The Cognitive Cliff: Planning for Dementia & Testamentary Capacity

The Cognitive Cliff: Planning for Dementia & Testamentary Capacity 

Kaitlyn A. Metscher

Portland, Oregon

Note About Font Choice: Inclusivity starts in our everyday choices. San-serif fonts are considered one of the better typefaces for aging audiences and those who require accessibility software to assist with their reading. Further, the Department of Justice promulgates standards for signage that is consistent with the obligations of the Americans with Disabilities Act (ADA) require applicable signage to be in the San-serif font family[1] – indicating a familiarity with the font family for individuals with disabilities. The author has intentionally chosen Verdana as the font for this paper because it is in the San-serif family, is a common font that is widely available, and provides consistent letter spacing without unnecessary flourishes.  

To learn more about how your font choices affect accessibility please visit:

https://www.section508.gov/develop/fonts-typography/

I.             Introduction

“The world is failing people with dementia, and that hurts all of us. Four years ago, governments agreed a clear set of targets to improve dementia care. But targets alone are not enough. We need concerted action to ensure that all people with dementia are able to live with the support and dignity they deserve.”[2] The United States is on the verge of a crisis. It is projected that there will be an increasing population diagnosed and living with dementia. Over 40% of a sample survey say they are waiting for a ‘health crisis’ before they consider putting together an estate plan.[3] Unfortunately many people wait until later in life to actually complete their estate planning, waiting for a significant diagnosis or accident to demonstrate their own human fallibility before actually engaging in planning. In order to meet people where they are, estate practitioners and legislators must re-evaluate the tools they have to assist persons with diminishing capacity in executing their estate planning documents while simultaneously protecting against allegations of undue influence or lacking testamentary capacity. Supported Decision-Making may provide a mechanism, provide an amplified voice to will-makers with dementia, and provide protections to their supporters who assisted them in evaluating their estate planning options.

First, we will explore the cognitive cliff of expected dementia diagnosis in the United States. Second, shifts in guardianship/conservatorship ethos may provide an example for what estate planning with dementia could look like. Last we will explore how a formalized supported decision-making framework might work in the estate planning context.

II.          The Cognitive Cliff

The average life expectancy in the U.S. increased by 1.1 years from 2021 to 2022.[4] The current life expectancy for adults is 77.5 years[5]. Although life expectancy increased slightly in recent years, it has plateaued with slight fluctuations of 1-2% in recent decades[6]. In the 1970s average life expectancy was 70.8 and in the 1950s: 68.2[7], but in 2018 it was 78.7 – more than it is in 2022 at 77.5 years. The takeaway: life expectancy rates in modern medicine are hovering around the high 70s. While at the same time rates of dementia diagnoses are expected to increase as our population ages and the Boomers, and Generation X reach the monumental ages at which dementia is diagnosed.

Researchers analyzed administrative data from a random sample of Medicare beneficiaries aged 65-100 and their related Part D prescription drug coverage to determine the incidents of a dementia diagnosis by age in the US population. The chart below summarizes the rates of diagnosis among men and women as their age increases.

(Age-specific incidence rates of dementia diagnoses per 1000 person-years for males and females. Data from the Centers for Medicare and Medicaid Services. Incident dementia diagnoses per 1000 person-years with 95% confidence intervals were for males aged 66 (8.3, 8.1–8.4), 80 (33.7, 33.4–34.1), 90 (87.7, 86.5–89.4), and 100 (142.4, 132.7–152.1) years and for females aged 66 (7.2, 7.1–7.2), 80 (35.6, 35.3–35.9), 90 (95.7, 94.9–96.4) and 100 (162.7, 158.5–167.0) years.)[8] © Society of General Internal Medicine 2020

In 2011 the National Alzheimer’s Project Act (“NAPA”) was created by congress to address Dementia related diseases.[9] It is expected that individuals living with Alzheimer’s will more than double its current rates by 2060.[10] Worldwide 55 million people live with dementia, and every year 10 million more are diagnosed.[11] As of 2019 treating and care for those with dementia costs $1.3 Trillion.[12]

