Exploring the occurrence and the risk factors of the desire for hastened death and depression in people with early-stage dementia in Greece

Abstract

Objectives

To assess the factors associated with desire for hastened death and depression in early-stage dementia as well as the association between them. Also, to explore the mediator and moderator role of age in the relationship between depression and desire for hasten death.

Methods

A prospective cross-sectional study including 100 patients diagnosed with early-stage dementia from a rehabilitation center between December 2018 and July 2019. Measurement tools used were the Mini-Mental State Examination, the Greek Montreal Cognitive Assessment, the Greek Schedule of Attitudes toward Hastened Death, and the Geriatric Depression Scale-15 item. Patients diagnosed with dementia as a result of Stroke history were excluded.

Results

Factors of multifactorial analysis significantly associated with desire for hastened death were as follows: age (p = 0.009), marital status (p = 0.001), and depression (p < 0.001). The factor significantly associated with depression was age (p = 0.001). Also, a mediation/moderation analysis has shown that depression and age are significant predictors of desire for hasten death.

Significance of results

The desire for hastened death and depression in people diagnosed with early-stage dementia includes many components. Younger patients, men, higher educated patients, single, childless, and those with higher depression scores had higher desire for hastened death, while men and older patients had higher scores of desire for depression. Our study provides important information about the desire for hastened death and depression in early-stage dementia, their risk factors, and their association.

Introduction

Dementia is a progressive degenerative neuropathology syndrome in which there is deterioration in memory, behavior, the ability to perform everyday life activities, and the ability of thinking. According to World Health Organization worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year (World Health Organization 2020).

Dementia has a physical, psychological, social, and economic impact on patients and their caregivers. Losing control and dependence are key factors associated with a desire for hastened death (Bolt et al. 2015). This may be expressed by the patient himself/herself or after being asked about it. What lies beneath that desire might be something completely different; it might occur due to suffering from physical symptoms, psychological distress, existential suffering, differentiations of one’s social aspects of life, fear of the unknown future, or even a wish of “good” death – a death with no suffering and/or a death with the less degeneration (European Association of Palliative Care 2019; Meier et al. 2016).

The diagnoses of early-stage dementia arise fears and concerns about the future to patients and their beloved ones. There is an uncertainty around patients’ future behavior, possible deterioration, changes in body function, cognitive impairment, changes in their roles in family, and social withdrawal. In the past, the diagnosis of dementia might have been done even 3 years after the first symptoms, but that has changed nowadays. The diagnosis is made much earlier due to informed public about the symptoms and signs of dementia (Cahill and Moore 2014).

Desire for hastened death refers to a reacting phenomenon of a patient in an advance disease. It is a desire of quicker death than naturally that may arise as a result of suffering and despair. Wish to hasten death seems to be a manifestation of the desire for hastened death as a reaction to suffering in a medical dead-end condition. In such situations, good communication and understanding are key factors to assess whether wish to hasten death occurs due to acceptance of impending death or due to wish to die naturally upon his/her terms (Balaguer et al. 2016; Breitbart et al. 2000). A systematic review and meta-ethnography of qualitative studies examining the wish to hasten death suggested that its meaning might be a cry for help, a mean to end suffering, a wish to spare others from the burden of oneself, a way to preserve self-determination to the very end, and/or a will to live differently (Rodríguez-Pérez et al. 2017).

Furthermore, there is a distinction between the wish to hasten death and the desire for assisted death. A patient may express that he/she wishes to die, but that does not necessarily mean that he/she will act in order to hasten death (Gerson et al. 2019). In a prospective cohort study about attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers, only a small amount of patients may consider assisted death (Bascom and Tolle 2002; Emanuel et al. 2000). Assisted death as a term means a medical provider prescribes lethal drugs to be self-administered by a mentally component terminally ill patient (Dyer et al. 2015).

In Greece, assisted dying currently is forbidden and unlawful. The Greek court applied article 299 stating that homicide by intention is felony, article 300 stating that anyone that executes homicide after an intense and persistent demand from a victim suffering from an incurable disease is punished by imprisoned, and article 301 stating that assisting suicide is punishable (Parpa et al. 2006; Theofanidis and Mecek 2016).

