Thursday, January 01, 2004

Fading Minds and Hanging Chads:

Alzheimer’s Disease and the Right to Vote

By: David A. Drachman M.D.

Alzheimer’s disease or other causes of dementia afflict as many as 4 million Americans. As they experience gradual but inexorable cognitive failure, many continue to vote—often guided by nursing home staff or election volunteers. State laws yield little guidance on cognitive impairment and the right to vote. It is time to fashion realistic guidelines for people who can no longer exercise their right to suffrage with acceptable competence.

As America’s population ages, more people will fall victim to illnesses such as Alzheimer’s disease that bring progressive and inexorable dementia. What will happen to the millions of men and women who have taken the right to vote for granted, but gradually become cognitively impaired? Inconsistent, often archaic state laws will provide little guidance, says the author; illnesses leading to dementia are seldom recognized in state statutes. Nor can we expect that the votes of the impaired will be randomly distributed, neutralizing their effect on election outcomes, because several significant causes of biased voting may tend to channel their votes in one direction. The author argues that now is the time to fashion realistic guidelines for dealing with the cognitively compromised voter.

“Democracy is a form of government that substitutes election by the incompetent many for appointment by the corrupt few.” —George Bernard Shaw (Major Barbara)

More than one observer during the final days of the 2000 Presidential election may have recalled this wry comment by Shaw, as the secretary of state of Florida, the Florida Supreme Court, and finally the Supreme Court of the United States wrangled over how a tiny plurality of votes would determine the outcome of the election for a nation of nearly 290 million people. 

There was never a question about the fundamental principle of democracy: that the idealized will of the people must be realized through the alchemy of voting. But did the varied and arcane mechanisms by which voting took place throughout the country accurately transmit that popular will? In the wake of the 2000 election, that issue became the focus of controversy in a legion of editorials and legal briefs. Most agreed that the voting process could and should be improved. The “butterfly ballots” that confused voters into inadvertently designating a third-party candidate should be eliminated; the punch cards that led to dimpled punches or “hanging chads” were deemed unacceptable. Commissions were formed, reports were written; and the voting technology, site of voting, maintenance of voter rolls, poll worker training, computer and telephone access to voter validation information, accessibility for disabled individuals or those with limited English proficiency, and voter education all were scrutinized. 

As the mechanics and procedures of voting were probed, however, physicians began to draw attention to another largely unforeseen problem: voting by people with clinically significant dementia. Physicians taking care of patients with Alzheimer’s disease and other dementias noticed that many of their patients’ caregivers reported that the patient had voted in the 2000 election. Jason Karlawish and his colleagues found that 69 percent of the patients in a dementia clinic at the University of Pennsylvania had voted, 1 compared with 53.7 percent of the voting age population in the commonwealth of Pennsylvania.2 Brian Ott and his colleagues found that 60 percent of the patients in a Rhode Island clinic for people with dementia had voted3 —more than the 54.3 percent of the voting age population in that state, and considerably more than the national average of 51.3 percent. In both cases, some of the patients required assistance to vote, some were quite severely demented, and some voted by absentee ballot. 

These are studies of small, select populations; one cannot extrapolate, of course, to any reliable estimate of how many people with dementia are voting. But the data do raise the question of whether the number of cognitively impaired potential voters is substantial. Epidemiologic studies in the United States estimate that between 2.5 and 4 million people have Alzheimer’s disease or other dementias of varying degrees of severity. Looked at another way, approximately 10 percent of the population of elderly people (those older than age 65), and nearly half of those older than 85, are cognitively impaired—some still quite functional, others not. Having been functioning adults for most of their lives, they would have every expectation of continuing in their civic roles. With a U.S. population of 37 million people older than age 65, and more than 4 million older than 85 (some 4 percent of eligible voters), voting by patients with dementia could have a decisive role in both local and national elections. 

How does voting by people with dementia affect our elections and the democratic system? To what extent might exercising—or not exercising—their right to vote distort the electoral process?

How does voting by people with dementia affect our elections and the democratic system? To what extent might exercising—or not exercising—their right to vote distort the electoral process? What are the legal, medical, ethical, and technical aspects of the issue? And what (if anything) needs to be done? 