III.      Supportive Decision-Making & Protective Proceedings

There has been a shift to give a person who requires assistance more autonomy in their decisions with a focus on education, training, and legal reform. Supportive Decision-Making (“SDM”) “empower[s] persons with disabilities by providing them with help in making their own decisions, rather than simply providing someone to make decisions for them.”[13] SDM has been a central goal of NAPA. Action 3.D.8 of their strategic plan is to “develop a support-decision-making model as an alternative to guardianship”. [14] Their efforts have pushed states to create materials that describe alternatives to a Guardianship/Conservatorship proceeding (which removes or reduces someone’s liberty), and established frameworks for ensuring that the protected person is not deprived of their Due Process rights under the constitution.[15] The Elder Justice Initiative, National Center for State Courts, and Center for Elders and the Courts created the Finding the Right Fit training tool to assist families with identifying what the least restrictive alternative to a court proceeding could be.[16]  This stresses the fundamental idea that a supporter should assist with decision making, but not unilaterally make decisions on behalf of someone else.

Some states have passed laws that enable an adult disabled individual to enter into a Supported Decision-Making Agreement.[17] Washington’s scheme enables the supporter to access, collect, and communicate with institutions and people to assist the disabled person with making decisions.[18] Their statutory form includes space to designate “other matters” that the disabled individual may want assistance with.[19] The stated purpose is to assist decision making regarding daily living.[20]  

Although there is still significant work still remaining, the influx of supported decision-making during a person’s lifetime in regards to their health care, living arrangements, and everyday life is on the rise. One area remains stuck in the 1800s: testamentary capacity.

IV.        Supportive-Decision Making & Testamentary Capacity

To execute a will, or other testamentary-esque documents like a revocable living trust, the will-maker has to be of “sound mind”[21], an idea that was directly exported from England into the United States[22]. The bar for testamentary capacity is low barrier to cross – requiring only a moment of lucidity.[23] Even when the will-maker is under a guardianship the protected person may still sign a will if they meet the test for determining capacity.[24] The test for capacity is that the will-maker (1) understands what they are doing (2) knows how they wish to dispose of their things (3) knows who the natural heirs of their ‘bounty’ are, and (4) understands how the will disposes of their things.[25]

There are a handful of ways to contest an otherwise validly executed will, and they mostly all hinge on the will-maker’s lack of testamentary capacity at the time of the will execution. In a study conducted in two California counties analyzing probate cases they found 62.5% of all will contests are settled.[26] The settlement agreements in all instances substantially benefited the contestant – who in most cases would otherwise inherit significantly less from the estate.[27] Admittedly the sample sizes of this study are small, but demonstrate the problems with will contests: it’s easier on everyone to just reach a monetary agreement. Everyone is a winner, except the will-maker.

Due process requires notice to the will-maker’s intestate heirs, and provides a timeframe in which they can object to the admission of the will to the probate court.[28] This notice and objection period happens after the will-maker has passed away during the probate process. This creates terrible evidentiary conditions because most people don’t know when they are going to pass away and often the will was executed years prior to their death. Meaning, evidence of their state of mind at the time of the will’s execution is subject to hazy memories and incomplete testimonies.

The jurisprudence for testamentary capacity has not substantially changed since it’s inception, and it certainly does not contemplate a SDM framework. In fact, not only has it not kept pace with the more expansive individual autonomy of SDM, in some instances it’s gone backwards. Recently New Jersey amended its guardianship statutes revoking the right of an individual to sign a will if they are the subject of a guardianship proceeding, regardless of their actual testamentary capacity.[29] Confusingly, Oklahoma also passed a statute requiring the judge of the protective proceeding to attest to the execution of a will by a person under a Guardianship, but such attestation does not render a will valid if it would otherwise be invalid.[30]

It is necessary to rethink how those with diminished cognitive abilities exercise one of their most fundamental rights: disposing of their things to the people they care about. Particularly as cognitive impairments due to age increase in the coming decades.