Depression is common among patients diagnosed with dementia and is considered a risk factor of dementia. Depression is a syndrome including symptoms such as depressed mood, loss of interest and enjoyment, and the feeling of reduced energy. In order to be diagnosed, it must be present for at least a period of 2 weeks (Muliyala and Varghese 2010). Its diagnosis might be tricky in this population and that’s because overall care and treatment on demented patients is focused on memory difficulties rather than behavioral changes, and thus depressive symptoms might not be recognized in an early stage. Furthermore, depression impacts even more the cognitive impairment of the patient (Rubin 2018).

Apathy is a neuropsychiatric symptom with loss of motivation and the absence of emotional reaction and initiative. Apathy may occur in people diagnosed with dementia. The occurrence of apathy is accompanied by poorer disease outcome, impaired daily functioning, high levels of caregivers’ distress, and increased risk of mortality. Furthermore, apathy is also a risk factor for dementia (Steeman et al. 2006).

Coping mechanisms of demented patients are influenced by individual’s history of participation and adaptation, symptoms experienced, the existence of motivation for participation, and their identity (Górska et al. 2021).

Health-care professionals can and should properly and holistically assess patient’s needs and the reasons behind everything he/she express (European Association of Palliative Care 2019). Furthermore, most of the research about dementia and desire for hasten are focused in advance directives and the law of the countries (de Beaufort and van de Vathorst 2016; Tomlinson and Stott 2015). This is the first study to investigate the factors associated with desire for hastened death and depression in early stage of dementia as well as the association between them. Even in early stages of dementia, quality of life might be challenged. Investigating the occurrence of desire for hasten death and depression in this particular population and their associated factors provides more information in early stages of dementia.

Methods

Objectives

Desire for hastened death in the demented population is an important factor to be addressed with the appropriate confrontation and evaluation in order to understand the factors associated and the reasons that lie beneath that request. The objectives of the current study were to investigate the risk factors of desire for hastened death and depression in early-stage dementia as well as the association between them. The current study also explored the mediator and moderator role of age in the relationship between depression and desire for hasten death to realize why younger patients had higher desire for hasten death while older patients had higher desire for depression.

Participant and methods

The current study was conducted from December 2018 to July 2019 in a private geriatric center in Attica, Greece. It is a prospective cross-sectional study with 100 qualified participant patients.

Inclusion criteria (Figure 1) were as follows: (a) patients from 1 institution; (b) patients who were diagnosed with early-stage dementia, patients’ diagnoses occurred ≤1 year; (c) diagnosis obtained after a computed tomography scan or magnetic resonance imaging scan; and (d) patients who had a total score >23 in Mini-Mental State Examination (MMSE) and a total score <26 in Greek Montreal Cognitive Assessment (MOCA-Gr) for cognitive dysfunction.

Exclusion criteria (Figure 1) were as follows: (a) patients who were diagnosed with dementia due to a stroke episode occurrence and (b) patients who were unable to complete the assessment instruments.

Figure 1. Flowchart.

Participation was voluntary, anonymous, and confidential. Written informed consent was obtained from all subjects before entering the study. The study was performed in accordance to the Helsinki Declaration and according to the European guidelines for good clinical practice, and was approved by the Institution’s review board.

Of the 108 participants, 5 post-stroke patients were excluded due to difficulty in the dementia stage evaluation, along with the communication difficulties and the complex pathology. Of the eligible participants, 2 were excluded due to missing data and 1 refused to take part (too far to travel to the unit, too ill). Total valuable population in the final analysis were 100 participants (Ivan et al. 2004). This study was conducted with a convenience sampling.

The post-stroke population was excluded due to the difficulty evaluating the stage of dementia and the damage to the brain. Post-stroke patients might develop vascular dementia or mild cognitive impairment, or even mixed dementia. In all these diagnoses, the health symptoms that occur might improve over time and might be intense due to their acute appearance. These symptoms may vary from cognitive impairment to not being able to speak correct and fluently and to having difficulty with everyday tasks (Pendlebury 2009).

