HC-One's Graham Stokes in the New Yorker
Today a New Yorker article featuring HC-One's own Graham Stokes commentary on innovative approaches to dementia care has been published.
This immensely valuable read really focuses on the ethics of memory care. The article cites various experts and studies, pulling in different opinions on how ‘truthfully’ care staff ought to be when interacting with dementia patients.
Graham is quoted at length, discussing his consultation with dementia patients, all of whom expressed that they did not wish to be misled while struggling with their memory. It is highlighted that he was a key voice in pushing the British Alzheimer’s Society to condemn Penny Garner’s method of dementia care and focuses on his work encouraging a truthful dialogue with dementia patients which upholds at once their dignity and comfort.
Here at HC-One we would like to offer a big congratulations to Graham for this outstanding achievement.
Here is an extract from the article:
"A few years ago, Graham Stokes, a British expert on dementia care, chaired a study on ethical issues in the field, and included on his panel several people with the disease. “All of them said, Why do you lie to us when we are at our most vulnerable? Would you wish your relationships with others to be based on deceit? Why do you create fake worlds for people with dementia? Why do you convert care homes to look like pubs or cinemas? For me,” he says, “that was a light-bulb moment. It shouldn’t be about deceiving people. It should be about giving them meaningful lives in the present, rather than trying to keep them in nostalgic themes from the past.”
Those working in dementia-care often ask, should a person be defined by thoughts and memories? Aren’t emotions and bodies enough?
Stokes was one of the people who pushed the British Alzheimer’s Society to issue its statement condemning Penny Garner’s method. To him, even passive lies—artificial worlds and fake bus stops—were just a lazy short-term solution that avoided deeper problems and engendered problems of their own. “It just creates confusion,” he says. “You’re standing in the hallway of a building and there’s a bus stop. It’s not easy—it’s challenging when someone wants to go home. But that gives you an opportunity to talk about the desire to go home, because home represents something they’re not getting in the present. I think that’s a far more meaningful way of working than sticking up a bus stop when you know it’s nothing more than a blazing lie.”
There are practical problems with lying, too. Dementia doesn’t proceed in a steady, systematic fashion; in most people, at least in the early and middle stages, periods of confusion alternate unpredictably with periods of lucidity. So if you tell someone their mother is coming to pick them up, and at that moment they remember that their mother has been dead for thirty years, they will know that you are untrustworthy, and might justifiably be suspicious of other people as well. Even if they forget the reason they don’t trust you, the feeling may linger. (A study published in Cognitive and Behavioral Neurology in 2014 found that Alzheimer’s patients feel emotions long after they remember their cause.) And, even if the person never glimpses, in an awful moment of lucidity, how they are being manipulated, still they have lost something in the relationship, whether they know it or not.
Then there is the issue of inconsistency among all the people with whom the person comes in contact. What if a person with dementia asks for his mother, and one person says, “She’s out shopping,” another says, “I’m afraid she’s dead,” and a third says, “Are you feeling sad?” This problem is not a minor one. Many people with dementia are already suspicious of those around them. Some suspect that people are lying to them (and, of course, they are often right), or that someone who claims to be a relative is actually an impostor. Some suspect that their belongings have been taken (they may be right about this, too—residents of nursing homes often wander into one another’s rooms and pick things up), or that they’re going to be attacked. Some believe that the care staff have abducted their children. Even if they don’t suffer from these more extreme fears, they will likely be aware that, since their diagnosis, other people suspect them of being confused whether they are or not, and so may be second-guessing what they say, or making decisions without consulting them. So the risk of arousing suspicion is a big risk to take, especially if the whole idea is to ease a patient’s anxiety.
There is also the problem that, since lying implies a lack of respect, its acceptance can lead to disrespect of other sorts. “Most of the caring workforce is quite transient and not very educated, and you want to convey to them the value of the person they’re working with,” Graham Stokes says. “But, if they see you lying to patients, you’re saying, They’re not really people. And then you see other parts of the care changing: they might leave the door to the toilet open, while you wouldn’t do that with real people.”

To view the full article please click below:

The comforting fictions of dementia care - The New Yorker - 1st October 2018
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