(a)        Ante-Mortem Probate[31]

A handful of states allow the will-maker to take the stand before their death to prove testamentary capacity and obtain a court order that the will is valid.[32] Many of the states enacted such statutes fairly recently, suggesting a resurgence of the idea and perhaps the direction that the states are headed.[33] This method is fine, and uses structures and legal processes that already exist to ensure that the will-maker’s wishes are followed. However, this method runs a much higher risk of causing unnecessary trauma for the will-maker because they must take the stand to prove capacity and if they’d disinherited a family member (like an adult child) they might be subject to that family member mounting a will contest during their lifetime. Particularly when the goal is to support cognitively declining adults in their attempts to exercise their individual autonomy, subjecting them to these court proceedings may (1) encourage them to never voice their desire to change their will or (2) cause more emotional harm than good in the process. A better, and more trauma informed approach might be SDM assisted testamentary will execution. For similar reasons that least restrictive alternative means are encouraged before petitioning to appoint a Guardian or Conservator, we should be looking for less intrusive ways to empower cognitively diminished individuals to execute their wills.  

(b)        Preserving Will-maker’s Intent

Family members are usually the first to notice the subtle changes in their loved one’s cognitive processing.[34] In most instances the first impairment is financial and it fades before other decisions, like choosing a health care proxy or making other values-based decisions.[35] While certainly not a universal experience, it is incredibly common that an adult child, or a spouse not only recognizes the impairment quicker but is best poised to assist the cognitively declining person with their affairs. They also most often have the best grasp on the person’s values and most cherished relationships. It is for this reason that at the first sign of a cognitive decline often the family member will assist the person with putting tools in place to manage their estate.

A form of informal SDM is already practiced in estate planning offices. An attorney representing a person with diminished capacity must (as much as reasonably possible) maintain a normal client-attorney relationship.[36] They may also consult with, and allow other people to participate in the discussion to assist their client.[37]

The presence of other people creates conditions ripe for disinherited individuals to allege undue influence. Most will contests include not only lack of testamentary capacity, but also undue influence claims.[38] Formalizing and documenting the relationship between the person in the room participating in estate planning discussions would reduce the risk of allegations of undue influence on the will-maker, and better preserve the intent of the will-maker. In part the allegations come from the informal, often undocumented (absent attorney notes) nature of this relationship.

I’d suggest there is a possibility of Supported Decision-Making Agreements, as currently enacted, to formalize the relationship of an Adult child assisting their parent with their estate plan for will execution purposes. This is particularly true because daily living includes preparing for one’s inevitable passing.

In any scenario, using the currently enacted statutes, or modifying them to explicitly authorize testamentary assistance would make it explicit that help is being rendered in a non-coercive way. Creating a supported-decision making agreement provides space and explanation to the cognitively diminished individual to set the rules for how they’d like to request help. Model supported decision-making agreements make explicit, in plain language, to the person experiencing cognitive decline that their supporters “help [them] find out more about [their] choices”, “help [them] understand [their] choices so [they] can make a good decision” and “help [them] tell other people about [their] decisions”.[39] It further requires the support to acknowledge that their “job as a supporter is to honor and express [the protected person’s] wishes.” And that “support might include giving [them] information in a way [they] can understand; discuss…”[40]

It best positions the disabled adult, their supporter, and the attorney (if present) to acknowledge the relationships (and duties) each person owes to the others. A Supported Decision-Making Agreement does not replace testamentary capacity, but it does likely create a fiduciary relationship between the supporter and the disabled person.[41] It puts the supporter on notice that they are entering into such an arrangement before the estate planning even begins.

This arrangement also gives permission to the attorney to directly receive information about the disabled person from the supporter[42] and provide transparent information back[43] (subject to professional ethical obligations). Although some attorneys already are comfortable sharing/receiving information from persons other than the will-maker, not all do, and this arrangement would explicitly authorize it. It further cements presumption that the supporter is not exerting undue influence on the will-maker. This is not to say that such an agreement guarantees a benevolent supporter, but it creates clearer bright lines for when assistance turns into coercion.