Metrics

Demographic data were obtained by patients’ file. MMSE and MOCA-Gr were administered by investigators, while the Greek Schedule of Attitudes toward Hastened Death (SAHD-Gr) and Geriatric Depression Scale-15 item (GDS-15) were self-reported. The questionnaires that were used were as follows:

Mini-Mental State Examination

The MMSE is a brief questionnaire that measures the cognitive status among geriatric patients. It can be used to evaluate if there is a cognitive impairment at certain time and to follow up cognitive changes in an individual overtime. The questionnaire has 2 parts: (a) first part has only verbal responses and includes the assessment of orientation, memory, and concentration, receiving a maximum score of 21 and (b) second part includes the assessment of the comprehension, name recognition, and ability to follow verbal and written instructions; spontaneous writing and copying a relatively complex figure; receiving a maximum score of 9. A score ≤18 is classified as severe cognitive impairment, 19–23 moderate cognitive impairment, and 24 normal cognitive status (Folstein et al. 1975). It has been recommended for rapid screening. It has been validated in Greece by Fountoulakis et al. (2000), in demented/non-demented geriatric patients.

The Greek Montreal Cognitive Assessment

The MOCA is a short-duration 30-point administered test, developed to assess patients with mild cognitive impairment. The test measures cognitive domains such as memory recall tasks, visuospatial abilities and multiple aspects of executive function, short-term memory, attention/concentration tasks, language, abstract thinking, and orientation. The cutoff score was ≤26 for identifying cognitive dysfunction (Nasreddine et al. 2005). In Greece, the MOCA-Gr has been translated by Kounti et al. (2007) and validated by Konstantopoulos and Vogazianos (2019) in patients with multiple sclerosis.

The Greek Schedule of Attitudes toward Hastened Death

The SAHD is a self-report questionnaire deeloped to assess patients’ desire for hastened death. All questions are answered with “true or false” format and includes variable aspects of desire for death including concerns about future of life, spirituality, and personal factors that influence patient’s desire for death and patient’s thoughts on hastened death. This self-report instrument was developed by Rosenfeld et al. (1999). It was originally validated in the United States in patients with HIV/AIDS. Concerning the cutoff score that has been used as in the previous validation studies, ≥7 would be classified as having a high level of desire for death and a more conservative cutoff score ≥11 would be classified as having a strong desire for death (Dugan et al. 1998). The scale has been translated and validated into Greek by Mystakidou et al. (2004), in terminally ill patients with cancer. In this study, analyses of data were made with the unifactorial version of SAHD-Gr. Translations, adaptation, and validation of this instrument has also been done in South Korea, Spain, German, and France (Shim and Hahm 2011; Dürst et al. 2020; Galushko et al. 2013; Villavicencio-Chávez et al. 2014).

Geriatric Depression Scale-15 item

The most common version of Geriatric Depression Scale is a self-report 15-item short version of the original GDS which was devised by Shiekh and Yesavage (Yesavage et al. 1982; Yesavage and Sheikh 2015). The GDS-15 is a valid and reliable screening tool for measuring cognitive dimension of depression with elderly individual no matter the site. All questions are answered with “Yes or No”; 10 questions indicate the presence of depression when answered positively and 5 when answered negatively. Concerning the cutoff score that has been used as in the previous validation studies usually was found to be a score ≥5. The GDS-15 has been validated in Greek by Fountoulakis et al. (1999), in geriatric population.

Statistical analysis

Data were expressed as mean ± S.D for quantitative variables and as percentages for qualitative variables. The Kolmogorov–Smirnov test was utilized for normality analysis of the quantitative variables.

Unifactorial analyses were performed using the Student t-test, one-way analysis of variance, and Spearman’s correlation coefficients to analyze the relation between the outcome variables (hastened death score and depression score) and the quantitative, qualitative demographic and clinical characteristics, respectively.

All demographic and clinical variables and questionnaire’s total scores in unifactorial analyses were included in a multiple linear regression model, using the enter method to determine the most significant factors associated with the outcome variables.

All assumptions of linear regression analysis (homoscedasticity, linearity, normality, and independence of error terms, as well as multicollinearity of independent variables) were examined.

All tests are 2-sided, and statistical significance was set at p < 0.05. All analyses were carried out using the statistical package SPSS version 21.00 (IBM Corporation, Somers, NY, USA).

