Template Tools
Humanizing Communication with those with Dementia by Melissa Alemán, Ph.D. PDF Print E-mail
Melissa Alemán, Ph.D. -- Communication and Aging
Tuesday, 19 May 2009 13:49

When you can’t hear my voice anymore, will you be able to feel my love?
~ Thomas DeBaggio (2002) Losing My Mind

Dr. Melissa AlemánAll the matriarchs in my family that lived beyond 70 have spent their final years with probable Alzheimer’s disease or related dementia. As my mother moves closer to the age when her own mother began her decline with Alzheimer’s our conversations about our prospective futures that include the potential for living with dementia become increasingly frequent, although not necessarily infused with despair. Instead, we try to focus on the new selves that emerge with dementia and embrace strategies in which we can humanize a disease that many claim as a “social death” for sufferers. We explore how we were changed by our relationships with our loved ones with dementia and honor the relationships that were revised as a result of dementia. To have these difficult conversations, we are required to view dementia with humanity and confront our own fears and cultural obsessions.

What does it mean to humanize our communication with those with dementia? Humanizing our communication begins with viewing people with dementia as social beings, moving away from medicalized discourses of dementia that objectify aberrant behaviors as detached from the person – as mere disturbances, aggressions, or wails that caregivers must “cope with” and “manage.” We begin by listening to the voices and experiences of those experiencing dementia and attempt to understand both their suffering and joys. Thomas DeBaggio (2002/2003) helps us to do this as he writes of his own journey with Alzheimer’s in his memoirs When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s and Losing My Mind: An Intimate Look at Life with Alzheimer’s. He writes:

It has not been long since I last looked into the chaos of the abyss and cried. Now that tarnished world beckons again. I loosen shards from the steep walls to begin my long descent into the lonely world of silence. It is a world so secret its vocabulary has not yet been written (2003, p. 27).

Indeed, as DeBaggio writes, we know very little about the inner worlds of people with dementia; nor do we have an elaborated vocabulary to prepare us for our own experience. The uncertainty, chaos, and disorder for those who care for persons suffering from dementia and for those in the early stages of awareness like DeBaggio, can be terrifying. This terror is not only a result of the actual experience of cognitive impairment, but of our cultural ideals and sensibilities about what it means to be a person.

As a culture we have storied dementia as the end of an inner world and the disruption of one’s self-narrative. This limited construction of self not only fails to recognize the possibility of humanity in fragmented selves and increases anxieties about aging with dementia, but also limits how we conceive of our relationships with persons with dementia. This is not surprising, given the individualist sensibilities in American culture in which one’s sense of self is bound to one’s ability to sustain a coherent (and linear) life narrative (Ballenger, 2006). To be sure, to ‘lose one’s mind’ is perhaps among our greatest cultural fears. Yet, what happens to our communication when we cease to anticipate a coherent narrative from others? How can caregivers and family members enter into a fragmented, disintegrated, and often suffering reality of loved ones with dementia? This is, perhaps, a call to confront our own fears, both personal and cultural.

Norberg (2001) writes that people caring for those with dementia need to learn how to meet them in their world, for suffering with dementia not only leads to isolation from others, but also a sense of isolation from one’s self. The strategies she suggests are rooted in person-centered communication that confirms the personhood of the individual with dementia and the multiple and often competing realities they proffer. While confirmation validates the experience of the person with dementia, it is her second suggestion of consolation that truly embraces the humanizing and relational character of communication. Norberg (2001) asserts that

Consoling nursing care presupposes carers who can be in communion with sufferers and bring about a connection to light, goodness, beauty, and life. . . in order to be able to help people with severe dementia achieve experiences of beauty, goodness, light and life – that is, the sacred sphere – carers need these experiences themselves. They need to feel at home with themselves to be able to welcome others and offer them a home. (p. 168)

Consolation, according to Norberg, is communicating with people with dementia in a manner that promotes communion and connection, wholeness and integrity, and understanding – to offer a sense of home in an experience of homelessness. Norberg’s call is for us to engage in relationships with people with dementia, to see our encounters as connectedness and defined by a sense of “we.”

To confirm and console, then, requires us to let go of expectations of coherence and accept a fragmented and disintegrated story and interaction. It is to experience a relational presence with someone whose temporal, grammatical, and semantic vocabularies might diverge from our own. Most importantly, it is to experience the wholeness of a person; rather than focus on specific behaviors that must be managed, to instead learn what relating with them anew means in each moment. While neither of my grandmothers’ selves with dementia approximated their earlier selves, we have found that we created new relationships with them as each new self emerged. It is in seeing and validating those constantly shifting selves that we can form new relationships with our loved ones, while simultaneously having our own selves continually shaped in those relationships. To be sure, it is in respecting these newly emergent relationships that humanizing communication can occur.

 

References

Ballenger, J. F. (2006). Self, senility, and Alzheimer’s disease in Modern America: A history. Baltimore, MD: Johns Hopkins University Press.

DeBaggio, T. (2002). Losing my mind: An intimate look at life with Alzheimer’s. New York: Free Press.

DeBaggio, T. (2003). When it gets dark: An enlightened reflection on life with Alzheimer’s. New York: Free Press.

Norberg, A. (2001). Communication in the care of people with severe dementia. In M.L. Hummert & J.F. Nussbaum (Eds.). Aging, communication, and health: Linking research and practice for successful aging (pp. 157-173). Mahwah, NJ: Lawrence Erlbaum Associates.

 

Comments (0)Add Comment
feedSubscribe to this comment's feed
Write comment

busy