As we shall see, legal precedent in the United States supports the presumption that voting is a fundamental right, but with limits and exceptions. Today, state laws on voting by people with mental incapacitation are riddled with archaic, inconsistent, and largely uninterpretable language, referring to “idiots,” “lunatics,” and people who are “non compos mentis” as unfit to vote. None of the state constitutions, statutes, or laws refers specifically to people with progressive dementia. This article will consider that large and important group of elderly people. We will see that it is not the diagnosis of Alzheimer’s disease4 or other dementia that should prevent an individual from voting. Instead, it is that person’s mental ability or incapacitation, according to a defined standard, that is most relevant to the continuing right to vote. 

THE RIGHT TO VOTE—AND ITS LIMITS

The overwhelming trend in law and practice in the United States has been to enfranchise one group after another. Over some two centuries, amendments have steadily broadened the right to vote that is enshrined in the U.S. Constitution. Any proposal to limit the franchise of a group runs counter to this strong historical current. 

Although today we uphold virtually universal suffrage for adult U.S. citizens, when the Constitution was written the exclusion from voting of women, slaves, and people without property or other qualifications meant that “the people of the several states” entitled to vote were only about 6 percent of the adult male population. Five amendments to the Constitution have extended voting rights to new groups: 

  • The Fourteenth Amendment guaranteed “equal protection of the laws” to all citizens;
  • The Fifteenth Amendment prevented the denial or abridgement of the right to vote “on account of race, color, or previous condition of servitude”;
  • The Nineteenth Amendment prevented the denial or abridgement of the right to vote on account of sex;
  • The Twenty-fourth Amendment prevented abridgement of the right to vote for President, Vice President, Electors for President or Vice President, Senators or Representatives on the basis of poll taxes; and,
  • The Twenty-sixth Amendment lowered the voting age to 18.

These Amendments might suggest that all adult citizens in the United States had achieved the right to vote and have their votes counted equally. Until the Voting Rights Act of 1965, however, states often used so-called “literacy tests” to discriminate, particularly against black Americans.

In the 40 years since then, laws have guaranteed or facilitated actual voting among still other potential voters. The Voting Accessibility for the Elderly and Handicapped Act of 1984 required voting places for federal elections to be physically accessible; the Americans with Disabilities Act of 1990 (ADA) required states to provide assistance for people with physical or mental disabilities; and the “Motor Voter Act” in 1993 made registration to vote widely available through Motor Vehicle Registration offices and all other offices of state-funded programs that provide services to the general public. To facilitate voting under the ADA, people with mental as well as physical disability could be assisted in voting by having instructions explained in simpler language, being accompanied into the voting booth by a friend or family member (other than an employer or union official), and getting assistance from poll workers in casting a ballot. 

WHO CANNOT VOTE?

Today, U.S. federal law excludes two groups of people from voting: children younger than 18 (almost 80 million) and non-citizens, both legal and illegal or undocumented (almost 30 million). States retain the right to determine whether some individuals not covered under federal law can vote. Two significant groups of individuals are excluded from voting in many states by constitution, law, or statute: felons currently serving sentences (48 states) or former felons (8 states), totaling about 4 million people; and adult citizens with severe mental impairment (44 states). 

Unfortunately, the language in state statutes that refer to mental impairment is often archaic. It is certainly neither medically precise nor legally uniform from state to state. Thus, 15 states do not permit “idiots,” “lunatics,” or the “insane” to vote.

Unfortunately, the language in state statutes that refer to mental impairment is often archaic. It is certainly neither medically precise nor legally uniform from state to state. Thus, 15 states do not permit “idiots,” “lunatics,” or the “insane” to vote. Thirty-two states disallow citizens with “mental incompetence” or “mental incapacity” from voting. Eleven states preclude voting of citizens who are under “guardianship” or “conservatorship” because of mental disabilities. In 37 states and the District of Columbia, anyone who has been found to be incompetent by a court cannot register to vote. In some states, such as New Hampshire, when a person is declared incompetent, legal rights (including voting) are not removed, unless specified by the court. The variation in these laws, and the confusion in trying to implement them, is evident.5 These differing categories and approaches to mental impairment are scarcely a guide to determining the voting rights of persons with dementia. Yet, they are relevant because the validity of excluding individuals with some type of mental disability (although not, to my knowledge, specifically people with dementia) from voting has been tested in the courts. 

