Two weeks ago, the state of Massachusetts passed a landmark, multifaceted law that aims to improve diagnosis and treatment of Alzheimer’s disease and other forms of dementia. Currently, no other state in the country has a comparable law. Read on, all. Mr. Kohl’s story may sound eerily familiar to those facing a will contest or trust contest.
The legislation was spurred on by Massachusetts resident Rhiana Kohl after the delayed diagnosis of her husband’s early onset Alzheimer’s disease. Doctor after doctor missed his diagnosis when her husband first started showing symptoms in his mid-40s. Typically, he began having trouble remembering, completing tasks and controlling his temper. In and out of doctor’s offices, he received diagnosis of depression, stress and ADHD. During the protracted process he took related medications, endured counseling and anger management courses as he further slipped away from his family.
While Kohl experienced many surprises throughout the seven years it took to receive a proper diagnosis, none was as shocking as the awareness that healthcare workers — from nurses to primary care doctors and specialists — do not understand this common illness that affects 5.7 million Americans. Unfortunately, her experience is more the norm as opposed to the exception.
We have discussed here on this blog the difficulty with diagnosis as there is not a single diagnostic test to identify dementia and Alzheimer’s disease. Doctors arrive at a diagnosis only by assessing mental skills and memory, and ruling out other causes, a lengthy, tedious and costly process. Furthermore, the only way currently to receive a definitive diagnosis is posthumously through autopsy of the brain. That’s why scientists and like-minded philanthropists like Bill Gates, are seeking better diagnostic tools.
Kohl’s case with her husband directly relates to our interest and the intersection of dementia and inheritance dispute litigation, like will contests and trust contests. During the time that his diagnosis was delayed, her husband managed to max out all of their credit cards and drain their bank account, leading to financial ruin for the family. Furthermore, it took two years to arrive at a diagnosis which was also costly. Earlier diagnosis would have made it possible for Rhiana Kohl to take over managing the finances. It would have also given the family the opportunity to spend quality time with their husband and father in the early stages of the disease.
What if Mr. Kohl had signed a will during this time? No doubt, medical records (i.e., evidence) would have discounted the presence of dementia and/or of cognitive and executive function declines. However, this is precisely why a keen understanding of the latest medicine involving dementia is so important for will contest lawyers and trust contest lawyers alike. In fact, everyone involved with probate litigation should pay close attention.
Massachusetts’ new legislation requires physicians, physician assistants, and nurses to undergo training in diagnosis, treatment and care of patients with Alzheimer’s and other forms of dementia before they can obtain or renew their licenses. Of note to probate law, it also requires physicians who have diagnosed Alzheimer’s in a patient to inform a family member or legal representative about the diagnosis. Additionally, it mandates that all Massachusetts hospitals, no later than Oct. 1, 2021, develop and put into practice a plan for recognizing and managing patients with dementia.
It’s a challenge for doctors to assess what is normal aging and what might be early signs of Alzheimer’s disease, especially in early onset cases. Often, primary care doctors, who are the first line in diagnosis, don’t have the tools or comfort level with giving a diagnosis that is always fatal.
However, early diagnosis is imperative, said Dr. Brent P. Forester, chief of Massachusetts McLean Hospital’s Division of Geriatric Psychiatry, in an interview with The Boston Globe. In early stages, patients can take medications that can slow the progress of the disease or take part in clinical trials of experimental drugs. And of course, it enables relatives to ensure that the affected individual is kept safe and isn’t left with inappropriate responsibilities, such as managing finances.
And most importantly, Forester said, the family can start educating themselves and take measures to make the patient as comfortable as possible in what may be a protracted illness, lasting a decade or more, marked by progressive decline.
As mentioned above, another provision of the law addresses hospital care. Medical staff are often not equipped to deal with a patient suffering from memory loss, who is being treated for an unrelated condition. Thusly, the staff will ask for medical history and express frustration when simple instructions are not followed. Patients, who may unable to respond and confused, will often lash out and further delve into anxiety, which often leads to prescriptions of antipsychotics and hospital restraints. All of which are unnecessary if the patients are addressed appropriately from the very beginning by everyone on staff.
According to The Boston Globe article, Margaret Foley, director of care management at Emerson Hospital in Concord, plans to post in each patient room a purple sheet giving staff information to help them interact with dementia patients. The sheet will list such items as the patient’s nickname, her pet’s name, her past, what makes her anxious, and what calms her down.
The hospital is also looking at ways to identify dementia patients when they arrive in the emergency room and find the best location for them, away from distressing noises.
Of course, bigger challenges lie ahead, but also wonderful changes in the way that dementia patients are treated in hospital. With the number of dementia diagnoses expected to climb, the aim is that in the future hospitals will be designed with dementia patients in mind, giving thought to designing rooms with lighting, colors, bathroom configurations and other features that would keep patients more comfortable.
Massachusetts is clearly at the forefront with this kind of law. It’s the hope that other states will follow suit – reducing the trauma for patients and their families for years to come.