LYNN CASTEEL HARPER

"I can count on one hand the occasions I saw administrators on the Gardens’ dementia unit spending time with residents and staff." – L.C. Harper

I could choose among twenty great quotes and a myriad chunks of wisdom to find a lead – off to this review of Harper’s timely and timeless manifesto on the care of people living with some form of dementia. I chose the above, because it captures the distance from which higher caregivers treat those in their stewardship. It also hearkens to the business – model of care in America. In fact, though, I could have used many quotes or phrases to highlight other aspects of Harper’s work just as readily.

Harper, a Protestant minister and former nursing home chaplain, tackles a very challenging subject, namely the way in which people suffering dementia should have their status as members of society maintained. Her work is a manifesto in which she brings numerous aspects and agents of care into focus, from religious institutions’ (primarily Christian) lack of focus to inappropriate drug administration, to the economic status of the hands – on employees tending to people (40% of whom, she notes, live off of public assistance themselves). Most of the book centers on the social psychology shaping how people perceive those in need of care as the title suggests. She promotes the view that the individual’s personal identity is paramount to sustain throughout every stage of decline, and the way to do this is to maintain a never – ending level of individual engagement to prevent “social death”.

Using such politically incorrect terms as “lunacy”, she presents some unorthodox points to ponder. For example, lunacy / madness / psychoses are all “positives” in the sense of being qualities added to the persona. Dementia, on the other hand, is perceived as a reduction of the persona. Of the two semantic categories, she has a certain affinity for the former.

"What if we defied vacancy’s tyranny and returned to madness for a moment—not as demon possession or constraint or a way to classify and contain people—but as needful folly in a world of stifling convention? Vacancy seems to suppress imagination; madness stirs it. Might we direct these motions toward compassion? Madness, understood as a window on a social world less ruled by mental conformity, might have some salvageable meanings for dementia."

Harper considers that a person suffering dementia is always a complete person, albeit with serious issues. The issues require attention as types of challenges rather than as deficits. A ‘lunatic’ has issues, an aged person with dementia is unhelpfully considered to have primarily vacancies.

Also of interest is her frequent reference to Ralph Waldo Emerson, a favorite personality of mine. While I have quoted the man’s lines about thought and memory in my own writing, I did not know that he, himself, experienced some form of dementia. His inclusion, as a specific personality, rounded out the humanity of her discourse very nicely.

Care for people with chronic dementia and memory issues generally, makes for dreadfully depressing reading. However, reading such work helps us all in reclaiming a bit of our humanity. Harper’s book helps define what problems need addressing to protect the dignity and quality of life for persons living with dementia either in themselves or someone in their care.… (plus d'informations)