Losing persons: the pastoral imperative for affirming continued personhood for those living with dementia

e20544 Background: Despite their poor prognosis, few cancer patients have advanced care directives (ACD). Most often, ACD is discussed in an inpatient setting, when the patient is acutely ill and often nearing the end of life. Timely and thoughtful discussion would be better accomplished for both the patient and the family before such hospitalization. Methods: Interviews were done in 108 outpatients in an ambulatory chemotherapy center. A questionnaire noted whether ACD was executed or not, demographics (including education, religion and insurance status), performance status, characteristics of their cancer, and family status. All patients without ACD were counseled on the importance of ACD. The presence of an ACD was documented at each visit. Statistical comparison of patients with and without ACD at each visit was done. Results: The following variables were significantly associated with having an ACD at the first visit. Patients living alone could not be included in the logistic regression model, as none had advanced directives. However ACD execution differed significantly in patients living alone, compared with those living with family (0/33 vs 15/75; p=0.005). An additional 42 patients executed an ACD by the third visit. At the third visit, only living with family vs living alone remained significantly associated with having ACD. [OR=3.17 95% CI: 1.34, 7.50; p=0.009]. Conclusions: The following findings are noteworthy. Only 15/108 (14%) cancer outpatients had ACD. This disturbingly low rate increased to 55/108 (51%) after physician- initiated discussion. The following characteristics predicted not having ACD before intervention: younger age, absence of metastasis, better performance status, lower education status and living alone. After several physician interventions, only living alone remained a significant barrier to ACD execution by cancer outpatients. These results provide new insights and strategies to encourage improved advanced directive execution. [Table: see text] No significant financial relationships to disclose.

ObjectivesMotor neuron disease (MND) is a neurodegenerative disorder leading to functional decline and death. Multidisciplinary MND clinics provide an integrated approach to management and facilitate discussion on advanced care directives...

(1) Background: Advance directives are an expression of a person's autonomy regarding end-of-life care. Several studies have shown that the level of completion in countries where advance directives are legalised is low. To better understand this phenomenon, it is important to know the perceptions, attitudes, and knowledge that the population has about this instrument. The aim of this article was to explore a population's perceptions and/or attitudes and/or knowledge toward advance directives. (2) Methods: A search was conducted in March 2023 in the ISI Web of Knowledge, Scopus, and PubMed databases using the following keywords: "advance care directives", "advance care planning", "perceptions", "attitudes", and "knowledge". Two hundred and twenty-four (224) articles were identified, and thirteen (13) were included for analysis. (3) Results: The selected articles point to a low level of knowledge toward advance directives: they recognise a strong positive attitude of the population toward the implementation of advance directives but a low level of achievement. (4) Conclusions: Studies on perceptions/attitudes/knowledge toward advance directives are important to understand the real needs of the population regarding this issue and to implement more adequate and effective promotion and dissemination measures.

The aim of this study is to report the findings of a case study that explored the phenomenon of advance care planning and advanced care directives in residential care settings in Australia. In particular, this study focuses on the experiences of residents' and family members'. Understanding the phenomenon of advance care planning and advanced care directives is vital to end of life decision making. There are few studies that report the experiences of older people and family members in relation to advance care planning and advanced care directives. A case-study research was conducted and data was collected over 7 months involving participant observation, field notes, semi-structured interviews and document analysis. The participants' early experiences with advance care planning were expressed in unpleasant, hostile and negative ways. However, those emotions and concerns were transformed to more stable, amenable and positive attitudes and feelings as issues were resolved. The factors that enhanced or inhibited the transition were described. Older people and families view the end of life with broader psychosocial and spiritual meanings shaped by a lifetime of experiences. Advance care planning led to a different level of appreciation of personal entity and transcendence. However, advance care planning demands concerted action and support by everyone involved.

How Aware of Advanced Care Directives Are Heart Failure Patients, and Are They Using Them?

