Ideas. Lessons Learned, and Occasionally, Opinions
There is so very much we don’t understand about dementia. Yet every study contributes valuable information that may be crucial in the future as we work to develop prevention and cure. Recently, there were two developments – one on sense of smell and one on personality changes - to which you can alert your clients.
Regarding smell, scientists studied several factors in reasonably healthy people and then followed them for five years to see who developed dementia. They found that when combined with baseline cognitive function at the start, the most important factor was sense of smell. They specifically studied five scents – orange, leather, peppermint, rose, and fish. The greater number of scents that created difficulty and the more poorly a person could discern these smells, the more likely they were to exhibit dementia five years later. Researchers noted that this can’t be relied on as a singular test, but rather as a realization that sensory function is closely related to brain function, and may be among the first areas to exhibit deficiencies.
Another study focused on the long-recognized fact that personality changes are an early sign of Alzheimer’s disease, especially becoming uncharacteristically angry, aggressive, paranoid, or inappropriate. Now researchers have developed a 34-question quiz that can help determine the breadth and depth of behavioral changes, and they are proposing an intermediate diagnosis of mild behavioral impairment. You can see the quiz here. Note that these changes should persist for 6 months and be fundamental changes in behavior in order to indicate problems.
An older test, developed in 2014 by The Ohio State University Wexner Medical Center, is called the SAGE test. You can download a copy here and take the test. Then take the results to your doctor for evaluation and to see whether further tests are justified.
These are all items that you can include in your newsletters for your clients. Let them know you are keeping up to date with this growing issue. Guide them through every transition of their lives.
Imagine a scenario: In the course of a regularly scheduled meeting, you notice that your normally astute and proper client has grown visibly thinner and isn’t dressed to the usual standard. You also observe disturbing memory lapses and mental mistakes, including trouble understanding the concepts you explain.
You express concern, ask the client about it, and encourage him or her to make an appointment for evaluation or medical assistance, but then what? Can you call a family member? How do you avoid violating privacy and confidentiality while still taking action you believe is in your client’s best interest?
There is a simple but highly effective way to resolve this dilemma that goes one step farther than the usual emergency contact forms that are standard issue in business: Ensure that each of your clients signs a Diminishing Capacity LetterTM. A simple template is as follows:
“I, [name], give [your name(s); company name; location] permission to call the following people in case of illness, emergency, or if they suspect any diminishment in my physical, cognitive, mental, or psychological capacity.”
The form then has space to list at least three people, with their name, address, relationship to the client, and contact information. Your client signs it, preferably in the presence of a notary public, who dates and notarizes the document. Every year, you revisit the form to see whether names or items of contact information need updating.
Once the Diminishing Capacity Letter is in place, you no longer need to worry about violating privacy or confidentiality. The client has explicitly given you permission to call specific people, not just for emergencies or medical illness, but also if you are concerned about their cognitive or mental state.
Making the Call
When you call, remember not to make a diagnosis, i.e. “I think your mom might be heading toward dementia.” While it is typical to think diminished capacity is related to aging or dementia, remember that there are other reasons for cognitive difficulty that have nothing to do with dementia, such as interactions of medications, infections, a vitamin B12 deficiency, emotional trauma or grief, and more. Regardless of the cause, it is always important to first talk to your client and then to follow up with their contacts if the client does not respond promptly and appropriately.
So rather than suggest a cause, simply list what you see. “I am calling to let you know that I have observed some disturbing signs when I am in contact with your mom. She asked the same question three times in 25 minutes, even though I’d answered it each time, and had trouble following a conversation that normally would be no problem. She also had to think for several minutes before she remembered her grandson’s name. I want you to be aware of what I’m seeing in case you or other family members observe similar things, and you may wish to get her to a doctor for evaluation of the cause.”
Be sure to document your observations and the phone call itself as evidence that you are doing everything you can to protect your client in all aspects of life. Be a wise guide for your clients in all the situations they may encounter.
One relatively less labor-intensive way to support grieving clients is to create a dedicated page on your website to share online resources on coping with loss. We’ve collected some links that we recommend to get you started on your list.
Alliance of Hope provides healing support for people coping with the shock, excruciating grief and complex emotions that accompany the loss of a loved one to suicide. Also, check out The American Foundation for Suicide Prevention. They provide education and prevention, but also provide support groups and after-care when a suicide occurs.
The Trevor Project is designed for the LGTBQ community. It focuses on prevention, providing a suicide hotline, as well as information, education, and support after a suicide occurs. Suicide rates are much higher in this community.
Grief Share provides in-person support meetings in a number of places around the country. They describe themselves as “a friendly, caring group of people who will walk alongside you through one of life’s most difficult experiences.” They offer the option of a daily “encouragement email”.
The Caring App is aimed at caregivers who provide home care to family. Whether young or elderly, dementia or other physical or mental conditions, this app serves as a how-to-guide that recommends high quality, low-cost products, services, and strategies.
