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As both human longevity and diagnostic ability improve, more individuals are being diagnosed with Alzheimer’s dementia disease (Alzheimer’s). Yet there is a paucity of new Alzheimer’s research trials. One obstacle to research is the large number of Alzheimer’s patients deemed incapable of providing informed consent for clinical research. Research advance directives (RADs) offer patients the opportunity to provide informed consent before incapacity occurs. However, critics question whether RADs guarantee informed consent, claiming that due to the nature of the disease, the consenting agent is no longer the same person after becoming incapacitated. This paper assesses the debate while using a conception of personhood, informed by the latest Alzheimer’s research, which does not reduce the concept of personhood to psychological capacities. It explains how personal identity can persist despite Alzheimer’s, such that RADs can and should suffice for informed consent.
Agitation and aggression occur in up to half of people living with dementia over the course of the disease. Although non-pharmacological interventions are used as first-line treatment strategies, antipsychotics may be indicated in severe cases. A major adverse effect of antipsychotics in dementia is stroke; the mechanism of action of atypical antipsychotic risperidone has been linked to cardiovascular disease (CVD) biological pathways in preclinical studies.
Aims
To evaluate the risk of stroke associated with risperidone across different patient subgroups defined by stroke and CVD history.
Method
Anonymised primary care data from the UK-based Clinical Practice Research Datalink were used to identify individuals diagnosed with dementia after the age of 65 years between 2004 and 2023. Risk of stroke over 1 year was compared between individuals initiating risperidone and propensity-score-matched controls across subgroups with and without history of stroke and any CVD.
Results
In the overall cohort (28 403 risperidone users and 136 324 mtatched controls), risperidone was associated with increased risk of stroke (adjusted hazard ratio: 1.28; 95% CI: 1.20–1.37). In the risperidone user group, the incidence rate of stroke was substantially higher in those with a prior history of stroke (incidence rate: 222 per 1000 person-years) and CVD (incidence rate: 94.1 per 1000 person-years) than in the overall cohort (incidence rate: 53.3 per 1000 person-years). Relative risks related to risperidone were similar across all CVD and stroke subgroup comparisons (hazard ratios between 1.23 and 1.44).
Conclusions
People with dementia with a prior history of CVD are at a significant increased risk of stroke, and risperidone further exacerbates this risk. Moreover, risperidone increases risk of stroke in patients without a prior history of CVD. This quantification of stroke risk across subgroups with and without history of CVD may help with communication of risk and aid more judicious prescribing.
End-of-life care in the Emergency Department (ED) can be a challenge. Defining goals of care in dementia patients may be more complex. The quality of ED medical records is relevant for better care in the last hours or days of life. In this article, we explore the identification of last days of life recognition in ED records of dementia patients.
Methods
Retrospective qualitative review of ED medical records of patients with dementia in the last 7 days of life using reflexive thematic analysis. This study was conducted at a university tertiary hospital, with a 24 h/7 days polyvalent ED. All 2021 ED medical records of dementia patients who presented to the ED within the last 7 days of their lives were included.
Results
More than 1 in 4 patient’s medical records (n = 55, 27,4%) made no explicit reference to the identification of last days of life and only 2 medical records contained this specific designation. Most relevant issues presented under three broader themes: (I) diagnosis and prognosis concerning the last days or hours of life; (II) goals of care, medical decisions and communication about care in the last days or hours of life; and (III) comfort and needs assessment in the last days of life of patients with dementia in the ED.
Significance of results
There is limited identification of the last days or hours of life in ED medical records and clinical notes are of poor-quality regarding communication and shared decision making.
Alert systems can engage the community to help locate missing persons with dementia. Evidence on the impact of implemented alert systems is minimal. Guided by three adapted Knowledge-to-Action Framework phases: identifying the problem, assessing barriers, and evaluating outcomes, this study aimed to examine understandings about alert systems and their implementation in Canada, Scotland, and the United States. A document review and interviews conducted with 40 interest holders (those with lived experience, first responders, service providers, and policymakers) underwent thematic analysis. Findings revealed variability in alert systems implementation and barriers at individual (limited understanding of alert systems, privacy concerns, alert fatigue) and organizational levels (sustainability, accessibility, privacy legislation). Participants recommended the following for successful implementation of alert systems: clear policy, collaboration, ongoing assessment, and a localized, opt-in system with accessibility, public education, and sustainable funding. This information indicates under what conditions alert systems for missing persons with dementia could be implemented.
Schizophrenia spectrum disorders confer an increased and earlier dementia diagnosis risk, but the relative timing and course of cognitive decline compared to individuals with affective disorders is unclear.
Methods
This retrospective study used de-identified electronic patient records to compare cognitive trajectories from the first recorded MMSE, representing the earliest cognitive concerns in relation to a possible dementia syndrome, and subsequent dementia risk between patients with a schizophrenia spectrum and primary affective disorder diagnosis. Patients had at least two MMSE scores recorded at least 6 months apart. We examined annual MMSE change from the first recorded MMSE, dementia risk, dementia subtypes, and rates of dementia assessment and treatment.