To discover where patients with advance directives (ADs) obtain them and to learn what patients' understanding is of how ADs function. Adult patients with ADs admitted to the four acute-care hospitals in Monterey County, California, were asked to participate in a survey during the study period 1 July to 8 September 2009. Of 5,811 total admissions, 455 patients (7 percent) had an AD. Of these 455 patients, 204 (45 percent) completed our survey. Participants included 146 patients with a power of attorney for healthcare (72 percent), and 21 patients who were unable to identify the type of AD they had (10 percent). Attorneys provided ADs to 99 participants (49 percent) and personal physicians provided ADs to 12 participants (6 percent). Most participants (181, or 89 percent) had spoken to their family about their AD; fewer (131, or 65 percent) to their physician. Of the 146 participants with a power of attorney, only 73 (50 percent) said they had spoken specifically to their agent. Family members (38 percent) and attorneys (35 percent) were seen as helpful in completing ADs; physicians (1 percent) were not. Few study participants had advance directives, and attorneys provided and discussed ADs with study participants more than physicians did. Because many patients with ADs seem not to fully understand them, new approaches to advance planning education must be developed.

Back to table of contents Previous article Next article Clinical & ResearchFull AccessYoung-Onset Dementia More Prevalent Than Previously EstimatedNick ZagorskiNick ZagorskiSearch for more papers by this authorPublished Online:23 Sep 2021https://doi.org/10.1176/appi.pn.2021.10.16AbstractA meta-analysis of 95 studies from around the world suggests that nearly 4 million adults globally may experience dementia before age 65.Though considered a disease of the elderly, dementia can strike younger adults as well (Alois Alzheimer’s first patient was a woman who began experiencing memory loss and delusions in her 40s). Yet attention to patients with rare young-onset dementia—typically characterized as dementia before age 65—often pales in comparison to that given to the estimated 45 million adults living with late-onset dementia.A large meta-analysis conducted by Sebastian Köhler, Ph.D., an associate professor of psychiatry and neuropsychology at Maastricht University in the Netherlands, and colleagues suggests young-onset dementia may be more common than previously estimated. Making use of data from 95 individual studies encompassing 2.7 million adults in more than 30 countries, the researchers calculated a global prevalence rate of 119.0 cases of young-onset dementia per 100,000 people. This figure is more than double that of previous estimates and equates to about 200,000 cases of young-onset dementia in the United States and nearly 4 million globally.“Although this is higher than previously thought, it is probably an underestimation owing to lack of high-quality data,” senior author Köhler and colleagues wrote in JAMA Neurology. They noted that data on adults under age 50 were sparse, as were data from low- and middle- income countries.The authors also excluded studies that focused on at-risk population groups like patients with HIV, noted Brian Draper, M.D., a conjoint professor of psychiatry at the University of New South Wales in Australia, who specializes in young-onset dementia. “The bulk of dementia research is related to diseases like Alzheimer’s or frontotemporal dementia, but these secondary dementias that arise from other disorders that can impact the brain should not be discounted,” he said. Draper has done a lot of work with alcohol-related dementia, which overlaps with Wernicke-Korsakoff syndrome, a condition in which chronic alcohol use leads to vitamin B deficiency and subsequent neurodegeneration.Draper told Psychiatric News that the reduced attention to secondary dementias is not entirely from scientists or physicians. “There has been pushback from patients and advocacy groups for conditions like HIV to avoid associating these disorders with dementia due to stigma,” he said. As a result, he said, places like alcohol treatment centers do not often provide dementia screening, which contributes to patients slipping through the cracks.“From a personal management and clinical care perspective, it’s imperative to diagnose young-onset dementia as soon as possible,” Draper continued. “By and large, people who develop dementia earlier in life have a faster rate of cognitive decline, yet they live longer with the disease”—a factor that may be due to younger patients having fewer comorbidities at the time of dementia diagnosis.In an editorial that accompanied Köhler’s JAMA Neurology article, David Knopman, M.D., a professor of neurology at the Mayo Clinic, wrote: “Young-onset dementia is a particularly disheartening diagnosis because it affects individuals in their prime years, in the midst of their careers, and while raising families,” he wrote. “Most dementia care is geared for older patients, and as a consequence, services are rarely available to address the needs of someone diagnosed with dementia in their 50s who has dependent children at home and a spouse who must continue working. Understanding the prevalence and incidence of [young-onset dementia] is a first step in addressing this challenge.”In comments to Psychiatric News, Knopman said that the results of the meta-analysis offered an important perspective on the rates of dementia over time and the relative risks in older versus younger adults. Overall, the study suggests that about 3% of all dementia cases in the United States are in adults under age 65. However, most of these cases were in adults aged 55 to 64.“Among the really young, where the burden would be greatest, dementia is exceedingly rare,” Knopman said. In the age range of 30 to 34, for example, Köhler’s meta-analysis calculated a prevalence of 1 case of dementia per 100,000 people. “At that level, routine screening is out of the question,” he said. “So, on a practical level, how can physicians identify a problem they might encounter once a decade?”It’s a pertinent question for psychiatrists, Draper said, since work by him and others has shown that chronic, treatment-resistant depression can be an early symptom of young-onset dementia. “If you have a middle-aged patient with treatment-resistant depression who begins complaining of memory problems, you should entertain [underlying] dementia as a possibility,” he said.Draper noted that Alzheimer’s disease—which is the most common cause of dementia in older adults—is less dominant in young-onset cases. More commonly, younger patients may experience Disorders like frontotemporal dementia and Huntington’s disease are more common. This is why psychiatrists need to look at more than just cognition in younger people, as behavioral (personality changes) and/or physical symptoms (such as gait disturbances) are most likely to emerge first, he said.“There is no specific pattern that can help diagnose patients at an individual level,” Knopman said. “But if physicians keep an open mind that dementia exists before 65, that can help awareness.”Firsthand clinical experience is also valuable, Knopman continued. “Once you have seen one patient with dementia, it helps make future diagnoses much easier. If more clinicians could do a geriatric rotation, that would help diagnosis tremendously.”The meta-analysis was supported by the Gieskes-Strijbis Foundation, Alzheimer Netherlands, and the Dutch Young-Onset Dementia Knowledge Centre. ■“Global Prevalence of Young-Onset Dementia: A Systematic Review and Meta-analysis” is posted here. ISSUES NewArchived

