Protecting the Health and Finances of the Elderly With Early Cognitive Impairment

Vignette 1: Effects of AD and MCI on Family, Occupation, and Finances

J. D. was a 70-year-old married man with a history of hypercholesterolemia and hypertension and a family history of AD (mother diagnosed in her early 70s) who presented to primary care, at his wife's behest, for evaluation of four to five years of mild short-term memory difficulty and progressive irritability. He continued to run his own business but had been less attentive to details, resulting in several financial losses. He was less interested in starting new projects or initiating social interactions with his family and became less amenable to advice and guidance from others. His Mini Mental Status Examination (MMSE) score was 26, with points off for orientation, serial sevens, and recall. Six years earlier, his MMSE was 30. He endorsed occasional mild feelings of sadness, reported that he had no problems, and attended the appointment only after a year of “pestering” from his wife and children. He was referred to the psychiatry department for evaluation of possible depression because of irritability, apathy, and sadness. His memory did not improve despite treatment for depressive symptoms. J. D. was eventually diagnosed with amnestic MCI, and a year later with early AD. Two years later, he developed paranoid ideation that his wife and brother were conspiring to control his business. It became progressively more difficult for J. D.'s brother to keep him abreast of business decisions. Conflict ensued between J. D.'s brother and daughter about who should run the business and what percentage of ownership each should have. J. D. had not written a will. He had had a somewhat turbulent relationship with his brother throughout his life, but their relationship had never been as difficult as it had recently. J. D. wished to challenge his brother's ownership interest in the family business, despite having worked with him for most of 40 years. J. D. lived with his wife and eldest daughter and did not wish to see his doctors; he believed that he had no problems unusual for his age. He took his antihypertensives and lipid-control agents sporadically.

AD- and MCI-associated alterations in behavior and function adversely affect family relationships and occupational performance. Family distress, financial losses, a decline in the care of medical conditions and legal conflicts may result. These are recurrent themes during management of neurodegenerative dementing conditions. The subtle signs and symptoms of a neurodegenerative dementing illness may appear years before overt dementia. If these symptoms are recognized early, there is an opportunity to minimize suffering and financial loss. However, as demonstrated in the vignette, the earliest stages of AD may be difficult to diagnose or differentiate from nondegenerative conditions, such as depression, in a standard clinical encounter. For example, the Mini-Mental Status Exam, a commonly used brief cognitive screen for dementia in primary care settings, has been shown to have relatively poor sensitivity for early AD or MCI and is particularly weak at detecting early deficits in executive function.^9,10 Other factors that may impede early diagnosis include the masking of deficits by compensatory behaviors,¹¹ the subtlety of personality changes,¹² and a relative preservation of the capacity to complete basic activities of daily living.^12,13

Behavioral symptoms may herald the onset of AD and are present throughout the disease course. In the above vignette, the patient's early memory decline was accompanied by irritability and mild depression. One study of 100 autopsy-confirmed patients with AD found that 74 percent had neuropsychiatric symptoms at the time of initial evaluation, 51 percent experienced apathy; 36.8 percent demonstrated verbal aggression; 25 percent, hallucinations; 20 percent, delusions; 17 percent, physical aggression; and 6 percent, depressed mood.¹⁴ In another study of patients who were not taking psychotropic medication or cholinesterase inhibitors, apathy (74%) was identified as the most frequent symptom in early, probable AD and was suggested as an early diagnostic indicator. In addition, anxiety (48%), agitation (35%), irritability (32%), depression (29%), and delusions (16%) were noted, as were disinhibition (6%) and hallucinations (3%) (Fig. 1).¹⁵ Other early, but dramatic, lapses in behavior and judgment, such as giving large sums of money to telemarketers, may herald dementia.⁶

• Download figure
• Open in new tab
• Download powerpoint

Figure 1.

