Abstract
Background/Objective:
This study examined for the first time in Greece, the estate planning and advance care planning (ACP) of healthy older adults and older patients diagnosed with different types of neurocognitive disorders for the presence of a valid will, a durable power of attorney for healthcare, and a living will, while the associations between general cognition, education, depression, actual financial capacity, and demographic and socioeconomic characteristics were examined.
Methods:
A total of 543 participants were examined with neuropsychological tests including Legal Capacity for Property Law Transactions Assessment Scale (LCPLTAS). Along with the neuropsychological examination, all participants responded to relevant ACP questions.
Results:
Surprisingly, the majority of the participants regardless of their diagnostic group did not have a valid will, had not assigned a durable power of attorney for healthcare, and had not a written living will. Logistic regression revealed that biological sex, age, education, marital status, diagnostic group, MMSE, GDS, and actual financial capacity as measured with LCPLTAS did not predict the existence of a valid will, durable power of attorney, and written living will.
Conclusions:
A diagnosis of AD is not associated with more engagement in ACP as supported by research in USA. Concerns are raised about possible exploitation and abuse of older patients.
Introduction
Estate planning and advance care planning (ACP) are considered to be critical for Alzheimer’s Disease (AD) patients as well as their families. Estate planning and ACP refer to legal decisions linked to healthcare decisions and financial arrangements (Timmermann, 2015). More specifically, essential parts of any future planning include estate planning (valid will) and ACP (durable power of attorney for healthcare and living will; Choi, Kim, & McDonough, 2019).
Although loss of financial capacity and consequent problems are found in AD patients (Giannouli et al., 2018), in Parkinson’s disease (Giannouli & Tsolaki, 2019), in vascular dementia (Giannouli & Tsolaki, 2021b), in amnestic Mild Cognitive Impairment (aMCI; Giannouli & Tsolaki, 2021a), and in frontotemporal dementia (Giannouli & Tsolaki, 2022), the public opinion in Greece shows lack of knowledge about financial capacity, mental capacity, and legal issues in older patients and neurocognitive disorders (Giannouli, 2014), and so far, we still know little about estate planning and ACP in the Greek older population.
Despite different findings regarding prevalence of neurocognitive disorders in Greece, the high cumulative percentage of different types of neurocognitive disorders in the Greek older population (Politis et al., 2018) highlights the need for the main research question which focuses not only on whether Greek older adults (with or without a neurocognitive diagnosis) have a valid will, a durable power of attorney for healthcare or a living will, but the purpose of this study is to identify possible factors affecting engagement in these three types of estate planning and ACP.
Therefore, this study examined in different groups of older patients and healthy elders if they have made a will that is written and witnessed, a durable power of attorney for healthcare, and a living will. In addition to that, the demographic and socioeconomic factors that might predict involvement with the abovementioned were examined. Thus, the influence of biological factors such as the biological sex, the age, diagnosis, social factors such as rural/urban physical living environments, education, and socio-economic status (based on income) as well as the cognitive, behavioral, and psychological status of the participants were examined. Although racial and ethnic background in the USA has been found to play a moderating role when estate planning is examined in older adults (Choi, McDonough, Kim, & Kim, 2019), ethnicity/race, religion, employment status, and access to health services were excluded as variables as all participants were Greeks, Greek Orthodox Christians, retired due to the state age limit, and with a state insurance that ensured access to healthcare services. In addition to that, total household income as defined by annual income supported that all participants belonged to the average annual amount for Greek citizens, so also this variable was not entered in the statistical analyses. Finally, information about the marital status at the couple level in the case of married participants was not entered in the analyses, as spousal cognitive functioning was normal and without a formal diagnosis (for all participants with a living partner), and therefore could not be considered as a possible factor affecting one’s own estate planning and ACP.
