In a March 19 article in Neurology Today, writer Gina Shaw laid out great tips for when healthcare professionals have to break bad news to people from more diverse backgrounds – several neurologists discussed their lessons learned when having to deliver diagnoses of brain tumor or brain death. The situation is not so different when we have to face a patient or family surprised by the diagnosis of dementia. I appreciated how the tips were broken down so operationally. This is hard to do around such an emotional event, but it’s important to remain aware of these facets to allow space for a meaningful exchange of information and management of expectations:
Make listening a priority. Dr. Nicte Mejia advised, “Challenging conversations require ‘cultural humility’: opening up your ears, eyes and heart to listen with curiosity and learn about people’s value system, belief, and preferences.”
Prepare for the conversation in advance [I always did better if I could use the chart to remind myself what I’d said before about differential diagnosis, who was present at the prior appointment and whether there were any obviously sensitive topics for either the patient or someone else in his inner circle.]
Avoid making assumptions [Really! There’s no quicker way to lose trust! Lay out the options so they can make choices, even if they ask for your help to come to a conclusion]
Acknowledge historical realities. [yes, they do mean Tuskegee and Henrietta Lacks’ stories]
Don’t hide behind technical terms [If you have any written materials that also address the subject written at a lay person’s reading level, bring them along]
Take time [people perceive that you’re spending more time when you sit down in the room/at the table, even if the actual time elapsed is the same!Body language is universal and important; don’t fold your arms across your chest. Bring your team in with you and make clear what their roles are – who should be the family’s point person for further questions, who does what. Bring business cards so the patient and family don’t have to distract themselves writing down names and contact info]
Remember that it’s not about you [the physician]. [Indeed, sometimes the patient or family needs to have us hear them venting. Keep breathing, listen, and that rush of emotional heat willpass.]
Re the May, 2020, Collaborative Approach for Asian and Pacific Islanders Research and Education Care Registry discussion, I think it’s safer to say at this point that the event will be held online and not as a physical gathering!
Barriers to achieving the goal of keeping hands, face and full body clean when a person:
• no longer remembers to engage in daily tasks related to personal care,
• can no longer remember why it is important,
• can no longer remember how to do these tasks in the right order,
• never considered hand washing or personal hygiene a priority in the past,
• seriously objects to doing what needs to be done now or
• associates personal hygiene with negative experiences.
Then she gives tips on how to prompt successfully, help wayfind to sinks and soap, or compensate for those who are not physically able to wash their hands for 20 seconds at a time! Putting up an entertaining poster near the bathroom sink (see at left if you haven’t already seen this on social media) might make it fun.
Calling all stakeholders in Asian and Pacific Islander communities who are supportive of dementia-related care and outreach. Meeting in May in Northern California, but you may attend online!
Register for the first annual CARE Brain Trust meeting in Northern California! This is a free event that will take place on
Monday, May 4, 2020, 11am-2:00pm,
Vietnamese American Cultural Center
2072 Lucretia Ave, San Jose, CA 95122
The dual purpose of the CARE Brain Trust meeting is to a) To learn about the Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) registry; b) examine factors that either impede or facilitate community involvement in research from the perspectives of community and research partners; and c) develop new collaborative partnerships between community and research partners that will include the use of the CARE research registry.
11am-12pm: Introduction to CARE (first hour will be live-streamed; contact CARE if you would like to join virtually)
12pm – 1pm: Networking lunch1pm-2pm: Collaboration opportunities; action plans and next steps
US Senators Pat Toomey (R-PA) and Debbie Stabenow (D-MI) are seeking seeking input from stakeholders – providers, researchers, patients, patient advocacy groups, states, and others – to inform the development of future federal legislation on Alzheimer’s Disease. Please email those comments directly to ALZFeedback@toomey.senate.gov by March 13, 2020
Specific topic areas for requested comments include:
At a glance, this didn’t look like what I recommend caregivers ask themselves (Do you feel safe? Happy? Healthy? Loved?), but on further thought, it’s a great way to operationalize these concepts in the workplace!
Sweden’s Haaksma et al. had access to more than 50,000 unique patients with dementia diagnoses followed over time to give mortality rates. They then created and published a tool to help families understand what the next 3 years might bring.
Note below different tables for men and women. One caveat is that the Charlson Comorbidity Index is related to medical diagnoses present at the time of the dementia diagnosis. That means that diagnoses (e.g., cancer) after the dementia was diagnosed could play a role, but they weren’t used for the projections you see on the right below.
Summary: being older, having dementia for longer, and having several medical conditions don’t bode well for survival, but this study has quantified the contributions of each of those. And it is interesting that the survival probabilities for men and women differ, even when age, MMSE score and Charlson Comorbidity Index score are similar.
I was often asked in my clinic, “How much longer do you think s/he has?” I was never accurate in terms of stating a number of months or years, but families did seem to find it helpful for me to go through milestones that could indicate how close someone might be to the end:
loss of interest in eating may be the beginning of the end stage. Not keeping up with nutritional requirements weakens the body and sets it up for infection that can bring things to an end. That said, patients who are receiving fluids after they stop eating voluntarily can survive for months or even past a year in some cases.
loss of the patient’s communication of needs is another indicator that might precede loss of interest in eating.
inability to swallow exacerbates all of the above: poor nutrition + high risk for pneumonia
spending the majority of the day asleep doesn’t specifically designate time to death, but it can be an indicator that the body is slowing or shutting down, especially if this is starting 8 or more years into illness
Not getting out of bed when awake is a similar sign to the point directly above, but it might be a more advanced version of the same thing
agitation unfortunately is NOT helpful as a predictor for end stage. Agitation can occur at any point in dementia, early vs. late.
studies have shown that having a fever or an outright infection during the end stage will typically signal that the patient has at most 6 months left. Some hospice policies limit stays to 6 months, so this particular indicator has a lot of utility.
terminal lucidity, discussed in a prior post or two, seems to occur about 2 weeks prior to death