The New Jersey Constitution, for example, states that “no idiots or insane person shall enjoy the right to suffrage.” In 1999, five absentee ballots submitted by residents committed to Trenton Psychiatric Hospital were segregated, unopened, to be counted only if the voter was later deemed competent. Reviewing this action, the Appellate Division of the Superior Court determined that by itself residence at a psychiatric hospital was insufficient to sustain a challenge to the right to vote. “Voting is a fundamental right,” the court commented, and “the burden of demonstrating that an individual is incompetent requires proof that is clear and convincing.” 

In Maine, the constitution provides that “persons who are under guardianship for reasons of mental illness” are prohibited from registering to vote or voting in any election. In two recent referendums (1997 and 2000), attempts to remove this language by amending the constitution were defeated by voters. In 2001, three women under guardianship—two with bipolar disorder, one with “intermittent explosive disorder, antisocial personality, and mild organic brain syndrome” (secondary to encephalitis)—challenged this prohibition. All three provided medical or other evidence of understanding the nature and effect of the act of voting and ability to make an individual choice on the ballot. The U.S. District Court reviewed this action against the State of Maine and determined that this disfranchisement violated the due process and equal protection clauses of the Fourteenth Amendment to the U.S. Constitution. 

Although these legal decisions can appear narrow, dealing with particular aspects of state law related to mental impairment and voting, and not directly involving individuals with dementia, several principles emerge rather clearly:

  • The courts consistently recognize voting as a fundamental right.
  • The states have what is called a “compelling interest” in ensuring that people who vote understand the nature and effect of the act of voting and have the ability to make a choice.
  • The burden of demonstrating that an individual is incompetent to vote requires specific proof that is clear and convincing.
  • No broad rule about category or status can be used to deprive an individual of the right to vote. Instead, determination of competence to vote must be on an individual basis.

THE SPECIAL CASE OF DEMENTIA

How do these principles and precedents apply to questions about the right to vote of people with dementia? The psychiatric and neurologic causes of impaired mental competence are many, ranging from autism to head trauma, multiple sclerosis to bipolar disorder. Each has its specific manifestations, variable course, and severity. 

Alzheimer’s disease and other progressive dementias (such as frontotemporal dementia and Lewy body dementia) have certain characteristics that argue for considering these disorders separately when discussing voting rights. For example, although Alzheimer’s disease begins gradually, with mild memory and other cognitive problems, eventually and without exception everyone with Alzheimer’s who survives sufficiently long will become incapacitated by the disease. Patients with Alzheimer’s disease will become increasingly dependent on others, such as caregivers, aides, or institutional helpers. 

Under present law, as people with dementia begin to lose memory and other intellectual abilities, certain privileges and rights may be lost. For example, having a driver’s license is a privilege that depends— at least theoretically—on the capability to operate a vehicle competently and understand the rules of the road. Only California now requires physicians to report patients with Alzheimer’s disease to the department of motor vehicles. A few other states require older drivers to undergo brief tests of competence to renew their licenses. In most states, the observation by police of incompetent or dangerous driving can result in review and the revocation of a license. 

Courts can give guardianship or conservatorship to the next of kin (or others) if a person is determined to be incompetent. This guardianship can be limited (for example, to management of financial matters), so that a spouse can manage the finances of a husband or wife incapable of making decisions, while other rights are not transferred. In addition, a durable power of attorney for health care can transfer the right to determine medical management when someone is incapable of making those decisions. Life and death decisions are transferred from the person with Alzheimer’s disease or other dementia to their next of kin or another responsible person, who is expected to carry out previously stated or written health care decisions, or to use “substituted judgment,” interpreting what the intentions of the patient would be if he or she were still competent.

The right to make financial, property, and life and death decisions—rights absolutely central to the health, wealth, and autonomy of every person—can be legally transferred to another person. By contrast, the right to vote— arguably a right with far less effect on an individual’s life—can never be transferred to a surrogate.