Creating an explicit agreement further creates evidence that the will-maker requested the supporter’s assistance and knew that they aren’t there to make decisions for them. Tacit arrangements require the attorney to carefully document the relationship (and their file) in anticipation of a potential challenge. There is also some evidence to suggest that by psychically signing an agreement, a person is more likely to exhibit honesty and development a greater sense of integrity in their behavior.[44] SDM agreements make clear the duties owed from the supporter to the disabled person – creating greater autonomy for testamentary decision-making.

V.           Conclusion

NAPA’s Action Item 3.D.4 includes “Improv[ing] the ability of legal services to address the needs of people with Alzheimer’s disease and related dementias. Lead agency: ACL, Partners: NLRC, legal assistance developers.”[45] Access to justice isn’t limited to criminal justice or civil litigation protections. Access begins in our everyday actions. Ordaining a formal process to assist individuals with diminished capacity allows for self-actualization, and best preserves the will-maker’s intent. Progress has been made to transform Guardianship law from something that happens to someone, into a collaborative least restrictive means necessary process. Although not perfect, it serves as an example for ways to increase access to estate planning.

We’ve explored the increasingly concerning future of dementia in America, and the need for near immediate action in our legal processes. We’ve looked at the shifts to include supportive decision-making in protective proceedings, before finally seeing how a similar model could positively assist disabled individuals in their estate planning. I won’t pretend that by statutorily enacting such a scheme we will suddenly increase access to testamentary planning, but it is a step in the right direction. It is a necessary step if we as a society value providing as much liberty and autonomy as we can, particularly to those with diminished capacities.

[1] U.S. Dep't of Justice & U.S. Dep't of Transp., Americans with Disabilities Act (ADA) Standards 703.2.3 (2010, 2006).

[2] World Health Org., World Failing to Address Dementia Challenge (Sept. 2, 2021), https://www.who.int/news/item/02-09-2021-world-failing-to-address-dementia-challenge (last visited October 25, 2024).

[3] Caring.com, Wills and Estate Planning Survey, https://www.caring.com/caregivers/estate-planning/wills-survey/ (last visited Nov. 5, 2024).

[4] Kenneth D. Kochanek et al., Mortality in the United States, 2022, NCHS Data Brief No. 492 (Mar. 2024).

[5] Id.

[6] CDC Nat'l Ctr. for Health Statistics, Mortality Trends in the United States, 1900–2018, https://www.cdc.gov/nchs/data-visualization/mortality-trends/ (last visited Nov. 1, 2024).

[7] Id.

[8] Mark Olfson et al., Age and Incidence of Dementia Diagnosis, 36 J. Gen. Intern. Med. 2167 (2020), https://doi.org/10.1007/s11606-020-05895-y.

[9] U.S. Dep't of Health & Human Servs., National Plan to Address Alzheimer’s Disease: 2023 Update (2023), https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-national-plan (last visited Nov. 3, 2024).

[10] Currently, 6 million live with Alzheimer’s and it’s estimated to be 13 million by 2060 Id.

[11] World Health Org., Dementia (2023), https://www.who.int/news-room/fact-sheets/detail/dementia (last visited Nov. 3, 2024).

[12] Id.

[13] Nina A. Kohn et al., Supported Decision-Making: A Viable Alternative to Guardianship,117 PENN ST. L. REV. 1111, 1113 (2013).

[14] U.S. Dep't of Health & Human Servs., National Plan to Address Alzheimer’s Disease: 2023 Update, pg 96 (2023), https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-national-plan (last visited Nov. 3, 2024).

[15] Rebekah Diller, Legal Capacity for All: Including Older Persons in the

Shift from Adult Guardianship to SupportedDecision-Making,43 FORDHAM URB. L.J. 495, 505 (2016) (exploring the additional notice requirements, and hearing before the appointment of a guardian).

[16] Elders and Courts, Finding the Right Fit (n.d.), https://www.eldersandcourts.org/training/finding-the-right-fit (last visited Nov. 3, 2024).

[17] Wash. Rev. Code § 11.130.705 (2023).

