Ideas. Lessons Learned, and Occasionally, Opinions
Beta amyloid plaques, or build-up of “sticky” proteins on the neurons, is one characteristic of the disease. Not all people who have beta amyloid plaques have Alzheimer’s, but every person with Alzheimer’s has beta amyloid plaques. With the aid of improved brain scan techniques that more accurately detect them plaques, one focus of research is to prevent, slow, or dissolve the proteins.
Many antibodies have been in clinical trials for some time. Crenezumab, for instance, is showing some promise in early-onset Alzheimer’s. But recently another antibody called Solanezumab became the first one proven to show definitive results in slowing beta amyloid plaque build-up on neurons, at least temporarily.
We are still a long way from a cure. There is no drug or treatment, including Solanezumab, which is capable of preventing or curing Alzheimer’s. All we can do is slow the progression of symptoms for anywhere from a few months to a few years. There is no “fix”. Sooner or later the disease takes over again. Yet every step helps.
What can you do?
When Bill Gates pledged $100 million for research on controlling or curing Alzheimer’s disease in our lifetimes, it focused much-needed attention on this dread disease. At Corgenius, when we teach about preparing for it, signs to watch for, and protocols to follow, we often ask the audience how many have a family member affected by Alzheimer’s. Well over half of the hands in the room go up; often it’s nearly unanimous.
Statistically, 1 in 8 people aged 65 and above have Alzheimer’s disease. Every five years after the 65th birthday the chance of diagnosis doubles. Nearly half of people at age 85 have Alzheimer’s, and one of every three seniors dies with the illness. This epidemic has profound implications for all of us, and especially for financial advisors, who are charged with guiding clients through their elder years in ways that protect their best interests and their financial viability. Here are some resources to help.
For your own education: Our vote for the best recent resource is “In Pursuit of Memory: The Fight Against Alzheimer’s” by Joseph Jebelli. This British neuroscientist has carefully crafted an understandable and comprehensive examination of the history of the disease, causes and characteristics, past and current research, and currently available treatment options. He details the major drug testing failures in the past several years, but ends with hope that in 10 years we reduce Alzheimer’s to a manageable chronic disease like diabetes rather than the debilitating fatal illness is currently is. If you want the best education on the subject and if you appreciated “The Emperor of All Maladies” (which was published in 2010 and examined cancer in the same way), this book is for you.
For your clients with a diagnosis in the family: “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss” by Nancy Mace and Peter Rabins is a comprehensive listing of what to expect from someone with Alzheimer’s disease along with a wealth of information, tips, skills, and language. The authors incorporate humor, compassion, and realism as they help caregivers and family members cope with the progression of cognitive and physical diminishment while maintaining as much communication and life as possible. Give it to clients and their families as a reliable and highly practical guide.
For everyone: The Alzheimer’s Association. This dedicated organization offers a wealth of resources and services for anyone concerned about or affected by Alzheimer’s disease. They provide in-home care consults, tracking programs for those who wander, free brochures you can provide in your office, a trial match so clients or their family members can be enrolled in appropriate clinical trials, and more. Check out what your local chapter has to offer.
One hallmark of the illness is sticky beta-amyloid protein plaques that build up on neurons and kill brain cells. Everyone who has Alzheimer’s disease has these plaques all over the brain, which can be detected with specialized brain scans.
When the plaques were discovered, scientists assumed beta-amyloid caused Alzheimer’s and focused much of their research on preventing or reducing those plaques. However, they learned that everyone with Alzheimer’s disease has significant beta-amyloid plaques, yet many people have significant beta-amyloid plaques but do not have the disease. Also, billions of dollars and many clinical trials developed drugs that stop beta-amyloid buildup or dissolve plaques already present. But not a single one of those drugs improved the cognitive abilities of the patients who received them, even when the drugs successfully treated the plaques. Frustrated with drugs aimed at beta-amyloid, the focus of research is now shifting to other factors—inflammation, prion seeding, genetics, blood factors, the tau protein, and more.
In the midst of all this, the splashy news is that within a few years clinicians will be able to test a person’s blood for beta-amyloid to assess if they may be developing plaques in their brain. This means that instead of expensive and specialized brain scans that can only detect levels of plaques after they are clearly present, there will be an easy and accessible way to determine levels of the protein much earlier. The hope is that people who have blood levels indicating high risk, even if they are asymptomatic, can enter clinical trials earlier and may not develop the disease.
