Ideas. Lessons Learned, and Occasionally, Opinions
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.
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 I was a young widow, there was no such thing as a support group to help me through. There was no such thing as online resources. There were no retreats for widowed people to share their experience. I sometimes thought I recognized the sadness in another person’s face, but I didn’t dare ask if we had a common thread of grief between us. Despite all the well-intentioned people who loved me, I felt alone and lost. I had to figure out this grief thing by myself and find some way to put the pieces back together, heal, and refashion my life.
No widow should grieve alone -- nor do they have to. While there is now a wide variety of places to help widows get counsel, sympathy and share their feelings, one of the most healing is the non-profit organization Soaring Spirits International. Founded by a young widow, Michele Neff-Hernandez, the group offers Camp Widow®, a weekend this program for widowed persons rebuilding their lives, in different parts of the country as well as a variety of other resources. The value this organization offers is inspiring and I am now a member of their Advisory Board and I teach at their events.
If you have a client who is widowed, I encourage you to tell them about Soaring Spirits. Suggest they chat on its forum, get a pen-pal, read the blog posts of other widowed people, find a regional meeting, check out the long list of recommended resources, register for Camp Widow, gain hope, and know that they are not alone.
And there are other ways you can help, too.
You have the financial expertise to help your clients, now raise the bar in other areas by learning how to do more to support a client through difficult life transitions. Serve your clients well through the toughest times of their lives, and you help them as well as your business.
When a client or colleague receives serious diagnosis or needs to undergo surgery, chemotherapy, or other treatments, people often rally around with support. They offer to bring food, provide rides to doctor’s appointments, watch the kids, etc. While grateful for all the offers, most people are still overwhelmed by trying to keep their network informed of medical progress, juggling responsibilities at work, and coordinating the needed help, all in the midst of the intense emotional and physical drain of the situation.
You can help alleviate that stress. There are several ways you can provide support that is different than what most people do. For example,
Spare your client or colleague the legwork by providing resources like these. Depending on your relationship, you may even wish to participate in offering practical help to the family. Regardless, let them know you care by providing concrete assistance at a tough time
We have an unprecedented crisis happening in our country. Every day, 115 people die of an opioid overdose. From 1999 to 2016, 350,000 people have died. A recent survey by the AP and Center for Public Affairs Research found that 1 in 10 Americans know a relative or close family member who died of an opioid overdose. In April, the Surgeon General issued the first national health advisory since 2005, urging families and friends of addicts to carry naloxone, the drug that can reverse the acute effects of an overdose and give a greater chance of survival.
Clearly, we have a huge public health problem with more people dying per day due to opioids than were dying of AIDS at the height of that epidemic. Just as we found the will and resources to combat AIDS over 30 years ago, we need to do it now for opioids.
In addition to scope, there is another aspect of these two epidemics that is similar. When people died of AIDS, their family members were often reluctant to tell others the cause of death because of the stigma. The same is true with the opioid crisis, leaving families unsupported and isolated. It’s bad enough that our society knows so little about how to effectively support the survivors of a loved one’s death; with a stigmatized death, the situation is exponentially worse.
Many people don’t realize that opioid addicts generally begin taking the drugs to relieve intense pain from a medical condition, not to get high. Yet one of the ways opioids work is to increase the levels of dopamine in the body, resulting in a feeling of euphoria while relieving some of the pain. Even if all the pain is not relieved, that which remains seems tolerable because of the underlying “high”.
Addiction begins when the drug rewires the reward centers of the brain, causing the person to perceive anything less than the euphoria as being painful and creating a physiological craving for more of the drug. Tolerance requires higher doses, the euphoria increases, the drug continues to affect the brain, and the addict sinks into an ever-deepening need for opioids just to feel normal. For those who try to reduce or quit, withdrawal symptoms are intense, and they often give up, relapsing into drug abuse to eliminate the pain. It reaches the point where an addict will do anything to get the next hit.
How to Help
After an overdose death, the grief is profound. The family loses a beloved family member. They lose the future they hoped for with that person and the unique place that person held in the family structure. They have exhausted themselves with worry and attempts to help. There are feelings of guilt and inadequacy that the loved one couldn’t be saved. These reactions are combined with anger at the lack of resources for addiction and resentment towards the addict who wasn’t able to kick the habit despite whatever help the family could offer. At the same time, rather than the outpouring of support they would receive if their loved one died of something like cancer, the support is muted, tentative, or absent, replaced by judgment or simply the would-be comforter’s inability to know what to say.
Here are a few suggestions on how you can help a client, friend or family member dealing with this kind of loss:
At the opening session, I sat with over 300 other widowed people. The diversity amazed me – all ages, cultures, sexual orientations, and length of marriage (including several who were engaged or unmarried but committed to being together for life). I saw significant numbers in their 20’s, along with the grey-crested faces of older age. Some had young children, many had older kids or adult children, while others had no children at all. For some, the death was sudden, unexpected, and tragic; for others, it had been a long struggle with cancer or illness that finally took their spouse. A few were widowed only weeks before they came; for others it had been months or years.
Throughout the weekend, tissue boxes were everywhere and, for some, tears sometimes flowed like rain, as one expects and welcomes without reservation. But there were also lots of hugs, and it was anything but a sorrowful cry-fest. In fact, I’ve never been around so many widowed people and had so much fun! People were eager to share their stories and honor the love they had, but their main purpose was to gain wisdom and support as they grappled with the challenges of building lives that would be very different from what they had planned. It was comfortable and comforting, and people walked away with new friends plus a good dose of hope.
All of this is made possible by a non-profit organization titled Soaring Spirits International. Founded by a determined young widow, Michele Neff-Hernandez, the group now offers three Camp Widow® events a year (Tampa, San Diego, and Toronto), online support, a packet for newly widowed people, and a host of other resources. I am so impressed with this organization that I am now a member of the Advisory Board.
In my professional and personal spheres, I work to shine a light into the darkness of grief, to educate those who want to support the people they care about when they are grieving, and to help people heal. That is also the mission of Soaring Spirits. If you have widowed clients – men or women, young or old – feel confident in referring them to www.soaringspirits.org for resources and help. Perhaps I’ll even see them at an upcoming Camp Widow ® weekend!
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.