefit is negligible. 

Furthermore, the chemical changes that social interaction creates within the brain may be more beneficial than pharmacological chemical enhancements.^7,8,9  Individuals suffering from this disease need to be treated not just medically, but socially as well. Facilities that treat Alzheimer's residents with medical care only will do nothing more but accelerate the progression of the disease, and with it, the loss of the social soul.     

Their inability to understand their basic social self transcends the normal biological pathology that is so frequently used to describe Alzheimer's disease. It should, therefore become evident to long-term care staff that this disease is more than just a biological disease. 

The most unfathomable nature of this disease, which makes it so difficult for people to think about and imagine, is that in the final stages, the person often has a heart beat and respires, but fails to comprehend much, including the sense of self.

Not only must we progress in our biological sciences toward treating Alzheimer's, but long-term care facilities must also invest more time in keeping those with this disease engaged in their social surroundings to minimize the social demise of the social self.

Brian Garavaglia, PhD, is a long-term care administrator, gerontologist, educator and consultant. He has worked in health care for approximately 26 years and has worked in all phases of health care including acute, subacute and long-term care environments. His area of specialization is older adults and the long-term care environment. He has continued to research, publish and be an advocate for the older adult population as well as teach at various colleges within the Detroit-metropolitan area. His research interests are numerous, currently working on how stereotypes influence the diagnostic implications for dementia in the older adult long-term care population. He also has a strong interest in neuroscience and the neuro-social psychological factors related to aging as well as how social-gerontological issues affect the regulatory and political climate in long-term care.

References
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