Physicians need to take the lead in advance care planning.

FRONTOTEMPORAL DEMENTIA WITH parkinsonism linked to chromosome 17 (FTDP-17) is characterized by motor, psychiatric and cognitive symptoms. Executive dysfunction and behavioral disturbances such as disinhibition, socially inappropriate behavior, and unsafe driving habits1 are crucial for differential diagnosis and are usually described as changes in personality. In most cases of frontotemporal dementia, personality assessment is limited to the detection of behavioral abnormalities by means of symptom-oriented scales such as Neuropsychiatric Inventory. To our knowledge, personality changes in FTDP-17 have never been described in the paradigm of individual differences to show which personality traits are altered by the disease. The use of personality questionnaires enables direct observation of personality changes during progression of the disease, and the results can be interpreted in the context of personality dimensions according to a given personality theory. Herein we present the case of a 58-year-old man diagnosed with FTDP-17 due to the P301L mutation in the tau gene (MAPT) who developed early personality changes, 7 years before the onset of motor symptoms. Psychometric assessment of personality was administered using the Minnesota Multiphasic Personality Inventory (MMPI), a common patient-derived test, and an informant questionnaire based on Big Five personality model derived from the International Personality Item Pool,2 the International Personality Item Pool–Questionnaire, Polish Version (IPIP-QPV).3 The MMPI was performed at the age of 53, 5 years before motor symptoms onset. Results (L-52, F-65, K-41, 1-Hs 86, 2-D 75, 3-Hy 87, 4-Pd 47, 5-Mf 51, 6-Pa 65, 7-Pt 81, 8-Sc 67, 9-Ma 47, 0-Si 80) showed lack of foresight, poor insight, egocentrism, somatization tendencies, fatigue, depressed mood and introversion. Slightly elevated F score may be associated with somatic complaints (Hy4-115). The IPIP-QPV was completed by the patient's wife when he was 58. At the time of this assessment the patient scored 24 on Mini Mental State Examination and 11 on the Blessed Dementia Rating Scale, which highlights the discrepancy between relatively mildly affected cognitive status and moderate impairment in daily living activities, mostly due to executive dysfunction, personality and emotional changes. The results (min. −20, max. 20 for each trait) are presented here as: before the disease onset/at the time of testing: extraversion −14/−13, openness to experience 7/−6, agreeableness 3/−1, conscientiousness 5/1, neuroticism −1/−4. The IPIP-QPV indicated that introversion was independent of the disease progression. Interestingly, the patient became not only less open to experience, less agreeable and conscientious, but also less neurotic. Low openness to experience and decreased agreeableness seem connected to dysexecutive syndrome with impaired mental flexibility, set shifting and inhibition, while decreased neuroticism may be related to poor insight and disinhibition. This report shows that analyzing personality changes in dementia with reference to psychological theories can provide complementary information to cognitive and behavioral data. Personality assessment shows the dynamic aspect of individual personality during disease progression and provides useful data for patient care.

