HANOVER — Medical providers, legal professionals, caregivers and others who work with senior citizens have long been advocates of creating advance directives.
These legally binding documents spell out people’s health care preferences in the event that they are no longer able to make health and financial decisions on their own. While these documents typically cover many scenarios involving end-of-life wishes, they often do not delve deeply into memory disorders, including dementia and Alzheimer’s disease.
But a new type of advance directive created by graduating Geisel School of Medicine student Megan E. Bunnell and Dr. Robert Santulli, a professor at both Giesel and Dartmouth College’s Department of Psychological and Brain Sciences, the Dartmouth Dementia Directive aims to get people thinking more about what care they wish to receive if they are diagnosed with a memory disorder. The Dartmouth Dementia Directive — referred to as the DDD — isn’t meant to replace the standard advance directive; it is simply meant to supplement it.
“When most people fill out an advance directive, they think about a situation like a car accident that leaves them unable to express any wishes or desires at all. Dementia presents an interesting ‘issue’ in terms of advance directives,” Bunnell wrote in an email. “Someone may state that, if they develop dementia, they want a certain level of care, but when they actually develop dementia, they may express different wishes entirely. People with dementia — unlike people in, for example, a coma —are able to express desires to some degree, depending on the severity of the dementia.”
The DDD is divided into three separate sections: medical illness, nutrition and fluids, and preferences regarding hospitalization. Each of those categories is then divided up into separate statements including
■“I want to remain alive as long as possible, no matter the circumstance, and I want to undergo all medical treatments and other interventions in order to prolong my life,” (medical illness)
■“I want to receive no nutrition if I cannot feed myself. I do not want to be offered food or fluids in any form if I cannot feed myself. I would be willing to receive oral comfort care in the form of mouth swabs or ice chips,” (nutrition and fluids)
■“I would be willing to be admitted to a hospice facility, but not a hospital, unless my comfort cannot be maintained in a hospice facility,” (preferences regarding hospitalization).
Each of those statements includes options for mild, moderate and severe dementia, so people can choose different options and care for different stages of their memory disorders.
“It’s more nuanced that way,” Santulli said. The document also has undergone a lot of revision as the Santulli and Bunnell have brought it to assisted living facilities and other senior care organizations in the Upper Valley. “We keep changing it until we get it right.”
Dementia is drawn out over multiple years and is increasingly common as the population ages.
“Decisional capacity diminishes over a long period of time,” he said, making the case that people should think about these topics earlier on in life.
Tim Caldwell, of Caldwell Law, an estate planning and settlement firm based in Lebanon, has served as an adviser to the research team. He said the practice is continuing to encourage its clients to consider a memory disorders in advance directives.
“I think you need to start thinking about it before you need it, and then you need to review it periodically as life changes. And life always changes,” Caldwell said. He recommends filling out the form and then revisiting it every two or three years. “Our thinking on a variety of topics including — end of life and dementia — it changes. It evolves. What I’m thinking today as a reasonably healthy person may change tomorrow. We want our best thinking in place at the time our advance directive is needed.”
With the stigma attached to memory disorders, it becomes an even more difficult topic for family members to discuss.
“This project has two main aims,” Bunnell said. “The first is to help an individual person plan for the care that they would want should they develop dementia. The second is to help the caregivers who may ultimately be responsible for making decisions for someone with dementia.”
In other words, it gives caregivers a blueprint that can help them navigate an often murky disease.
“Families can go through terrible, terrible, distress trying to do the right thing,” Santulli said. “Our hope is that this directive will make it all a little less terrible.”
Ideally, the DDD will be incorporated into existing patient records at health care facilities including Dartmouth-Hitchcock Medical Center. The project’s next stage is a five-minute video that DDD users can record along with filling out the document. This summer, a team of undergraduate and medical students will meet with people who filled out the DDD to record those videos, which will then be included with their forms.
“We’re breaking new ground with that, as far as we’re concerned,” Santulli said, adding that, in addition to having a people’s wishes on paper, the video could help caregivers connect more with what their family members want — and why. “It’s very doable with technology that a huge amount of people have in their pockets.”
While Bunnell is graduating, Santulli will continue to work on the project with undergraduate and medical school students. They are still looking for adults who want to participate in the process.
“There’s a need and an interest,” he said.
Editor’s note: To participate in the video element of the project, email DDDirective@gmail.com. For more information about the Dartmouth Dementia Directive — including a copy of the form — visit https://sites.dartmouth.edu/dementiadirective/. Liz Sauchelli can be reached at esauchelli@vnews.com or 603-727-3221.