Neuropsychiatric symptoms in mild Alzheimer's disease. Adapted from Bruen PD, McGeown WJ, Shanks MF, Venneri A: Neuroanatomical correlates of neuropsychiatric symptoms in Alzheimer's disease. Brain 131:2455–63, 2008.¹⁵

Especially noteworthy is the high prevalence of apathy, which can be defined as a reduction in motivated behavior that is not directly attributable to a diminished level of consciousness, cognitive impairment, or emotional distress. Apathy is often manifested by decreased motivation, drive, and task persistence; diminished interest, initiation, and social engagement; increased passivity and withdrawal; and indifference to the environment. Apathy, coupled with impaired judgment and depression, may interfere with the completion of detailed financial tasks, reduce effective communication with family members and business associates, increase acquiescence to the decisions of others, and result in the neglect of one's health.

Functional changes may lag behind behavioral symptoms and subtle cognitive impairment. The most important and predictable early functional change in people developing dementia may be confusion and difficulty with money and finances, as was the case with J. D. in the vignette.^16,–,18 The American Academy of Neurology's common warning signs for dementia include memory loss that affects job skills, difficulty performing familiar tasks, problems with language, disorientation in time and place, poor or decreased judgment, problems with abstract thinking, and misplacing things.¹⁹ Many of these changes are closely tied to mood and personality changes. Other subtle deficits in early AD may include blunted self-awareness, a lack of insight and concern,^20,–,22 denial of illness, an overestimation of one's cognitive skills (such as visuospatial ability and memory),²³ diminished appreciation of prosody,²⁴ impaired recognition of facial expressions,^25,–,28 and executive dysfunction (including reduced planning and foresight).^29,–,32

Neuropsychiatric deficits increase with the advancing stages of the disease.^33,–,36 One observational study noted a 90 percent prevalence of neuropsychiatric symptoms during the course of the disease; depressive symptoms, dysphoria, or major depression eventually occurred in approximately half of patients.¹⁴ Psychosis has been reported in 30 to 50 percent of patients at some time during the course of the illness, and more commonly in the later stages³⁷ (Fig. 1). Other late-stage symptoms include anxiety, social withdrawal, agitation, reduced speech output, alteration of long-standing family relationships, and loss of humor.

Patients who manifest significant depression, anxiety, or aberrant motor behaviors have greater limitations in instrumental activities of daily living.³⁸ These behavioral changes, which have no clear correlation with MMSE scores, have been shown to precipitate earlier nursing home placement and are linked to more rapid cognitive decline.^39,–,42 Behavioral changes may alter family and peer relationships, leading to diminished contact and decreased monitoring of the affected individual. For example, a patient who develops irritability, social withdrawal, and depressive symptoms may be less apt to pursue routine medical treatment and follow-up for conditions responsive to therapy. Increased dependence on others may result in their coercive influence over patients' financial affairs or estate planning.

MCI is an intermediate state of cognitive function between normal aging and dementia, when objective cognitive difficulty is present without significant functional impairment. It is recognized as a potential prodromal phase for AD, with an annual risk for progression to frank AD of 12 to 15 percent in people aged 65 years or older.^43,44 Almost half of MCI patients demonstrate neuropsychiatric symptoms coincident with the onset of cognitive impairment.⁴⁵ Depression occurs in 20 percent, apathy in 15 percent, and irritability in 15 percent. Increased levels of agitation and aggression are also present. Impaired awareness of memory dysfunction may be present to a degree comparable with that found in persons with early AD. ^36,46 Difficulties with medical decision-making have also been identified in this population.⁴⁷ In summary, mood and behavioral symptoms are highly prevalent in MCI and early AD; may sometimes make diagnosis of dementia more difficult; and may have psychosocial, financial, and legal consequences for patients and their families.