[18] Wash. Rev. Code § 11.130.720 and § 11.130.735 (2023).

[19] Wash. Rev. Code § 11.130.745 (2023).

[20] Wash. Rev. Code § 11.130.710 (2023).

[21] Charles P. Sabatino & Erica Wood, The Conceptualization of Capacity of Older Persons in Western Law, in BEYOND ELDER LAW: NEW DIRECTIONS IN LAW AND AGING 35, 36 (2012).

[22] Greenwood v. Greenwood (1790) 163 Eng. Rep. 930, 931 (KB).

[23] In re Estate of Cook, 231 Ore. 133, 136 (1962). Most states operate under similar rational as stated in Cook.

[24] Harrison v. Rowan, 11 F. Cas. 658 (C.C.D.N.J. 1820); See also: In re Estate of Gentry, 32 Ore. App. 45, 50 (1978).

[25] Hubbard v. Hubbard, 7 Ore. 42, 45 (1879).

[26] Reid Kress Weisbord & David Horton, The Future of Testamentary Capacity, 79 WASH. & LEE L. REV. 609, 648 (2022).

[27] Id. at 649.

[28] Nolan W. Carson, Probate Proceedings—Administration of Decedents' Estates—The Mullane Case and Due Process of Law, 50 MICH. L. REV. 1, 133 (1951).

[29]NJ Rev Stat § 3B:12-27 (2023)

[30]84 OK Stat § 41 (2023)

[31] For an in-depth analysis on this question see Reid Kress Weisbord & David Horton, The Future of Testamentary Capacity, 79 WASH. & LEE L. REV. 609 (2022).

[32] Alaska Stat. § 13.12.545 (2023), AR Code § 28-40-202 (2023), Del. Code Ann. tit. 12, § 1311 (2023), Nev. Rev. Stat. § 30.040(2) (2023), N.H. Rev. Stat. Ann. § 552:18 (2023),  N.C. Gen. Stat. § 28A-2B-1 (2023), N.D. Cent. Code § 30.1-08.1-01 (2023), Ohio Rev. Code Ann. § 5817.02(A) (2019)

[33] ACTEC Foundation, Discussion of Ante-Mortem Probate, Podcast with Connie Eyster and Professor Gerry Beyer (Mar 2023), https://actecfoundation.org/podcasts/discussion-of-ante-mortem-probate/ (last visited Nov. 3, 2024).

[34] National Center for Biotechnology Information, Improving Outcomes for Individuals Living with Dementia (2020), https://www.ncbi.nlm.nih.gov/books/NBK574334/.

[35] National Center for Biotechnology Information, Improving Outcomes for Individuals Living with Dementia (2020), https://www.ncbi.nlm.nih.gov/books/NBK574334/.

[36] MODEL RULES OF PRO. CONDUCT r. 1.14 (AM. BAR ASS'N 2016).

[37] Id. & cmt. 3

[38] See, e.g., Jeffrey A. Schoenblum, Will Contests An EmpiricalStudy, 22 REAL PROP. PROB. &TR. J. 607, 649 (1987)

[39] Supported Decision-Making, Sample Supported Decision-Making Model Agreements, https://supporteddecisionmaking.org/wp-content/uploads/2022/10/sample-supported-decision-making-model-agreements.pdf (last visited Nov. 5, 2024).

[40] Id.

[41] The recency of the enacted statutes means there is not caselaw on point to support this contention, however a fiduciary duty is generally owed where one person is in a position of trust or confidence to another, and has an obligation to act in their best interests.

[42] Wash. Rev. Code § 11.130.750(4) (2023).

[43] Wash. Rev. Code § 11.130.750(2) (2023).

[44] Eileen Y. Chou, What's in a Name? The Toll E-Signatures Take on Individual Honesty, J. EXPERIMENTAL SOC. PSYCHOL., (forthcoming 2024).

[45] U.S. Dep't of Health & Human Servs., National Plan to Address Alzheimer’s Disease: 2023 Update, pg 92 (2023), https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-national-plan (last visited Nov. 3, 2024).