Do you see how the logic is off? Since even someone with high levels of beta-amyloid in the brain may not ever develop Alzheimer’s disease, how can we judge a drug’s success? If that person doesn’t develop Alzheimer’s while taking a particular drug, does that mean the drug works, or does it just mean they weren’t going to develop the disease in the first place? In other words, as a stand-alone diagnostic tool, it isn’t reliable.
Instead, we believe the main benefit of a blood test like this is to confirm a diagnosis of Alzheimer’s. When a patient has the neurological and cognitive deficiencies associated with Alzheimer’s, and then the blood test determines high levels of beta-amyloid in the brain, the diagnosis can be more certain.
Why does this matter? When we teach at conferences and events and ask how many advisors are facing Alzheimer’s among their clients and client family members, almost every hand in the room goes up. Providing your clients with clarity on the news articles they are reading about the disease establishes you as a knowledgeable, cutting-edge advisor they can trust to guide them wisely.
For future success, it is therefore crucial that financial professionals educate themselves so they understand the grief process and are equipped to communicate with and support widows. Use these five easy starting points to improve your service to widowed women:
These are just a few of the concepts to put into practice so you can serve the ever-growing numbers of widowed women who will cross your path.
There is recent research on Alzheimer’s disease that you may wish to share with your clients. Scientists have isolated a new variation of dementia that mimics Alzheimer’s disease. They call it LATE, because it doesn’t manifest itself until people are in their 80’s. Yet it is far more widespread than they expected. In fact, they estimate that up to one-quarter of dementia cases at age 85 are LATE dementia, not Alzheimer’s per se.
The similarities in the two result from the fact that both types of dementia target the hippocampus first. That is the area of the brain that sends short-term experience into long-term memory. With both Alzheimer’s and LATE, that stops happening. That is why someone with Alzheimer’s or LATE may remember something from 40 years ago better than they remember what they had for lunch.
Despite those similarities, however, the underlying features are different. Alzheimer’s is characterized by two proteins – beta amyloid (which builds up in sticky plaques on the neurons) and tau (which becomes tangled strands within the nerve cells). LATE is characterized by a different protein – TDP-43 – that also kills brain cells, but by a different mechanism.
Why does this matter? First, we have a set of drugs that are proven to temporarily slow the progression of Alzheimer’s symptoms, but they may do nothing at all for LATE. Secondly, most of the drugs researched and tested on patients in the past decade target beta amyloid, and all of them have failed to improve cognition even if they successfully decrease that protein. Now that a different protein has been identified, researchers have another target on which to focus. Perhaps cases of LATE dementia can be more successfully treated or even cured. In the process, we may learn more about dementia in general that can aid in treatments for other forms, especially the very similar Alzheimer’s disease.
This is all preliminary. Yet if you alert your clients that you are aware of the latest research, you distinguish yourself as an advisor who is on top of the game and has the clients’ best interests in mind in every way, not just financially. Our hope is that someday, dementia will become a treatable chronic condition like present-day hypertension or diabetes. In the meantime, let your clients know you serve them exceptionally well!
When your client dies, who owns the pictures on their Facebook page? Who has control of their electronic bill-payment sites or Bitcoin account? Who is responsible for shutting down or memorializing social media sites? Digital rights ownership is an increasingly complex issue as our online lives continue to expand. Are your clients prepared to safeguard these assets after they die?
If your client does nothing in advance, disposition of digital assets goes according to the TOS (terms of service) of each individual site, which vary widely. In fact, many survivors have been shocked by sites that do not allow transfer of ownership or access upon death, or that complicate the settlement of the estate. Rules have been more flexible for minors in states that allow parents or guardians to manage deceased children’s accounts. Yet some families have had to get court orders to obtain rights to their loved one’s digital accounts, a process that can take months or years.
The Fiduciary Access to Digital Assets Act
Several states began to take action by passing a Fiduciary Access to Digital Assets Act. This gave the executor access to all digital accounts and allowed digital assets to pass according to the decedent’s will. However, it ran into legal trouble based on privacy. Some people, for instance, did not want their executor to see highly personal information such as their history of emails and texts, and lawsuits ensued.
