Some Mindful Alternatives to Common Alzheimer's Speak.
Reviewing the New York Times articles from this past year on Alzheimer's, I tried hard to find some positive words, and encountered instead a language imbued with fear and coldness, and that dehumanized the persons living with the condition:
They are 'patients', 'sufferers', 'victims', or sometimes just plain 'cases'.
They are 'afflicted', 'demented', or 'suffering'.
They are being cared for by 'caregivers'.
They 'suffer' from a 'dreaded', 'terrifying', 'terrible', 'fatal', 'horrific', 'devastating', 'bad', 'debilitating' 'disease', called 'dementia'.
They are being 'robbed' of all that matters most.
They live in 'assisted living facilities'.
They are 'stages', beginning, middle and end, early or late onset.
They present 'behavior problems' -- they 'act out', they scream, they wander, they are 'combative'.
They need to be 'managed'.
They are a 'burden'.
They have an illness that needs to be 'attacked', and 'beaten'.
Having been around enough persons who live with dementia, I could see why. It is true, that left on their own, and not cared for properly, the ones whose thinking mind is slipping can present a scary picture.
More to the point though, is the fact that our collective response to the condition is what creates that picture. In our efforts to move forward and treat Alzheimer's as a medical emergency, we have abandoned the earlier view of dementia as a natural evolution of aging. While scientifically correct, this new approach has also caused us to lose the human aspect. The culture change philosophy of elder care that has been making waves throughout long-term dementia care communities in the U.S. and other countries represents a step in the right direction. Attention to the language being used to think and talk about Alzheimer's and dementia should be a part of that movement. As shown by the New York Times, we are still far away from that reality. One small drop at a time, here is a list* of new words to use if we want to be kind and mindful of the persons living with Alzheimer's:
Respecting the person.
May you too be an agent of change, and spread the good words about Alzheimer's and the persons living with it.
Posts
Wonderful post. Reminds me of a documentary film recently watched called "I Rembember Better When I Paint". The film is about how the creative arts helps those with dementia such as AD, and the ways and hows of mindful communication are important. The Presence-Project you mention sounds inspiring.
ReplyDeleteTo me, dementia, Alzheimer's disease and other technical terms cannot be replaced by "forgetfulness." This would be the equivalent of calling stomach cancer a "tummy ache." Many of us are forgetful and forgetfulness is a normal part of the aging process. Alzheimer's disease and other forms of dementia are a disease process, not a part of normal aging.
ReplyDeleteKindness, dignity and respect should always been the hallmarks of the way we treat other human beings, no matter what their age or mental status. When we stray from this, no matter what the verbiage, we err. Instead of focusing on the person's lost abilities, we should work to find new abilities that may never have been discovered. My father-in-law became a watercolor artist, having never painted before the diagnosis of Alzheimer's disease. He learned at a point when he could no longer hammer a nail or change a light bulb, all because a retired artist donated his time to teach him and others like him. In the creation of art, my father-in-law regained his self-respect and we were given a way to connect with him when he had lost most of his language function. The way we speak and write about dementia is important. The way we treat the people living with this disease is even more important.
Where I work ,for the last half of 2010 we launched a program addressing this exactly. Getting rid of words like client,patient,case ,allows us to feel and and imagine ourselves maybe one day in this boat. It is scary?, it most certainly is but when we stop viewing people as people and see them just as problems it is very de-humanizing.
ReplyDeleteThank you for this post,
Finding value in all your offering. Thanks again
ReplyDeleteThank you for this timely post. As an editor in the healthcare field, I would be interested to know more about the Presence-Project. Is there somewhere I can go to find information, or could we correspond off line?
ReplyDeletewould we stop searching for healing, when we consider sickness as a normal part of living? could we integrate those people much more into our so called normal lives? that would be enjoyed enormously, i´m sure. health and healing powers are also part of those who are above all thought of as sick. but patience. we are all learning in my view .
ReplyDeleteThank you Sam. Yes I know about the documentary you mentioned. There is so much we don't know about Alzheimer's, so many untapped opportunities to engage with the persons who are living with it, and so much fear and ignorance to overcome in the mainstream and scientific communities.