Compassionate Friends is a national organization organizes support groups around the country for parents whose child has died. All leaders have been through it themselves, and the group offers comfort, acknowledgment, and hope.
Family Caregiver Alliance (FCA) an unmoderated email-based support group and participants must register. Many people caring for a loved one who is disabled, ill, or living with dementia, find support and understanding in the conversations with others in similar situations. For support specific to Alzheimer’s, check out the Alzheimer’s Association at www.alz.org
We hope your clients find these resources helpful and healing as they go through their journey, generating gratitude and loyalty to you. If you know of other resources that your clients have benefitted from, please email us at firstname.lastname@example.org and we will be sure to share them.
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.
Too much wisdom is lost every day in this country because we devalue our elders. When we highly value them, and take the time to listen and learn from the wealth of their life experience, it can be eye-opening, informative, and quite a delight for the storyteller and listener alike.
My sister and I recently embarked on a project to capture more of my Mom’s life story before it was lost to us. Over a period of several visits we asked her many things - what it was like growing up in a household with six brothers, what stood out about her Mom’s death from cancer at the too-young age of 52, her happiest and most troublesome memories, how people who knew her as a young woman would describe her, and what she hopes people will remember about her after she dies. Together we laughed, cried, and grew closer. We also learned many things we had never known. For example, we were surprised to find out that she’d had two dogs as a teenager, and she was not very fond of Frank Sinatra, even though all of her friends and classmates swooned over him!
In addition to passing on wisdom and life lessons, these stories are important for another reason. As we age, we are increasingly susceptible to the diseases that cause dementia, including Alzheimer’s disease. When people have Alzheimer’s, they lose their short-term memory first. Family members who gather long-term memories build a way to maintain their relationships, because even if their beloved elder can’t remember what she had for lunch, she may well remember that dog or the kind of music she loved in high school.
So, as you meet with clients to close out the year, encourage them to take time over the holiday season with the older generation, asking for their wisdom and life lessons, and gathering their stories and memories. Your clients will often learn things they never knew before, and may deepen their relationship with parents or grandparents. In the process, they may find themselves wiser, more tolerant, and with greater appreciation for those who comprise their heritage.
Of course, if your clients ARE the older generation, encourage the same thing in reverse. Recommend that they write or record their own memories and stories, along with the wisdom, hard-won lessons, and messages they wish to pass on to their families. The compilation could be a welcome gift of lasting value. Regardless of which direction the information flows, it is an exercise your clients will likely never regret. While you’re at it, perhaps you can do it in your family as well. Give the gift of time, curiosity, memory, and wisdom this holiday season. It costs so little, yet it is priceless.
New FINRA regulations that passed in 2017 will take effect on February 5. One major provision requires every broker-dealer to make a good-faith attempt to keep on file an alternate contact form for every client. This will function somewhat like the medical HIPAA forms, giving permission for a specific person who can be called if the client can’t be reached or there is an emergency. I’m delighted to see this development, as I’ve been calling for this protocol for many years as a way to protect both your clients and your firm.
I believe, however, that the FINRA rule is only a start. As you may recall, I developed a Corgenius Diminishing Capacity LetterTM. It goes beyond the minimum required for compliance with the FINRA rule, since it allows clients to name more than one person plus the powers of attorney and it gives broader permissions for contacting those in the client’s trusted circle when there is a potential problem.
My simple template is as follows:
“I, [client name], give [advisor names] of [company name and location] permission to call my Durable Powers of Attorney and the following people if they suspect any diminishment in my physical, cognitive, mental, or psychological capacity.”
The form then has space to list at least three people, with their names, addresses, relationship to the client, and contact information. Your clients sign and date it, and you keep it in their files. Every year, you revisit the form to see whether names or items of contact information need updating.
With this form, you have greater leeway, as an emergency or inability to reach the client is not the triggering factor. If you have noticed worrisome signs and suspect a problem in any of these areas, you have explicit permission to call others, including those the client designated as having decision-making power over financial and healthcare matters.
In that call, of course, remember not to make a diagnosis, i.e. “I think your mom might have dementia” or “Your dad appears to be in a serious depression.” Instead, list what you see. “I’m calling to let you know I observed some disturbing signs in my appointments with your mom. She asked the same question three times in 25 minutes, even though I’d answered it each time. She has been unable to follow multi-step directions and forgets decisions we made at the last appointment. There may be an underlying medical cause, and I want you to be aware of it so you or other family members can watch for similar things and take appropriate steps. In the meantime, I am contacting my compliance department to make sure we are protecting your mom’s financial well-being in case there is an issue with her capacity.”
Be sure to document your observations and the phone call itself as evidence that you are doing everything you can to protect your client. This may also help you connect to other family members, who see you as a comprehensive advisor who cares about more than just your clients’ money. Be a wise guide for your clients, even in cases of diminished capacity.
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?