By Elissa Meyer
This article is a compilation of information presented at Minnesota CLE on February 3, 2020, entitled “A Lawyer’s Guide to Alzheimer’s and Dementia.” 1
On February 3, 2020, Nancy Kiskis, an estate planning attorney who retired from Moss & Barnett at the end of December 2019, presented at a CLE seminar on Alzheimer’s2 and dementia. Nancy did not present on substantive law topics related to estate planning—although she worked at the firm and practiced in that area for more than 45 years. Instead, she told a compelling personal story: her family’s journey following her husband Lenny’s diagnosis with early onset Alzheimer’s in June 2005. Nancy’s talk was brave, complex, and moving, and it received a standing ovation (the first I had ever seen at a CLE). It also exemplified part of the point of what follows here: lawyers confront Alzheimer’s and dementia not just in professional life, but in personal life, too. It’s an obvious point, perhaps, but because of a tendency to separate work from home, it is important to reframe a holistic view of the issue, and to consider how we can all help address it and support each other, together.
One of Nancy’s takeaway recommendations from her experience was that “most people don’t know what Alzheimer’s means—so be prepared to educate them.” This short summary serves to pass on a small amount of education, outlining 10 key aspects to help inform a more “dementia-capable”3 profession.
1. Dementia is general; Alzheimer’s is a specific type.
According to the Alzheimer’s Association, there are 11 different types of dementia, with Alzheimer’s being the leading cause.4 More than five million people in the United States are currently living with Alzheimer’s type dementia. It is projected this number will triple by the year 2050 if no cure or other preventive treatment is introduced. Given these statistics, it is understandable that most people have heard of Alzheimer’s but many likely do not know what it means. As a starting point, it is important to understand what dementia—and Alzheimer’s type dementia—is (and is not), especially in comparison to the typical processes of the aging brain.
A typical aging brain shrinks, loses structure and function, and becomes more susceptible to inflammation and other disease. Normal signs of aging include impaired senses (vision, hearing, smell), impaired mobility (balance, falls, etc.), and potentially some episodic memory loss. In contrast, dementia means loss of cognitive power caused by diseases or injuries. It is a behavioral diagnosis, based on changes in cognitive behavior. Alzheimer’s, a specific degenerative brain disease, is the most common cause of dementia.
2. Alzheimer’s is differentiated by its impact on memory in the earliest stages.
Dementia of the Alzheimer’s type (also known as DAT) is diagnosed when someone develops and displays multiple cognitive deficiencies, demonstrated by both: (a) memory impairment (amnesia) and (b) one or more of the following: loss of word-finding (aphasia), problems dressing (apraxia), inability to recognize faces (agnosia), or other disturbances in executive functioning. Different from other types of dementia, Alzheimer’s hits memory first.
3. Clients may need assistance navigating bureaucracy.
Professionally, there are typical practice areas where lawyers encounter clients who may have dementia: estate planning, elder law, estate litigation, family law, social security disability law, and more. But any lawyer may be impacted by dementia professionally or personally, or may help refer friends, families, or colleagues seeking assistance. Impacted individuals or families may look for a lawyer especially when they need support finding ways to pay for care after a diagnosis. Government benefit programs paying for care and services—namely Medicare, Medicaid (Medical Assistance in Minnesota), or Social Security Disability Income—may be available. The rules, benefits, and administration of these programs are complex; the rules all have exceptions, and both the rules and the exceptions change frequently. A lawyer who first interfaces with a client around questions of benefits and paying for care is in a unique position to help connect the client, and his or her family, to other resources, services, and support.
4. Dementia can be hard to detect, and incapacity is not a singular, straightforward determination.
For attorneys who work with aging clients or aging colleagues, there are signs to look for that may indicate diminished capacity due to dementia. But the definition of diminished capacity varies, and the standards depend on the nature of the particular transaction or decision in question. For example, there are distinct standards for contractual capacity, capacity to make a will, capacity to make a gift, to marry, or to testify, etc. As an attorney starts to notice changes in client or colleague behavior, some questions to consider might be the following: How is the person expressing choices? Does the person seem to understand relevant information in context? Does the person appreciate the significance of key information? Can the person reason and logically weigh options?
These can be difficult things to assess, especially because at the onset of disease there may be significant overlap with normal age-related cognitive changes. Additionally, it is natural for each of us to try to cover up deficiencies, including memory loss—this is especially true and possible among individuals with high verbal IQ and social skills. So, where lawyers have real, founded concerns about changes in someone’s cognitive function, including their own, the key points are to reach out with care and engage knowledgeable professionals to help in the assessment process. While there are resources outside the legal profession to aid in the assessment of clients, we have our own excellent resource: Lawyers Concerned for Lawyers.5
LCL offers free, confidential services every minute of every day for law students, attorneys, judges, and their immediate family members. Working with Sand Creek, LCL provides professional counseling. And LCL has confidential, individual or group services to help you or someone you know deal with the many stresses and demands of the legal profession.
5. Re-read the Rules of Professional Conduct.
Minnesota Rule of Professional Conduct 1.14 governs how a lawyer works with a client with diminished capacity. The comments to the rule are particularly instructive and address varying aspects of the representation. Any lawyer who has not visited the rule lately would likely benefit from a refresher.