Results

Demographic statistics

From the 100 participants, 50% were male and 50% female with a mean age of 76.5 years (range, 58–91 years) and the mean number of their children was 1.5 (range, 0–4). Furthermore, the marital status of the patients was single (18%), married (37%), divorced (16%), and widowed (29%); their educational level was primary (24%), secondary (38%), post-secondary (16%), and bachelor or equivalent level (20%); and type of dementia was Alzheimer (58%), Parkinson (27%), and other (15%). (Table 1).

Table 1. Demographic characteristics

Table 2 describes the cutoff scores of SAHD-Gr in our sample.

Table 2. Sample percentage in SAHD-Gr cutoff score

The intercorrelations of the assessed questionnaires were medium positive between SAHD-Gr and GDS-15 (p = 0.4, p < 0.005); low negative between GDS-15 and MOCA-Gr (p = −0.3, p < 0.005); low negative between GDS-15 and MMSE (p = −0.3, p < 0.005); and medium positive between MOCA-Gr and MMSE (p = 0.6, p < 0.005).

The unifactorial analysis revealed a statistical significant association between desire for hastened death and gender (p = 0.055), marital status (p = 0.001), educational level (p = 0.038), and number of children (p = 0.027). These findings demonstrate that men, singles, graduates of bachelor or equivalent level with no children had higher desire for hastened death (Table 3).

Table 3. Unifactorial analysis of hasten death score

All values are presented as mean ± SD.

* p < 0.05 vs. single.,

^** p < 0,05 vs. primary.,

^*** p < 0.05 vs. no child.

Table 4 shows that unifactorial analysis found a statistical significant association between depression and gender (p = 0.030) as well as age (p = 0.003). Specifically, men and older patients had higher GDS-15 score.

Table 4. Unifactorial analysis of depression score

All values are presented as mean ± SD.

Concerning the multifactorial analysis of desire for hastened death (Table 5), younger people (beta coefficient ± SE: −0.13 ± 0.05; p = 0.009, R ² = 5%), single (beta coefficient ± SE: −3.92 ± 1.11; p = 0.001, R ² = 19%), and higher depression scores (beta coefficient ± SE: 0.52 ± 0.010; p < 0.001, R ² = 13%) presented higher scores of desire for hastened death. These findings showed that the higher the score of depression the higher the desire, and the higher the patient’s age the lower the desire.

Table 5. Multifactorial analysis of hasten death score

The multifactorial analysis of depression (Table 6) found that older patients (beta coefficient ± SE: 0.15 ± 0.05; p = 0.001, R ² = 9%) presented higher values of depression, that is, the higher the patient’s age the higher the depression score.

Table 6. Multifactorial analysis of depression score

Mediation analyses

The first hypothesis in the current analysis was investigated so as to explore the mechanism concerning whether age mediates the association between depression and desire for hasten death. More specifically, mediation analysis tries to answer the question: How depression affects hasten death? Also, age was associated more with depression. In Figure 2a, results have shown that depression and age were significant predictors of desire for hasten death. The results pointed out a meditational model for desire for hasten death. The indirect effect was explored using a bootstrap estimation approach. In addition, results pointed out that the indirect coefficient for age was significant, p = 0.025. The ratio of indirect-to-total effect for age (Boot SE .114; Boot lower limit of the confidence interval [LLCI] −.554; Boot upper limit of the confidence interval [ULCI] −.072) indicates that age accounts for approximately 23% of the shared variance between depression and hasten death. The ratio of indirect-to-direct effect for age revealed that age accounts for approximately 19% of the shared variance.

Indirect effect z = −2.24 p = 0.025Ratio of indirect-to-total effect of X on YEffect Boot SE Boot LLCI Boot ULCIAge −.232,114 −.554 −.072 indirect/total = 23%Ratio of indirect to direct effect of X on YEffect Boot SE Boot LLCI Boot ULCIAge −.188,072 −.357 −.067 indirect/direct = 19%

Figure 2. (a) Mediation effect of age on the relationship between GDS and hasten death. (b) Moderation effect of age on the relationship between GDS and hasten death. Moderation effect of age on the relationship between GDS and hasten death exists until about 80 years old.

Moderator analyses

In Figure 2b, we investigated under what condition depression is related with desire for hasten death; could age be a variable that may affect the strength and/or direction of the relationship between depression and desire for hasten death? Moderation effect of age on the relationship between depression and hasten death existed until about the age of 80 years.