Methods
The participants of this study were recruited in the Memory Clinic of a local Greek Hospital and elderly day care centers of the Greek Alzheimer Association, but the participants came from a mix of urban and rural settings and their neuropsychological assessment was only completed during their visit at Thessaloniki, the second largest city in Greece. A total of 543 Greek older adults (347 women and 196 men ≥65 years old) with a formal diagnosis (that was announced to them) of different types of neurocognitive disorders, coming from both rural and urban areas in Northern Greece, underwent a neuropsychological evaluation with an extensive battery of neuropsychological tests including Functional-Cognitive Assessment Scale (FUCAS), Trail Making Test (TMT)-Part B, Rey-Osterrieth Complex Figure Test (ROCF),-copy condition and immediate and delayed recall conditions of the complex design, Rey Auditory Verbal Learning Test (RAVLT), Rivermead Behavioral Memory Test (RBMT), and Verbal Fluency Task (see Table 1). Procedures were approved by the University Bioethics Committee (2/27.3.2013) following the declaration of Helsinki. The patients/participants provided their written informed consent to participate in this study.
Means and Standard Deviations of Measured Variables.
The patients were unable to complete this neuropsychological test.
Financial capacity was assessed with the administration of the Legal Capacity for Property Law Transactions Assessment Scale (LCPLTAS), which consists of seven main domains-sections measuring directly basic monetary skills, cash transactions, bank statement management, bill payment, financial conceptual knowledge, financial decision making, and knowledge of personal assets (Giannouli et al., 2018).
The Neuropsychiatric Inventory (NPI), which is a questionnaire given to the caregiver, exploring 12 behavioral and neuropsychiatric domains was also administered (Politis et al., 2004). Caregivers had to be family members (18 years or older, without current psychiatric diagnosis or a history of psychiatric disease, and able to give informed consent). Especially for the group of severe AD, their responses were used, as in cases of very low scores in MMSE, the examination of the older adults was impossible.
General cognition was assessed with Mini Mental State Examination (MMSE), which examines a plethora of cognitive domains such as memory, language, orientation, attention, and visual-spatial skills (Fountoulakis et al., 2000). Depressive symptoms were measured with Geriatric Depression Scale (GDS), which is widely used in the Greek older population (Fountoulakis et al., 1999).
Measurements of estate planning ACP were similar in coding as in Choi, Kim, and McDonough (2019): Thus, estate planning behavior was measured with the question: “Do you currently have a will that is written and witnessed?” (1 = yes, 0 = no). The ACP was measured with the question: “Have you made any legal arrangements for a specific person or persons to make decisions about your care or medical treatment if you cannot make those decisions yourself? This is sometimes called a durable power of attorney for healthcare” (1 = yes, 0 = no), and “Have you provided written instructions about the care or medical treatment that you want to receive if you cannot make those decisions yourself? This is sometimes called a living will” (1 = yes, 0 = no).
Statistical Analysis
All statistical analyses were performed using SPSS 23 (IBM Corp, Chicago, IL). Characteristics of the participants and neuropsychological test performance were expressed as mean values (M) and standard deviation (SD), and (in)existence of ACP was reported as percentages. Differences between groups (patients with different types of neurocognitive disorders and healthy comparison participants) were calculated with one-way analyses of variance (ANOVA) followed by post hoc tests (Tamhane’s T2 test equal variance not assumed), when variables were continuous, and with chi-square tests, when variables were categorical. Effects sizes were measured as eta squared. The role of various factors, such as biological sex, age, education, marital status, diagnostic group, MMSE, GDS, and actual financial capacity as predictors of the existence of a valid will, durable power of attorney and written living will were explored using logistic regression analyses. The level of statistical significance for all analyses was set at p < .05.
Results
The vast majority of the respondents indicated that they did not have a valid will (89.7%) at the time of their neuropsychological assessment, they had not assigned a durable power of attorney for healthcare (99.3%) and had not a written living will (100%). For the existence of valid will (where the results allowed chi square analysis), there was no difference in the responses of the different diagnostic groups (χ2(8) = 9.507, p = .301), sex (χ2(1) = 3.333, p = .068), and educational level based on years of education and the corresponding four categories (namely levels: no education, primary school, high school, and university; χ2(4) = 1.912, p = .752).