Thus, the right to make financial, property, and life and death decisions— rights absolutely central to the health, wealth, and autonomy of every person— can be legally transferred to another person. By contrast, the right to vote—arguably a right with far less effect on an individual’s life—can never be transferred to a surrogate. Even if a person has always voted as a Republican or a Democrat, or always admired or despised a particular candidate, that person’s son, daughter, spouse, or guardian cannot cast a proxy vote for what manifestly would have been the person’s wishes. Indeed, even if a particular referendum outcome has direct, immediate relevance to the interests of an incompetent person, no one can use substituted judgment to cast the person’s vote in favor of that outcome. If no substitute is permitted for the decision and action of the individual whose vote is being cast, then we must decide when an individual with progressive dementia can no longer vote. We must approach this issue with concern both for the rights of the individual and for a potentially significant distortion of the electoral process, with an impact on democracy itself.

WHEN PEOPLE WITH DEMENTIA VOTE

At first glance, voting by people with dementia might appear to be irrelevant to election outcomes. After all, barely half of eligible adults in the United States exercise their right to vote, even in Presidential elections. In 2000, for example, only 51.3 percent of the voting age population, and only 67.5 percent of registered voters, cast votes in the remarkably close Presidential election. Among adults who are competent and do vote, many have a limited grasp of the issues or familiarity with the candidates. In short, voting is far from perfect in the United States, and the potential effect of voting by people with dementia could be judged in this light. Moreover, it seems plausible that if people who are mentally incapacitated by advanced dementia did vote, with no understanding of the candidates, issues, or voting process —essentially making a “dartboard” decision—their votes would make little if any difference. Genuinely random voting would end up as statistically meaningless “noise” in an election. Votes unguided by intentional choice on one side of the ledger would cancel out similarly unguided votes on the other side. 

The reality is quite different. Consider two significant ways in which the votes of variably incapacitated people, with moderate to profound dementia could be shifted in a given direction to alter an election outcome. 

Voting technology. The presidential election in Florida in 2000 underscored the importance of voting technology. Butterfly ballots confused elderly voters and punch cards with dimpled ballots and hanging chads left election officials unsure of the choice intended. Research has shown that the placement of names on ballots, the design of ballots, and how familiar voters are with a specific voting process can bias voting, including shifting the presumed randomness of uninformed votes.6 Efforts to eliminate these problems by using touch-screen electronic voting machines instead of lever-operated devices, paper ballots, punch cards, or optical-scan devices introduce new challenges—for both those seeking fair elections and those hoping to influence election outcomes. Votes of incompetent people may no longer be random when voting technology can accidentally, or by manipulation, bias them toward a specific outcome.

The placement of names on ballots, the design of ballots, and how familiar voters are with a specific voting process can bias voting, including shifting the presumed randomness of uninformed votes. 

Influencing Votes. A serious concern is that undue influence could be used to produce wholesale bias in the votes of groups of (mostly elderly) cognitively impaired or incapacitated individuals. In 1999, for example, 1.6 million people lived in nursing homes; some 50 to 70 percent of them were cognitively impaired. Still more people with varying levels of dementia are in assisted-living or retirement facilities. Elderly Americans are the population group most likely to vote. According to the U.S. Census Bureau, 79 percent of adults aged 65 to 74 were registered voters and 72 percent of them voted in the 2000 election. This live population of dependable voters overshadows the numbers of “dead-roll” voters that were used to shift elections in the days of machine politics in our big cities. Cognitively impaired, institutionalized elderly voters could be especially vulnerable to influence, direction, manipulation, or coercion— resulting in a pool of votes that could be used to turn the course of elections. 

Nursing homes, for example, typically have no guidelines and no system for evaluating the competence of residents to vote or for determining if they understand the voting process.7 A substantial population with problems ranging from trouble walking (not a criterion for voting) to advanced Alzheimer’s disease (a potentially serious criterion) could be involved in voting activity in such institutional settings. Opportunities for manipulating this large, vulnerable population are considerable. Although the extent of their actual use is unknown, three potential methods stand out. 

The first is volunteer assistance with voting. Nursing home residents, or elderly people in daycare, are often bused or taken by van to the polling place. In nursing homes and daycare centers, a visit to the polls could be considered another “activity,” comparable to bingo, arts and crafts, or a trip to the park. If volunteers from political organizations escort residents and assist in voting, the opportunity for manipulation of the vote is considerable. 

