Do You Know Me?

 

By Barbara Speedling, Quality of Life Specialist

 

Do you know me?   This is often the first question a resident with dementia will ask me during an interview. When I’m asked to evaluate a resident, I don’t know much about the person beyond what I’ve been told by caregivers or read in the medical record.  Until I sit down and talk with the resident, I have little more than a superficial understanding of what might be motivating the behavior the staff finds challenging.

While there are many aspects of communal living that the average adult would find annoying – like being restricted from moving about freely, going outside, taking a nap when you feel like it, eating whatever and whenever you want, sharing a room with a stranger, and the noise and overcrowding similar to what you might experience on a New York City subway at rush hour – what would otherwise be interpreted as a normal reaction to being limited is seen as abnormal and worthy of psychiatric intervention in the person with dementia.

In some cases, the behavior I’m asked to assess is nothing more than a personality exaggerated by dementia.  For example, a man who has been the head of his household, a business owner, described by family as a “man’s man,” who loves hunting, fishing, playing poker, and watching football with his buddies, is likely to be loud and in charge.  So, his yelling and attempts to tell others what to do is not behavior, but a man with dementia who is doing what he has always done. He just doesn’t fully understand that the circumstances have changed.

Understanding personality, or personhood, is the first and most important step to unraveling the motivation for a person’s behavior. Thomas Kitwood (1997) defines personhood as “a standing or status that is bestowed upon one human being by others in the context of particular social relationships and institutional arrangements” [1] 

In other words, our personhood is shaped by our relationships and interactions in the world over a lifetime. Dementia slowly erodes the memory of these things, but not all at once or in a predictable pattern. It is common for people to experience varying degrees of memory and understanding over the progression of the disease, but retain a sense of self-awareness even in the later stages of decline.

A study published by the National Institutes of Health asserts that failure to recognize the continuing awareness of self and the human experience of the person in the middle and late stages (of dementia) can lead to task-oriented care and low expectations for therapeutic interventions. [2]

Looking more closely at personhood will help caregivers to more successfully anticipate a resident’s needs and reactions. If it is known that you have always been extremely modest, the staff should anticipate that you will not feel comfortable being naked in front of a stranger.  They can then work to identify a way to incorporate this knowledge into your care plan.

There have been many times in my experience when learning something pivotal about the resident opens a new school of thought on why he is doing what he is doing. The is the common example of the resident who is a night-wanderer, going door to door, disturbing other residents. When it is learned that he was a night watchman in an office building, his behavior is understood and can be accommodated.

If you are going to understand why someone is doing what they are doing, you have to know who you are looking at. The assessment process common to most long term care environments fails to look deeply enough at personhood. Expand that process to include questions about how the person feels, his perception on the current circumstance, how much he knows about his diagnosis, and his feelings about his declining memory and need for a supervised environment.

In a study on self-awareness, it was found that people with dementia who had supportive family or caregivers retained their personhood more successfully. [3] So, person-centered begins with a more thorough assessment of the person now that dementia has begun to chip away at the very core of his being.

Look closer. Look beyond the diagnosis and recent medical history to who he was and how he is coping with who he is now. Learn as much as you can to help him hold on to the last shreds of his personhood. If you can do that, you’ll be surprised at how simple it might be to figure out why someone is doing what he is doing.

 

[1] Kitwood, T. Dementia Reconsidered: The Person Comes First; Open University Press: Buckingham, UK, 1997.

[2] Tappen, R; Williams, C; Fishman, S; Touhy, T.; Persistence of Self in Advanced Alzheimer’s Disease, National Institutes of Health, Image J Nurs Sch. 1999; 31(2): 121–125.

[3]  MacRae, H. Managing Identity While Living with Alzheimer’s Disease. Qual. Health Res. 2010, 20, 293–305.

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