Despite the inexistence of estate planning and ACP, one-way analysis of variance (ANOVA) for all nine diagnostic groups showed statistically significant differences for the LCPLTAS total score (F(8,534) = 223.04, p < .001, η2 = .76). The same holds true and for the sub-scores of LCPLTAS that is for basic monetary skills (F(8, 534) = 166.71, p < .001, η2 = .71), cash transactions (F(8,534) = 170.65, p < .001, η2 = .71), bank statement management (F(8, 534) = 144.66, p < .001, η2 = .68), bill payment (F(8, 534) = 177.32, p < .001, η2 = .72), financial conceptual knowledge (F(8, 534) = 182.02, p < .001, η2 = .73), financial decision making (F(8, 534) = 123.03, p < .001, η2 = .76), and knowledge of personal assets (F(8, 534) = 158.23, p < .001, η2 = .70). Post hoc multiple comparisons using Tamhane’s T2 test equal variance not assumed showed that the mean score of LCPLTAS for healthy participants (M = 207.56, SD = 13.14) was statistically different from MCI (M = 182.42, SD = 27.66), and mild AD (M = 111.21, SD = 22.55). MCI patients also differed significantly from mild AD, a finding that raises concerns about MCI and AD as well as all the other diagnostic categories that fall 2.5 and 1.5 SDs lower than the M of the healthy group, and thus can be considered as financially incapable (Table 1).
Logistic regressions revealed that factors, such as biological sex, age, education, marital status, diagnostic group, MMSE, GDS, and actual financial capacity as measured with LCPLTAS could not predict the existence of a valid will, durable power of attorney, and written living will. Of course, the above should be examined with caution as the responses were extremely homogeneous in this sample.
Discussion
This is the first study in the Greek geriatric population to show that older adults, regardless of their cognitive status and diagnostic group, show extremely low rates of completion of legal ACP. This surprising finding may be explained by the negative attitudes (mainly fear of stigma and neglect) that family members/caregivers as well as older adults themselves hold about financial capacity and end-of-life planning (Giannouli et al., 2019; Giannouli & Tsolaki, 2022). In addition to that, there is a legal vacuum in Greece regarding the institution of living wills or prior directives. Although a living will may be taken into consideration (e.g., by physicians and family members), it is not legally binding (Charisi et al., 2014), and the same holds true for the durable power of attorney, who can be appointed by a notarized document, but the appointment loses all value if the older person is characterized as legally incapacitated due to a neurocognitive disorder. Nevertheless, an alarming finding is that patients who are characterized as financially incapable (based on their performance on a relevant neuropsychological test of financial capacity; LCPLTAS), do not have a valid will, have not assigned a durable power of attorney for healthcare, and have not a written living will at the time of their assessment, and may be more easily exposed to future financial exploitation and abuse. This huge discrepancy between actual incapacity and inexistence of ACP (taking the forms of valid wills, power of attorney, and living wills), opens a debate about public policy and old age in Greece.
These findings have several clinical implications. First, it is crucial to inform clinicians about the fact that if legal documents are null after a diagnosis, then possible ways to take care of older patients may be by highlighting the need for advocacy through education and by demanding a change in current Greek legal assessments, emphasizing the role of prior planning. Second, if families are willingly or unwillingly exploiting (or are more prone to exploit) the older adults who have not engaged in estate planning and ACP, then education and early intervention (standardized procedures for when an adult turns a specific age or when she is initially diagnosed) may also be needed. Given that multiple exposures to financial education have stronger positive associations with having a will and estate planning when a person is “cognitively intact” (Kyoung & Richard, 2021), this exploratory study aims to establish what factors should be considered in future research and educational programs regarding ACP not only in Greek cultural settings, but also in other European environments.
Two limitations of this study were that the majority of the participants were women (as females in Greece outlive males based on state statistics), and that perceived gender identity was not examined, but only the biological sex. The above findings open the debate about the ways of public sensitization in Greece regarding the legal and financial consequences of neurocognitive disorders, especially when testing shows that older adults are financially incapable.
Footnotes
Acknowledgements
The first author wishes to thank all the participants who took part in this study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical Approval
The author(s) declare(s) that ethical considerations of confidentiality, anonymity, and informed consent were adhered when conducting the study. Permission to conduct research was granted, and informed consent was sought in written form from each respondent. Procedures were approved by the University Bioethics Committee (2/27.3.2013) following the declaration of Helsinki. The patients/participants provided their written informed consent to participate in this study.