Discussion

The fast increasing elderly population, along with the respectively increasing burden of dementia care, arises the need to understand all things lying underneath the question of hastened death and depression occurrence in such population. The issue of this study is a public health significance. Choosing to further understand and assess at early stages, the reasons that lead to this kind of thoughts can enhance the quality of life of people with advanced dementia facing pain or/and other physical symptoms as well as psychosocial and spiritual issues (Murphy et al. 2016). Our results of people diagnosed with early-stage dementia show significant information regarding depression occurrence and desire for hastened death in such population and their associated factors.

Dementia and cognitive decline are the main causes of physical and mental disability among older adults. Disability is a term that includes impairments, activity limitations, and participation restrictions, thus leading to societal changes and difficulties in everyday living (Lisko et al. 2021). A study considering “lies behind the wish of hastened death” mentioned factors associated with the desire for hastened death. These factors were loss of community, self-exclusion and a fear of social rejection, existential isolation, and a way to escape from suffering (Monforte-Royo et al. 2012). In a systematic review, associated factors of desire for hasten death were found complex and multifactorial. Psychological, existential, and social aspects seem to be more significant than physical symptoms. Statements associated with the desire seemed to be patients’ perceptions of how they may feel in the future and health professionals’ and families’ interpretations of what lies behind the desire to die statements (Hudson et al. 2006).

The findings of the association between depression and desire for hastened death in a study of patients with cancer had sawn that desire for hastened death was less severe when depression was addressed, and depression levels were better. Unfortunately, personality trait measures were not included (O’Mahony et al. 2005). Also, another study of patients with cancer showed that a person with depression is 4 times more likely to present desire for hastened death than a non-depressed person (Breitbart et al. 2000). In literature, depression treated with psychotropic medication or psychotherapeutic interventions seems to reduce the desire for a premature death, thus matching our results that higher the depression score higher the wish for hastened death (Mishara 1999). Successful addressing and treatment of depression appears to decrease desire for hastened death in patients with advanced and/or life-threatening illness (Breitbart et al. 2013).

A study of desire for hastened death in a setting of terminal illness assumed that patients married with children are more likely to confront the stress and changes of their illness and less likely to develop a desire for hastened death (Chochinov et al. 2002; Maytal and Stern 2006). Loneliness and social isolation seemed to be important factors for the development of dementia (Morley and Berg-Weger 2020). Feeling unsafe might affect elderly patients’ behavior and their actions, making them more sensitive to experience the environment more threatening (Hawkley and Cacioppo 2010; Sundström et al. 2019). The above factors could justify our results regarding the relationship between family status and desire for hastened death as the single patients seemed to have more desire for hastened death.

Gender and educational level throughout literature hasn’t been validated as a significant factor burdening the desire for hastened death in dementia and are not considered as important social or demographic characteristics (O’Mahony et al. 2005; Price et al. 2011). This might be due to the difference between dementia and other progressive advance diseases and due to the complexity of factors influencing the wish for hastened death as mentioned above. Our findings suggest that men and higher educated patients are more likely to desire hastened death. A study exploring the phenomenon of suicidal behavior in demented patients suggested that risk factors for desire for hastened death are male gender, high educational level, profession, maintenance of insight, and endorsement of suicidal ideation (Cipriani et al. 2013). Furthermore, in a study of early stages versus later stages of Alzheimer disease and suicidal risk, risk factors include early-stage dementia, male gender, high educational level, professional occupation and depression post dementia diagnosis, maintenance of insight, and endorsement of suicidal ideation (Lim et al. 2005). Desire for hastened death is a broad term that includes requests such as physician-assisted dying, suicidal thinking, and behavior. Providing the appropriate support in order to satisfy patient’s needs and the communication required in this population can prevent such behaviors and thoughts (Kremeike et al. 2018).

Younger people seem to have a greater desire for hastened death. A systematic narrative literature review of suicide and assisted dying in dementia had shown that young age was an increased risk for suicidal behavior. A patient diagnosed with dementia at a young age might be terrified. Also, it refers that dementia as a whole did not seem to be a risk factor for suicide completion, but dementia in combination with depression and young age is a high risk factor (Diehl-Schmid et al. 2017).In a retrospective cohort study from the Department of Veterans Affairs, predictors of suicide in patients with dementia showed that the patients that committed suicide were younger age and with a recent diagnosis of dementia (Seyfried et al. 2011).