ReplyDeleteEllen, I agree with your point that Alzheimer's is not a 'normal' part of aging, and I do refer to it in my post. This being said, if you were diagnosed tomorrow with Alzheimer's, would you want to be called demented? I certainly wouldn't . . . The truth is the persons living with Alzheimer's may be losing some of their ability to think rationally and across moments, but they are not losing their mind, as suggested by the word dementia - without mind -. The mind is bigger than just thinking, and includes all the other five consciousness doors, and the heart, and spirit also. 'Forgetfulness' is the word that is commonly used in the AgeSong communities (founded by my Nader Shabahangi), and I can tell you everyone from residents to their care partners are all the better for it. 'Forgetfulness' also highlights some of the positive aspects from Alzheimer's and so called dementia. The ability to forgive, and to live in the present. A greater capacity to love, from no longer having the head interfere. A playfulness that often makes the persons want to sing and dance, and improvise . . .
ReplyDeleteEllen, thank you also for sharing the story about your father-in-law. So beautiful, and one of so many . . .
ReplyDeleteBD, thank you for sharing your work success story. You are very fortunate to work in such a place. And yes, that's the whole thing. We are all people, regardless of how we think, speak, act, appear. One should never give up on anyone. One should always open the heart to welcome their reality, all of it. It is good for one's heart also . . .
ReplyDeleteSmiling Heart, thank you for your appreciation. You make my heart smile . . . :)
ReplyDeleteEd, I will be happy to tell you more about the Presence-Project offline. Just email me at address provided in Contact link.
ReplyDeleteDoris, thank you for kindness, . . . and patience. Yes, we are learning, and these times are quite pregnant with wonderful lessons, inspirations, and possibilities. We all also have to unlearn some of our collective ways, and take model on other cultures. I am thinking about the way the Tibetans view dementia/forgetfulness for instance, as shared by Olivia Ames Hoblitzelle in her wonderful book, 10,000 Joys and 10,000 Sorrows. Very inspiring.
ReplyDeleteThank you Marguerite for your kindness and patience. Thank you all for sharing thoughts and feelings. Will look for Olivia Ames Hoblitzelle´s book.
ReplyDelete:-)
Marguerite, hello and thanks for your insights. I totally agree but take it into the wider scope of life. Words. We need to be skillful about our choice of words because it not only affects others it also subtly or not affects us. Words as this morning has been a "disaster", "didn't go as well as planned". Or he is such an "idiot", to, "he took it the wrong way" and so on. The meeting was a "complete write-off" and so on. We are all so prone to dramatization and exaggeration and impersonalisation (caregiver etc). I often hear teenagers talk like this and it brings the spotlight back to how not so long ago I too engaged in it willingly. Why go there why give the ego all this free reign.... In the short term it can add humour and drama but in the long term it blows things way out of proportions dragging out emotions through as rigmarole that is just exaggerated and tiring.
ReplyDeleteOh my, so glad I didn't miss this post. Wonderful conversation, and funny I was just writing about my grandmother's discomfort with the word caregiver and my attempt to find something better. Thank you so much for this. I will pass it on and come back to it.
ReplyDeleteI agree that it is so much kinder to everyone involved to use words that are less negative and victimizing (when I hear the word demented, I always think of the dementors in Harry Potter...), and that it does not mean we are in denial of the magnitude of the situation.
Jess, I am so glad! And may your grandma partner happily with her care partner!
ReplyDeleteYes, Miro, we are really talking about right speech here . . . with an added twist of right understanding about this particular condition called Alzheimer's.
ReplyDeleteThank you so much for expanding the conversation.
And may you be well!
Link to Dr. Allen Power's post, responding to this post:
ReplyDelete'Watch Your Language' http://bit.ly/hrkqbh
Thank you Al!
very insightful. my mother experienced steroid induced psychosis last year. i was amazed how quickly she was labeled and dismissed - even by care providers in the mental health field.
ReplyDeleteYes, we need to all speak up, and raise the collective consciousness on this issue.
ReplyDeleteOh, this is marvelous. All too often we forget the power of language, the transformative power of language. Just like anything else, we can either choose to give language positive energy or negative energy.
ReplyDeleteThank you.
Juliana