Vignette 2: Medical Decision-Making

M. J. was a 69-year-old woman who had been experiencing mild, progressively worsening forgetfulness for four or five years. She had had mild paranoid ideation about the bad intentions of a neighbor whom she thought was watching her, but otherwise she had properly managed her social activities, finances, and home maintenance. She was driving much less often than she used to because she felt less comfortable driving. On a routine physical examination, her primary care doctor discovered a breast nodule that subsequently proved to be metastatic breast cancer. She was counseled that the best chance for successful treatment for this type of cancer would be surgery, radiation, and chemotherapy. She completed the 10th grade and had always been able to understand her primary care doctor's careful explanations of medical information. Now, M. J. had difficulty in remembering the details of the alternative medical treatments, as her doctor explained them to her. She forgot significant pieces of information and seemed mildly confused. She rejected treatment, believing that her doctors wanted her to undergo treatment because they need more patients for their research studies. M. J. had never manifested any distrust of her health care providers, and according to her daughter, this distrust seemed to reveal a change in her personality. Her oncologist was stymied. Her primary care physician felt that she was not behaving entirely rationally, but not to the extent that she lacked the capacity to make medical decisions. At her daughter's urging, M. J. consented to a neurological evaluation to exclude possible causes of cognitive and behavioral changes. The workup included laboratory studies, neuropsychological testing, and a brain MRI. Paraneoplastic processes were excluded. The neurologist concluded that M. J. had single-domain amnestic MCI.

As this vignette illustrates, subtle behavioral and cognitive changes may occur in MCI and AD, years in advance of the clinical diagnosis of dementia, frequently affecting multiple domains of decision-making, including decisions about health care. Studies indicate that the proportion of elderly with undetected impairments in medical decision-making may be large, and may go under-recognized. Raymont and colleagues⁴⁸ surveyed 302 consecutively admitted medical inpatients and found that 40 percent appeared to lack the appropriate mental capacity for making medical decisions; these patients were older, were more likely to have cognitive impairment at the time of testing, were less likely to live independently, and had fewer years of education compared with those who maintained capacity. Family members and clinicians rarely recognized decision-making impairments in acutely ill hospital inpatients who appeared alert and had some ability to communicate.⁴⁸

Similarly, in a community-based study, Fazel and colleagues⁴⁹ assessed the competence of outpatients with dementia to complete advance medical directives compared with normal elderly controls. Of the latter group, 22 percent were deemed incompetent to complete the advance directives compared with 80 percent of the patients with dementia.

However, medical decision-making is one area in which legal and clinical standards for capacity are relatively well defined. For medical decision-making, the patient is required to give informed consent to, or refusal of, any treatment. The physician is required to explain a proposed intervention or treatment; disclose its rationale, risks, and benefits; and mention alternative treatments. To demonstrate capacity in this context, the patient must be able to communicate a decision to the medical provider, comprehend the relevant information, appreciate the situation and its consequences, and rationally manipulate information about treatment options.^50,51 Despite these clear standards, there can be considerable interclinician variability in determinations of patient competence. When physicians in the subspecialities of geriatric psychiatry, geriatric medicine, and neurology conducted detailed bedside testing of persons with early AD for the purpose of determining competence to make informed medical decisions, the agreement rate was only 56 percent.⁵² Also, the most common forms of bedside mental status testing may reveal only minor abnormalities in persons with MCI and early AD, leading health care providers, family members, and legal authorities to erroneously conclude that the persons' judgment and complex medical decision-making capabilities are intact.^47,53,–,55

Standards of competency vary across contexts and relevant state law. In addition, courts and clinicians draw an important distinction between global and task specific limitations on decision-making ability, preferring to limit a declaration of incompetence to the specific task undertaken. For example, a court may determine that a person's impairment is primarily in the domain of financial management and that other domains of personal decision-making are intact. This approach results in an evaluation of specific decision-making capacities on a case-by-case basis, with little predictive power.

In light of these varied and vague parameters for determining decision-making competence, many different medical and legal frameworks are used for evaluating competence for different activities. In practice, capacity evaluators disagree least often about patients' capacity to understand the matter at hand and most often about patients' appreciation of context and the quality of their reasoning.⁵⁶ Evaluators often disagree on which dimensions of competence are important, the measurement of the individual dimensions of competence, and the thresholds for impairment. Important variables include differences in testing methods, the context-dependency of performance (especially when executive function is impaired), and fluctuations in performance (especially those related to medical illness or mood). Assessments will always be most difficult in crisis situations.