The acts were gradually amended to resolve these issues until finally, in 2017, states began passing the Revised Uniform Fiduciary Access to Digital Assets Act (RUFADAA). (http://www.uniformlaws.org/Act.aspx?title=Fiduciary%20Access%20to%20Digital%20Assets%20Act,%20Revised%20(2015). Forty states have now made it law, and it’s pending in five more plus Washington D.C. It will soon be nationwide. What does this mean for financial advisors and estate planners? Digital property now needs to be part of the estate planning process, and you need to help your clients prepare now for their digital afterlife.
Access to Digital Assets
RUFADAA allows the executor or another fiduciary appointed in the will to have access to any electronic or digital sites “necessary” to settle the estate. The necessary sites are largely those involving finances or financial assets, including shopping accounts, automatic bill-paying, online banking, etc. That very narrow provision protects privacy, as it does not allow the executor to access texts, emails, and more private information.
Yet RUFADAA allows for further permissions if the decedent clearly states so in the will. These permissions can cover desires such as whether a Facebook page is closed or maintained as a memorial page, whether a blog is deleted or archived and kept, and all your client’s other desires for digital sites.
Sites that fall under RUFADAA are required to give access to the named fiduciary or executor, but that process can take time and involves proving to the site that the client died. If usernames and passwords are accessible immediately, airline miles can be transferred, sites can be closed, and other desired actions can happen with less complication. It is important to note, though, that clients should never include usernames and passwords in the will, as it becomes a public document upon death.
Your Two-Step Process
There are two crucial steps to take with your clients:
1. Ensure the will includes your client’s intent for the executor or another named fiduciary to have access to digital accounts, how broad those permissions are, and your client’s wishes for disposition. Example: Can the named person see all the tweets, emails, and private personal information, or does access only extend to closing such accounts? What are your client’s desires for each site or each category of sites?
2. Ensure that your client completes another document giving more specific instructions (i.e. to whom they wish to transfer their airline miles and hotel points), and including usernames and passwords. This document should be signed, dated, and preferably notarized, and kept with the will so instructions are accessible to the executor.
To facilitate this, recommend that clients use one of the available services (i.e. LassPass.com) that generate secure passwords for every site and store the entire array of information necessary for access. The document then only needs to include the master password to that service, plus instructions for any two-factor authentication, so the named fiduciary can easily open the entire vault of usernames and passwords. Since the password storage service is dynamic, it also allows clients to maintain security by changing passwords regularly, without having to re-do the document.
Instead of allowing individual sites to determine disposition, take these steps to keep your clients in control and remove at least some post-death headaches. They will never forget it!
If you find yourself at a loss for words, you are not alone. There has never been a financial advisor’s guide that explains what to say (or what not to say) and how to handle these potentially challenging and professionally awkward situations. When I became a 25-year-old widow with a 7-month-old baby boy, believe me, no one knew the right thing to do or say around me, including the financial professionals I needed to rely on. And I’ve heard the same stories countless times since then, from more than 2000 grieving people. Instead, what most professionals do is either ignore the painful reality and stick to business, or pick up what other people say and inadvertently perpetuate the mistakes.
You can do better than that. You can learn to do the right things and offer genuine comfort and support, no matter what your clients go through.
However, as I continue to get feedback from research and in my support groups, I find that many grieving people don’t appreciate it. They especially resent it when, as sometimes happens, the words are dripping with drama – “I can’t IMAGINE what this is like for you!” Yet even if you take care not to go over the top when you say it, you risk isolating people. They hear your implication that they are so crazy or outside the realm of normalcy that no one else can even imagine what it’s like. And since no one can imagine it, no one can be there and help. It builds a moat around your grieving client that can’t be crossed.
Besides, it ultimately is not true. We have very active emotional imaginations. Most of us can indeed imagine something of the pain and loss, the empty chair, the unanswered phone. In fact, imagining it is one key to building empathy, which is core to who we are as human beings and serves a crucial function in binding us together in mutually helpful ways.
So if you aren’t supposed to say “I know how you feel” or “I can’t imagine what you’re going through”, what do you say instead? Consider asking one of the following questions, modified for the situation if necessary:
Never assume you know what someone else is experiencing. Instead, ask open-ended questions and allow a grieving client to tell you, and then let your imagination take you as close as possible. That allows you to respond more effectively and serve your clients in ways others don’t know how to do.
When you know how to walk your clients through the toughest times of life, you build trust, loyalty, and referrals.