Advanced directives generally aren’t given much attention until a medical crisis descends on an individual or family.
A University of Washington doctor decided to change things up.
Barak Gaster, a primary-care physician at the UW School of Medicine, came up with a five-page summary of options for those who want to get ahead of an Alzheimer’s or other dementia diagnosis.
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“We’ve seen more than 34,000 downloads in just seven days, and it’s now running about couple thousand a day,” Gaster told The News Tribune in a recent phone interview.
The dementia directive specifically asks: “What kind of medical care would you want if you were to develop worsening dementia?”
It then explains why that is an important question to answer, what you can decide to do and options for level of care based on the three dementia stages: mild, moderate, severe.
Unlike an advanced end-of-life directive or selecting a durable power of attorney, the main point of this form is the person filling it out is selecting goals for care.
Dementia is estimated to affect 20 to 30 percent of people who live into their 90s, he said.
The condition is a top reason why people “lose the ability to make decisions about their medical care,” Gaster said. “And all the standard living-will forms don’t really say anything about what somebody would want if they lost that decision-making capacity due to dementia. Other forms focus on persistent vegetative state or coma or an imminently terminal condition, but none apply to dementia.”
Mimi Pattison, medical director for Franciscan Hospice and Palliative Care, had a quick response when asked what she thought of the new form: “Very excited.”
In 2008, Pattison was appointed by Gov. Christine Gregoire to the Medical Quality Assurance Commission for Washington State and served as chair 2010 to 2012. In 2014, Pattison participated in an Alzheimer’s Disease Working Group charged with creating a care plan for those diagnosed with Alzheimer’s and other forms of dementia.
She knows too well how families struggle with decision-making.
“We are so long overdue for this in support of patients and families,” Pattison said.
Gaster spent about two years creating the document.
“I’ve been really careful to get advice from experts in neurology and palliative care and geriatrics to make sure it was designed in a way that made sense to people who had expertise in those areas,” he said.
While he wanted the guidance on the document informed by experts, he knew it had to make sense to everyone else.
Gaster’s said he’s been distributing the form to patients “for about a year or so, and, in the process of discussing it with them, I’ve also been able to tailor the wording better over time.”
The new document is a breath of fresh air for doctors, patients and their caregivers.
In general, Pattison noted, “Families have gotten better about legal and financial planning, but health care directives have not received much attention. Most families don’t have a clue where to begin.”
As a result, “There’s been more of an effort to do advanced directives in medical settings and cognitive screenings in wellness to take it to the next level.”
Numbers cited in the state plan report released in 2016 help define the scope of the issue:
▪ Alzheimer’s disease is the third leading age-adjusted cause of death in the state. While death rates of cancer, stroke and heart disease have declined, the death rate for Alzheimer’s is on the rise.
▪ About 107,000 people in Washington have Alzheimer’s or other forms of dementia. By 2040, that number is expected to grow to more than 270,000.
▪ It’s estimated there are up to 324,000 unpaid family caregivers of persons living with dementia in the state.
A recent conference in Tacoma for with Alzheimer’s caregivers was standing room only. The conference’s keynote speaker and dementia care expert Laura Wayman told The News Tribune in September that “everyone should be dementia aware because this is a national pandemic.”
Given that warning, advance planning becomes even more critical.
Romy Royce is a nurse practitioner with Landmark Health delivering care locally to high-risk patients — those dealing with four or more chronic medical problems and who may or may not have been in the emergency room the past year.
Royce said that it helps in treating dementia patients if they have strong family support to boost monitoring and give her updates during visits.
She also said there are families who won’t even talk about dementia conditions in front of the patient.
In talking about it, either the patient or family “feels it’s a betrayal. But other medical conditions, they can say the disease. Cancer, diabetes.”
“Like any behavioral health diagnosis, it’s tricky,” Royce said.
That’s where having a plan already in place can help.
Through trial and error, Gaster has found his own formula for getting patients on board is to convince them to consider using the form.
“My initial stage of developing this directive was that it would be ideal to give to someone at the very earliest stage of cognitive decline. Interestingly though, my experience has been that it’s a really complex mental challenge to imagine a future state of yourself with a different declining mental capacity and to say what you’d want for yourself in that future state,” he said.
“It made me realize that the best time to offer a tool for people to express wishes like this is before they have any signs of cognitive impairment.”
The response from patients and their families so far has been positive.
“With the vast majority, their eyes light up and are so grateful,” he said. “That speaks to how much this disease is on many people’s minds. It’s one of the things people worry about the most.
“The way I’m approaching offering this ... when anyone turns 65 or 70, this is really something to look at.”
▪ Advance Directive for Dementia (main website featuring Gaster’s work): dementia-directive.org
▪ Dementia road map, a guide for family and care partners: http://bit.ly/2sZNnuK
▪ Alzheimer’s Association support groups: http://bit.ly/2Gi13Wt
▪ Dementia safety info kit: http://bit.ly/2wdZuqz
▪ Prepare for your care: prepareforyourcare.org/welcome
▪ The Conversation Project: theconversationproject.org/
▪ Other directives from End of Life Washington: http://bit.ly/2ngOYYT