Vignette 3: Testamentary Capacity and Financial Decision-Making

K. O. was an 89-year-old man with mild-to-moderate AD. His wife, age 83, had probable early AD. K. O. managed most financial matters without conferring with his wife or children. He engaged in estate planning for the couple of years before his cognitive decline. The children were aware of their parents' plan to leave 10 percent of their assets to deserving charities that the parents had supported in the past. After K. O.'s death, the bulk of his estate passed outright to his widow. Under the influence of a charismatic leader of a charity and in the context of continued cognitive decline, his wife altered the charitable donations to comprise 60 percent of the estate. The children voiced concerns about their mother's mental state to her primary care physician of many years, who concluded, without a formal examination, that she lacked the capacity to make changes to her estate plan. Mrs. O., upset by this opinion, had her estate attorney engage a geriatric psychiatrist, who performed a brief evaluation that consisted of a 15-minute interview without psychometric testing. The psychiatrist offered the opinion that Mrs. O. retained the capacity necessary to change her estate plan. She executed a new will, with the assistance of her estate lawyer and the encouragement of the charitable organization. She also instructed her financial advisor to “cash out” of long-term investments to make her estate more liquid for eventual distribution, generating adverse tax consequences. This will withstood subsequent antemortem and probate legal challenges. The children, who feel that their mother's fragile testamentary capacity and vulnerability to undue influence are obvious, have been frustrated by their inability to protect their mother and their inheritance.

Testamentary capacity refers to the capacity to make or alter a valid will. According to the Uniform Probate Code in the United States, a person who makes a will must be aware of the individuals, such as children, who would be the natural beneficiaries of the will; understand the nature and extent of the property at stake; understand the disposition the will is making; and form an orderly plan for disposition of the property.⁵⁷ Testamentary decisions made by MCI and early AD sufferers will have far-reaching consequences for individuals, society, and financial markets, as an estimated $59 trillion passes down from the estates of the U.S. elderly over the next 55 years.⁵⁸ In addition to writing wills, this population will make complex financial decisions with far-reaching consequences.

Cognitive and behavioral impairments in the elderly, along with subsequent difficulties with decision-making, render them especially vulnerable to financial exploitation, a problem with enormous social and personal costs. Criminals have been among the first to seize upon opportunities created by the vulnerabilities of this population. More than 7.3 million Americans over 65 have been victims of financial fraud, according to a 2010 survey by the Investor Protection Trust, a nonprofit investor education group.⁵⁹ Consumer Action, a national consumer advocacy group, reports that persons over the age of 60 constitute 15 percent of the population, but an estimated 30 percent of financial fraud victims.⁶⁰ In state surveys of financial fraud and abuse, women and older seniors are more likely to be victimized, and dementia is a significant risk factor for this abuse. The National Center on Elder Abuse estimates that only 1 in 25 cases of financial exploitation is reported, suggesting that there may be 5 million financial-abuse victims each year.⁶¹ The Metropolitan Life Company estimated that older Americans lost at least $2.9 billion to financial fraud in 2010.⁶²

Financial advisers may also regularly confront the question of their older clients' capacity to make financial decisions. In 2009, 350 investment advisers were surveyed by Fidelity Investments.⁶³ They were asked whether they suspected that any of their clients had dementia and, if so, whether they had responded to the situation. Eighty-four percent felt that they had clients with symptoms of dementia; 96 percent stated they did not feel prepared to deal with those clients; and 50 percent acknowledged that they were not comfortable raising the subject of dementia. Many noted that their first duty was to protect their clients, that they were prohibited from disclosing information about their clients without their clients' permission, and that referral to clinicians for evaluation requires the clients' consent, which could be traumatic for clients and unsettling for the relationship. Expense was also cited as a deterrent.⁶³ Recent evidence indicates that elderly victims of financial abuse are less likely to discuss their finances with a trusted individual, compared with those who do not become victims.⁶⁴ State governments have been attempting to address these concerns through regulations that allow brokers to report financial abuse to authorities.⁶⁵ The Financial Industry Regulatory Authority (FINRA) has also launched a phone helpline for seniors, enabling them to share their concerns with a neutral third party.⁶⁶

Despite the growing magnitude of these concerns, courts have not yet developed a uniform approach toward assessment of elderly people's capacities to make financial and other decisions. Several scholars in this area have developed well-normed psychometric instruments designed to reveal and quantify impairments in financial decision-making⁶⁷; however, they have not been widely used by forensic or other medical professionals.