6. Legal tools to help preserve autonomy and independence.
Many tools are available to help individuals and families impacted by dementia make decisions and meet legal needs, without necessarily having to resort to guardianship or conservatorship. Durable powers of attorney and healthcare directives are important elements to understand and put into place. In addition to a healthcare directive, a Provider Order for Life-Sustaining Treatment (POLST) may be useful. A POLST records an individual’s wishes for medical treatment and is prepared and signed-off by a healthcare provider. There is also growing movement toward “supported decision making” as a less-restrictive alternative to guardianship.6 These tools are best utilized in the early stages following diagnosis—in other words, be prepared for loss of legal capacity by understanding available options and putting a plan in place for how an individual may desire to use them.
7. Ask yourself, “Am I an Ageist?”
It is easy to want to respond quickly “no” to this question. However, give it a little more self-inquiry. Our culture has implicit biases in how we treat aging and older individuals. There can be a reversion to child-like dependence and, therefore child-like treatment. But remember the differences between an adult who is becoming more vulnerable and a child—they do not have the same lived experience. Be curious. Cultivate kindness and patience. Remember each of us is aging all the time and, if we are lucky, we will all one day be “elderly.”
8. Our aging profession.
Nearly 65 percent of current equity partners in law firms will achieve “retirement age” over the next decade.7 Because our profession is self-regulating, there is little guidance for how and when lawyers should retire; no clear rule about when to stop practicing law; no requirement for succession or continuity planning; an awkward dynamic of how lawyers should approach others with concerns; and too-often an isolation of solo attorneys. Of course, there are even more concepts inherent in the way our profession practices its craft. Senior lawyers not only have a wealth of knowledge and experience to share with younger lawyers but also an increasing risk for declining physical and mental capacity, and therefore an increasing risk for professional responsibility and ethical missteps. As a profession, it is incumbent upon each of us to participate in, guide, and support the transition of older lawyers.
9. Caregivers, grief, and stress.
The Alzheimer’s Association estimates 16.1 million people in the United States provide care to someone with dementia.8 The effects of this caregiving are significant, hitting financial, emotional, physical, and mental realms—and they are undoubtedly amplified by the grief and loss associated with having a loved-one struggling with dementia. Under this stress, caregivers are encouraged to take care and find supportive resources—a list of a few national resources includes The Alzheimer’s Association, The National Institute on Aging, the National Academy of Elder Law Attorneys, AARP, CaringInfo/National Hospice and Palliative Care Organization, and AgingCare posts on www.agingcare.com. In addition, as mentioned above, LCL provides immediate and local services for attorneys and their family members.
10. Share stories and information, offer and accept help.
When a client or personal connection is first diagnosed with dementia, there will be many questions about what to do next. It can feel overwhelming, scary, and hopeless. Being more informed will help each of us to provide support for those we know in need. All lawyers can help be ambassadors of this connection—sharing knowledge and information—even if it is just a little bit. Each of us has a role in establishing a dementia-capable profession.
Elissa Meyer currently works in professional development and marketing at Dorsey & Whitney. From late 2014 to early 2020, she was a program attorney at Minnesota Continuing Legal Education, where, among other things, she collaborated with colleagues and practicing attorneys on seminars and conferences related to estate planning and elder law, including the annual Probate and Trust Law Section Conference, annual Elder Law Institute, and most recently the program, A Lawyer’s Guide to Alzheimer’s & Dementia.
Notes
1 A Lawyer’s Guide to Alzheimer’s & Dementia was held at the Minnesota CLE Conference Center on Feb. 3, 2020. I would like to thank the generous and talented faculty at the program for sharing their insight. Their names are listed in the program brochure available at www.minncle.org/materials/seminars/309520.pdf. The information shared in this article comes from the various speakers at the CLE, as well as other sources.
2 Although many people refer to this disease by its full name “Alzheimer’s Disease,” the Alzheimer’s Association refers to it simply as “Alzheimer’s” so that is the way it will be identified in this article.
3 “Dementia-capable” lawyers or profession is not an original term. The American Bar Association has complied an electronic library of resources and research for legal professionals, which includes reference to a training conducted by the Hawaii Bar Association in February 2015, titled Developing Dementia Capable Legal Professionals. It is not clear where the term originated, but it is used here to keep the concept moving forward.
4 https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia (accessed Mar. 10, 2020).
5 https://www.mnlcl.org/ (accessed Mar. 10, 2020).
6 Proposed Minn. Stat. §524.5-102, subd. 23, outlines a definition of Supported Decision Making. It has not yet been enacted into law.
7 This statistic was taken from the presentation on Feb. 3, 2020 by Joan Bibelhausen, of Lawyers Concerned for Lawyers, and Binh Tuong, of the Office of Lawyers Professional Responsibility, titled “The Path to Lawyer Well-Being: Supporting the Mental Health and Transition of Older Adults.” “Retirement age” was not, however, defined by a specific age.
8 This statistic was taken from the presentation on Feb. 3, 2020 by Joseph E. Gaugler, PhD, Professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging and Director, Minnesota Center for Aging Research and Education at the University of Minnesota School of Public Health. His talk was titled “Working with and Supporting Families and Caregivers: Tips for Lawyers.”