During all of my years of work in acute care, I never ceased to be amazed and appalled at the response when I would inquire of direct care staff about a particular patient by name. Not always, but with far too much frequency, this inquiry would be met with a puzzled look on the staff member's face, and then after a delay, "[horizontal ellipsis]oh you mean room 27, bed 4? Well, I can't tell you very much as I just got her this morning." (This would have been at least 4 hours after the start of the shift.)
How is it possible to care for anyone, in any capacity, and know him or her only by geography or bed layout, not by name or smile or hair color or home address or[horizontal ellipsis]?
And not to exempt other caregivers in other settings from such depersonalizations. How often have we witnessed the following or similar events?
Health care professionals assessing persons with dementia by speaking only to the caregiver, not the person.
"Is the west wing all done up?" Staff members talking loudly and enthusiastically to each other while shoveling food into the mouth of long-term care residents who need assistance with eating.
Meals prepared and housework done by home care aids without consulting with the person who owns the home about how she or he would like things done.
The person who has always been a late sleeper and never ate breakfast being forced to be up at 6 a.m. and ready for a full breakfast at 7 a.m.
Unfortunately, there is little need for further examples of the potential for depersonalization that exists throughout the continuum of care, especially for those persons with dementia who often cannot advocate for themselves.
Fortunately, many courageous advocates for persons with dementia have stepped forward, most notably Tom Kitwood, who left us with a great legacy of guidelines for the development of person-centered care. My mind turns to a couple of other poignant reminders.
A person is a person, no matter how helpless, no matter how small. (Dr Seuss from Horton Hears a Who.)
Persons with dementia have not really lost their memory or their personality; they have just lost access to it. (Oliver Sacks)
It is our duty then, as staff members and paid caregivers, to help persons with dementia and their care partners to gain access to the rich resources of memory and personality that are masked by the mantel of dementia.
I thank Sharyce Floss, Dan Kuhn, and Barbara Dennis for sharing their poignant reminders about the vital need for person-centered care. In the following articles, Sharyce and Dan step out of their staff shoes and into the shoes of persons with dementia and their care partners. Barbara Dennis shares her frank and moving plea for her own need to be recognized as a person, in addition to being a care partner.