In addition, some nursing homes serve as polling places themselves or send residents to neighboring polling places. In these nursing homes, the activities director is typically in charge of guiding residents through the registration and voting process. Except in districts where the Board of Elections has issued specific guidelines, much of the process is under the control of untrained and unregulated individuals, who have the ability not only to facilitate voting but also to assist the residents directly in voting. 

The greatest opportunity for manipulation of voting in nursing homes would seem to be through the use of mail-in or absentee ballots. Incapacitated people could be influenced (or actually have their ballots filled out for them) by someone else, except in the few places where this process is regulated by a Board of Elections, as in Chicago and certain counties in Maryland. In the absence of such oversight, who knows how, or by whom, these ballots are completed? In Oregon, where all voting is now by absentee ballot, one source estimated that in the 2000 presidential election about 2.5 percent, or 36,000, ballots of the 1.5 million cast, were filled out, signed, or both by someone other than the registered voter.8 

THE REALITY VERSUS THE IDEAL

U.S. politics has been called a “contact sport.” Candidates sometimes seek, obtain, exercise, and retain power in ways that subvert the democratic ideal. Disallowing of eligible voters, failure or “fixing” of voting machines, stealing of votes, voting “early and often,” use of dead rolls, and many other intentional and accidental misadventures affect the outcomes of elections. In 2000, Alaska, for example, had 38,209 more names on its rolls than the number of voting age people; it was estimated that 10 to 20 percent of the names on Indiana voter rolls are bogus; and Arizona, Idaho, Texas, Oklahoma, Utah, and Wisconsin are reported to have up to 20 percent of bogus names. The practice of purchasing votes, particularly on mail-in ballots, in exchange for favors is still reported in parts of the country. Obviously, the risks presented by these and other opportunities of subverting the electoral process cannot be dismissed lightly. 

Perhaps in a nation with 10,000 local voting jurisdictions and no federal voting standards, the emergence of a kind of chaotic non-system was to be expected. Most people believe, however, that despite its known shortcomings the election process usually works well enough, except when the voting is very close. Our approach as a nation has usually been to make ongoing improvements in the elective process, with adjustments over the decades in the law, including the U.S. Constitution. Can this ameliorative approach meet the challenge of the cognitively impaired American voter? 

WHAT CAN, OR SHOULD, BE DONE?

Voting is a fundamental civil right throughout the United States, and the standards for the mental capacity required to exercise that right are low. Nevertheless, almost every state purports to define some threshold for adequate mental capacity, so that people who are truly incapacitated can be excluded from voting. People with progressive dementia, if they live long enough, will inevitably cross the threshold. How can we draw a line that divides those demented persons who still have the mental capacity to vote from those who no longer do? And how do we then translate this definition into specific guidelines for the electoral system—guidelines that will work in the hurly-burly of real elections? 

Surely it is not necessary to wait until we know the exact extent of the problem before taking steps to anticipate and prevent abuses. We know that the number of people with dementia is substantial, and there are risks both of depriving them of the right to vote when they still have the cognitive capacity to do so, and of manipulating their vote when that capacity has been lost. 

The first step is to formulate a clear definition of impaired mental capacity to vote that can be applied to Alzheimer’s disease and other progressive dementias. More precise language defining the level of capability necessary to exercise the right to vote is needed in all states. The language used by the U.S. District Court in Maine in 2001 is exemplary: The individual, “…must understand the nature and effect of the act of voting and be able to make an individual choice on the ballot.” 

No simple test of this capability is now applied at the time of voting. Guidelines for determining legal “competence” are not directly relevant. The bar must be set lower when determining competence to vote, compared with determining the ability to manage one’s finances. Nursing homes apply no test in connection with voting, and the so-called “Minimum Data Set” they maintain by law for other purposes is not specifically relevant to ascertaining voting capacity. Polling places have no mechanism for evaluating capacity to vote, nor are election officials trained or competent to make such judgments. At present, election officials, caregivers, or others may provide any level of “assistance” to individuals with mental impairment in registering to vote, voting at a polling place, or completing mail-in ballots. Not even the inability to function at the minimal level necessary to register or cast a vote would necessarily prevent a person with advanced Alzheimer’s disease from voting today. 