In our study, men seem to be more depressed, while in literature we find higher scores of depressive symptomatology in women diagnosed with dementia. In consequence, in a study investigating the occurrence of depression in the course of Alzheimer disease and the risk factors of incidence, the findings suggest that female gender is a risk factor for depression occurrence (Ryu et al. 2017). Furthermore, in a study searching for the relationship between depression and dementia in Korean population findings had shown that depression was identified as an associated factor for dementia in women (Yu et al. 2020). In a study of the gender differences in depression, gender differences in terms of psychosocial predictors such as social support, coping mechanisms, stressors, and interpersonal orientation throughout the lifespan had shown difference more clearly in social support. According to these findings, women seemed to be more communicative, they accept help more easily from friends and family and have higher rate of social contact and participation than men (Girgus et al. 2017). In a study assessing depressive symptoms, sex and the risk for the occurrence of Alzheimer’s disease in men diagnosed with depression are more likely to develop dementia than women. This study mentions that men are less willing to admit having dementia symptoms and thus aggravating their depression. Findings had shown that depression might be overestimated in women than men, leading to an increased number of false-positive women throughout studies (Dal Forno et al. 2005).

Also, regarding patients’ age and depression, our study showed that older demented people tend to have higher depression scores. In a study about severity and risk factors of depression in Alzheimer disease, older adults diagnosed with dementia are more burdened due to mobility and cognitive impairment, isolation, loneliness, and loss of loved one (Yahya et al. 2010). In a study regarding classification, overlap, and therapy of depression and dementia in older patients, older age seemed to be a risk factor for depression as well as dementia due to disease and age-related changes and age-related psychosocial stressors (Leyhe et al. 2017).

Distinguishing the risk factors between desire for hastened death and depression, risk factors of desire for hastened are gender, age, education, marital status, number of children, and depression, while for depression, risk factors are gender and age. Social and family support are important in order for demented patients to have less desire for hastened death, men seem to be more burdened in both desire for hastened death and depression. Furthermore, there is a difference in age; younger patients diagnosed with dementia seem to have higher desire for hastened death, while older patients are more likely to feel depressed. Also, depression contributes to desire for hastened death. In other studies of patients with cancer, it appeared as well that desire for hastened death was associated with diagnosis of depression and was influenced by social support and physical functioning (Breitbart et al. 2000). In another study on the relationship between poor quality of life and desire for hastened death in palliative care patients, it has been shown that depression, loss of meaning and purpose, loss of control, and low self-worth are significant predictors of desire for hasten death (Robinson et al. 2017).

The current study also explored the mediator and moderator role of age in the relationship between depression and desire for hasten death. Age seemed to be the underlying cause for the relationship between depression and desire for hasten death, and its effect exists until about 80 years old. For these above analyzed findings, the evaluation and follow-up of patients’ depression is crucial for the desire for hasten death.

Although data mentioned above are of great significance, some limitations must be noted. The sample of the current study was from 1 geriatric center and participation was voluntary. Furthermore, in this study, patients with early stages of dementia seemed to have higher desire for hasten death compared to other studies that included advance stages of dementia, cancer, and HIV/AIDS (Breitbart et al. 2000; Rosenfeld et al. 2000, 1999, 2014). Also, literature investigating desire for hasten death in early stages of dementia is limited and investigates suicidal behavior or suicidal ideation than desire for hasten death (Cipriani et al. 2013; Diehl-Schmid et al. 2017; Lim et al. 2005; Seyfried et al. 2011; Sundström et al. 2019). However, there are little evidence on this, which would be a limitation for this study. This is a reason for more investigation for patients with dementia in all stages.

Conclusion

Overall, the present study suggests new findings for the desire for hasten death and depression in early-stage dementia. Depression, male gender, young age, unmarried, number of children, and high education contribute to the development of the desire for hasten death. Also, male gender and old age seem to be more associated with the depression diagnosis in early-stage dementia population. In this study, a mediation/moderation analysis has shown that depression and age are significant predictors of desire for hasten death.