Barak Gaster, MD, has been a primary care doctor in the General Internal Medicine Center at UW Medicine for over 20 years. His career has focused on developing meaningful solutions and tools to help tackle prevalent and difficult issues in primary care, such as how primary care physicians should best manage chronic pain or best talk to patients about herbal medicine and dietary supplements. In the last three years, Dr. Gaster has repeatedly noticed how much primary care physicians struggle to identify the early signs of dementia, manage care, and work with specialty neurology centers like the UW Memory and Brain Wellness Center (MBWC).
As the Primary Care Liaison for the MBWC, Dr. Gaster works with neuropsychologist Dr. Kristoffer Rhoads on a project to improve dementia diagnosis and management in primary care clinics in Washington State, aimed at doctors who practice family medicine or general internal medicine. In this Q&A, he explains the rationale for his work, with a focus on his new dementia-specific advance health directive, ‘What If I Had Dementia? Planning for the Future.’
Why have you chosen improving the care of dementia in primary care clinics as the focus of your problem-solving mission?
An early diagnosis of dementia means that patients and their families are better positioned to receive quality care. Family medicine and other primary care doctors are usually the first medical professionals to identify cognitive impairment in their patients, but as I look around the primary care setting, I see a lack of knowledge about how to detect cognitive decline and have conversations with people about dementia. Currently, there are many people who do not have their dementia identified. For people without a diagnosis, they may reach late-stage dementia getting care that doesn’t fit their needs or wishes.
I want to help primary care doctors feel more confident in identifying the disease sooner, and be more knowledgeable about when to make referrals to specialty care, and how to stay fully engaged with this disease. I want to help primary care providers feel better prepared to be the trusted guides which patients and families desperately need. With the help of the UW Memory and Brain Wellness Center (MBWC) I’m developing this educational training program. My collaborator, neuropsychologist Dr. Kristoffer Rhoads, is an especially great resource, with deep knowledge of how we can best help people with dementia across Washington State.
As part of this program, I am helping the MBWC to improve the effectiveness of referrals from primary care. The goal is for neurologists and primary care doctors to work together as an integrated care team to diagnose dementia earlier and more accurately, to provide fully comprehensive care. Essentially, I want to help the MBWC to do what it does best—to help with the complex diagnostic questions and difficult treatment questions when they arise. The reality is that a lot of the management of dementia occurs in primary care where, ideally, patients have a long-term relationship with a doctor they already trust.
As part of this project, you developed a new tool to help people express their wishes about their own medical care if they were to develop dementia in the future. Why is something like this needed?
The unique thing about dementia is that a person often lives with it for a much longer time than other serious diseases, and dementia affects decision-making capacity much sooner. Dementia often involves a gradual descent into lesser quality of life, but in such a tricky way that it’s hard to say what people’s wishes would be for medical care as dementia worsens. Everybody wants care to relieve suffering, but we can differ in our wishes for medical interventions to prolong life. And some of these interventions, especially for people with advanced dementia, actually reduce quality of life and can be painful and scary for someone with cognitive impairment to go through.
For family members and doctors, guessing what someone would have wanted in terms of life-prolonging medical care is often a wrenching process, such that having a dementia-specific advance care directive can relieve a lot of the anxiety and uncertainty. It can give guidance that will help caregivers make medical decisions better aligned to their loved ones’ needs and wishes.
If dementia is such a common and difficult experience, why doesn't this form already exist?
None of the commonly available advance directive forms that people use include language that pertains to dementia. I was surprised when I realized that. Part of the reason is that it’s difficult to give people a way to describe what will probably be changes in their goals of care along the continuum of the disease, from early to mid to late-stage dementia.
The organization End of Life Washington does offer a dementia-specific advance directive, which works well for some people. This long, very thorough document focuses on detailed matters of living situations, driving, finances, intimate relationship preferences, and more. I worry that most people will find it too overwhelming to fill out. But many of these people do have relatively clear ideas of what they would want if they developed dementia. The numbers of people worried about dementia is very high, and I’m seeing tremendous interest in having a tool to express one’s wishes for medical care in the case of worsening dementia.
Tell us about this new advance directive you’ve been developing and how it addresses some of the current issues?
Over the past year, I’ve been developing an instrument that allows people to easily express their wishes in a way that is useful to future caregivers. This form is not so much about end-of-life planning as it is about helping to align the medical interventions that people get with the care that they would have wanted.
This new form is intended for a broad audience. It’s short and simple and gives brief descriptions of mild, moderate, and severe dementia. The form asks you to read the description of each stage, and then mark the box that reflects what goals of medical intervention are in keeping with your values if you were at that stage of dementia. It also includes some implications of choices to prolong life; for example, a hospital stay for an infection might be fraught with complications and make dementia symptoms even worse. Anyone interested in taking a look at the form can find it online at: www.dementia-directive.org.
How do you envision this form being used? When should people fill it out?
Ideally, everyone when they turn 65 should be offered this directive, together with a standard advance directive for medical care. The completed form would be entered into their medical record, and family members or other powers of attorney should get a copy. Although it’s not technically a legally binding document, people could certainly choose to have it notarized if they would want it to be more durable.
Most importantly, such a form provides a vehicle for doctors to talk to patients, and for patients to talk to their loved ones, about cognitive impairment and dementia at a really important time in their lives, when they reach age 65. This conversation would give doctors an important opportunity to make people aware that not all memory loss is a sign of advancing dementia, and to highlight programs that may help improve brain health or delay cognitive decline through beneficial changes in diet, sleep, and social and physical activity.
— by Genevieve Wanucha
Barak Gaster, Eric B. Larson, J. Randall Curtis. Advance Directives for Dementia: Meeting a Unique Challenge. JAMA. 2017; 318(22):2175–2176: https://jamanetwork.com/journals/jama/fullarticle/2662678