Some jurisdictions have identified procedures for use of absentee ballots and voting in nursing homes and assisted-living facilities, where (for example, in the City of Chicago and the State of Maryland) specifically trained election judges and poll watchers supervise the voting. Even with these procedures, however, it is not the cognitive capacity to vote that is being ascertained. 

To meet this challenge, three steps should be taken to achieve actual effective screening for the minimal cognitive capacity to be able to vote: 

  1. Develop and test the reliability of a simple screening test for determining capacity to vote. The Maine decision is an appropriate standard: People who understand the nature and effect of the act of voting and are able to make an individual choice on the ballot should have the right to vote. Absent this level of understanding, the capacity to vote should be forfeited.
  2. Inform and train election judges and poll watchers in the standard for the capacity to vote and in the use of a simple screening test. The knowledge and expertise to determine who retains, and who has lost, the capacity to vote cannot be assumed, and the polling place is the ultimate site where justified decisions must be made.
  3. Develop procedures similar to those used in Maryland and Chicago to supervise voting in nursing homes and assisted-living settings. It would be naive to ignore the possibility of unregulated, “wholesale” influencing of votes by partisan helpers among a large, incapacitated, and dependent population. 

As America’s population ages, and the number of people with Alzheimer’s disease and other dementias increases, we will face some unexpected ethical consequences of our success in prolonging life. One consequence that we can anticipate now is the conflict between guaranteeing the fundamental right to vote in our country, and the potential for abuse when a growing number of people with severe mental incapacity are influenced in the exercise of this right. Determining the proper balance is essential. 

A free and fair electoral process— the linchpin of a democratic society—often seems troubled. But, as Winston Churchill said, “Many forms of government have been tried, and will be tried in this world of sin and woe. No one pretends that democracy is perfect or all-wise. Indeed, it has been said that democracy is the worst form of Government except all those other forms that have been tried from time to time.” 9 

The author is grateful to members of the Dementia Voting Project for their contribution and discussion of ideas presented in this essay.

References

  1. Karlawish, JHT, Cassarett, DA, James, BD, et al. “Do persons with dementia vote?” Neurology 2002; 58: 1100-1102.
  2. Federal Election Commission. “Voter Turnout in 2000.” Federal Election Commission, http://www.fec.gov/pages/2000turnout (accessed January, 2004).
  3. Ott, BR, Heindel, WC, Papandonatos, GD. “A survey of voter participation by cognitively impaired elderly patients.” Neurology 2003; 60: 1546-1548.
  4. McKhann, G, Drachman, DA, Folstein, MF, et al. “Clinical diagnosis of Alzheimer's disease: Report of the NINCDS-ADRDA Work Group.” Neurology 1984; 34: 939-944.
  5. Schriner, K, and Ochs, L. “ ‘No right is more precious’: voting rights and people with intellectual and developmental disabilities.” Policy Research Brief (University of Minnesota: Minneapolis, Institute on Community Integration) 2000; 11(1).
  6. Alvarez, RM (2002). “Ballot design options.” Prepared for: Roth, SK. Human Factors Research on Voting Machines and Ballot Designs: An Exploratory Study. The Center for American Politics and Citizenship, http://www.capc.umd.edu/rpts/MD_EVote_Alvarez. pdf (accessed December, 2003).
  7. O’Sullivan, JL. “Voting and nursing home residents: a survey of practices and policies.” Health Care Law and Policy 2002; 2: 325-353.
  8. Los Angeles Times, December 11, 2000.
  9. Churchill, W. November 11, 1947. Speech delivered in the House of Commons, London, UK.



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Carolyn Asbury, Ph.D., consultant

Scientific Advisory Board
Joseph T. Coyle, M.D., Harvard Medical School
Kay Redfield Jamison, Ph.D., The Johns Hopkins University School of Medicine
Pierre J. Magistretti, M.D., Ph.D., University of Lausanne Medical School and Hospital
Robert Malenka, M.D., Ph.D., Stanford University School of Medicine
Bruce S. McEwen, Ph.D., The Rockefeller University
Donald Price, M.D., The Johns Hopkins University School of Medicine

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