Conventional scientific definitions of dementia, or its newer proposed alternate—neurocognitive disorders place emphasis upon cognitive function, particularly memory. The changes in thought, emotion, behavior, personality, and biological function are usually considered only of secondary importance. At the core of the illness, however, lies a progressive loss of self, and by extension, of personhood, identity, autonomy, and agency. The identity of the person living with dementia, and the deterioration of a sense of self assumes significance in planning end of life care, including palliative care. A consideration of self and identity is also significant where physician assisted death, incorporating euthanasia, has legal sanctity. As dementia progresses, there is usually a progressive loss of personal decision making capacity and legal competence. Shared decision making, advance care directives and proxy representatives are options available to safeguard autonomy and agency in such cases. Advance care directives are often treated as static documents. The loss of self and deterioration of identity in persons with dementia means, that there is a psychological discontinuity across time and space, though biological continuity is retained. The discontinuity in self and identity however, imply that the person with dementia changes considerably and so too may values and beliefs. A document which best reflected the wishes of the person with dementia in the past, may not always do so now. Advance directives and proxy representatives may need to be dynamic and evolve over time, particularly where end of life care and physician assisted death is being invoked.

Frailty is a multidimensional state related to accumulation of age- and disease-related deficits across multiple domains. Older people represent the fastest growing segment of the peri-operative population, and 25-50% of older surgical patients live with frailty. When frailty is present before surgery, adjusted rates of morbidity and mortality increase at least two-fold; the odds of delirium and loss of independence are increased more than four- and five-fold, respectively. Care of the older person with frailty presenting for emergency surgery requires individualised and evidence-based care given the high-risk and complex nature of their presentations. Before surgery, frailty should be assessed using a multidimensional frailty instrument (most likely the Clinical Frailty Scale), and all members of the peri-operative team should be aware of each patient's frailty status. When frailty is present, pre-operative care should focus on documenting and communicating individualised risk, considering advanced care directives and engaging shared decision-making when feasible. Shared multidisciplinary care should be initiated. Peri-operatively, analgesia that avoids polypharmacy should be provided, along with delirium prevention strategies and consideration of postoperative care in a monitored environment. After the acute surgical episode, transition out of hospital requires that adequate support be in place, along with clear discharge instructions, and review of new and existing prescription medications. Advanced care directives should be reviewed or initiated in case of readmission. Overall, substantial knowledge gaps about the optimal peri-operative care of older people with frailty must be addressed through robust, patient-oriented research.

We argue that an advance directive (AD) is not invalidated by personality changes in dementia, as is claimed by Rebecca Dresser. The claim is that a new person results under such personality changes, and that the former person cannot write an AD for the new person. After stating the argument against ADs in cases of dementia, we provide a detailed examination of empirical studies of personality changes in dementia. This evidence, though not strong due mainly to low sample sizes and different notions of personal identity, does not support Dresser's position. Given the weakness in the empirical evidence, we turn to a philosophical defense of ADs based on a social contract view supporting the current interests of those writing ADs. Additionally, we argue that personality change is not equivalent to change in personal identity, as would be required by the argument against ADs in cases of dementia.

Les directives anticipées et le désir de maîtrise de sa fin de vie

Supportive care for patients with renal disease: Time for action

Patient Navigation: A Culturally Competent Strategy to Address Disparities in Palliative Care