Results
Compared to affective disorders (n = 2,264; 71.1 years), schizophrenia spectrum disorders (n = 1,217; 65.0 years) showed earlier initial MMSE scores (by 6.1 years, 95% CI = 5.2–7.0), earlier dementia diagnoses (by 2.3 years, 95% CI = 0.9–3.7) but lower dementia risk (adjusted HR = 0.81; 95% CI = 0.69–0.95). Cognitive decline rates and dementia subtype diagnoses did not differ between affective and schizophrenia spectrum disorders, but it took longer for schizophrenia spectrum disorder patients to receive a dementia diagnosis (5.6 vs. 4.4 years). Anti-dementia medication was less likely to be prescribed in patients with schizophrenia versus depression.
Conclusions
Cognitive concerns in older individuals with schizophrenia spectrum disorders arise from around 63 years and are associated with earlier dementia risk versus older individuals with affective disorders. Findings emphasize the importance of targeted dementia prevention and treatment strategies in these individuals and the need to reduce the existing inequity of access to dementia services.
The trajectory of Mild Cognitive Impairment (MCI) to dementia within primary care is not well understood.
Objective
We investigated the 5-year trajectory of patients initially diagnosed with MCI, evaluated their risk of developing dementia considering age, sex, and Montreal Cognitive Assessment (MoCA) test scores and determined the annual conversion rate from MCI to dementia for patients assessed in a MINT (Multispecialty Interprofessional Team) memory clinic.
Methods
We conducted a longitudinal cohort study using a retrospective chart review of 751 patients assessed within a MINT memory clinic in Ontario, Canada. The conversion rate from MCI to dementia was estimated with the Kaplan-Meier method. Cox regression examined time to dementia diagnosis and the association between baseline MoCA scores and dementia risk.
Findings
The observed 5-year conversion rate from MCI to dementia was 28.0%, though with limited follow-up data. Accounting for missing data, the estimated 5-year conversion rate was 48.8% (39.5%, 59.2%) with an average annual rate of 9.8%. Each one-point increase in MoCA score at initial visit was associated with a 10% lower rate of conversion to dementia (aHR: 0.90, 95%CI: 0.85-0.96).
Discussion
Findings highlight the profile of patients assessed in MINT clinics, cognitive trajectory of those diagnosed with MCI, and the importance of primary care-based memory clinics in early detection and intervention.
People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal, by directing cessation of manually assisted feeding and drinking.
While many dementia directives have been published, most have gaps and omissions that thwart the goal of avoiding extended intolerable life in advanced dementia. To overcome these problems, we formulated a new dementia directive. This article explains the value of this new directive. We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.
Voluntary assisted dying (VAD) is an end-of-life care option available to eligible Australians living with a terminal condition, though people living with dementia are typically ineligible to choose VAD as part of their end-of-life care. In order to develop equitable research-informed policy and practice, it is crucial to include the perspectives of all key stakeholders, including living experience experts whose voices are currently excluded from Australian VAD research. This study aims to capture the perspectives of people living with dementia by exploring their VAD-related needs and preferences. The study is grounded in a critical and phenomenological conceptual framework that prioritizes inclusive research design. Thirty-six people living with dementia in Australia self-selected to participate in an online survey. It found that the vast majority of participants wanted the option to access VAD themselves, and most wanted provisions for accessing VAD through advance care directives. Through open text responses, the participants expressed many concerns about potential end-of-life suffering and loss of dignity, with their VAD preferences often aligned with their wish to maintain autonomy and human rights. This is the first known Australian study to explore VAD from the perspective of people living with dementia, providing critical insights into their experiences as stakeholders in a highly contested policy and practice environment that is dominated by medico-legal voices. Centring on people living with dementia challenges misconceptions about their capacity to contribute to VAD research, demonstrating their importance as living experience experts and key stakeholders with clear needs and preferences for their end-of-life care.
Most persons living with dementia in Canada reside at home, relying on support from family and/or friends as caregivers. Evidentially, knowledge gaps exist when trying to understand how caregivers and persons living with dementia can be better supported in their community and health care environments. This research examined the effect of aging in place with a focus on providing a comprehensive understanding of the barriers to aging in place for persons living with dementia and their caregivers using the social-ecological model. Fourteen caregivers were recruited to participate in one-on-one semi-structured interviews. The subsequent theme, they do not make it easy, emphasizes issues faced with community and societal domains of aging in place care. These findings shed light on the unmet needs of persons living with dementia and their caregivers while aging in place, as well as the need to address systemic barriers to sincerely promote aging in place for all persons.
Howard CH Khoe, National Psychiatry Residency Programme, Singapore,Cheryl WL Chang, National University Hospital, Singapore,Cyrus SH Ho, National University Hospital, Singapore
Chapter 51 covers the topic of old age psychiatry. Through a case vignette with topical MCQs for consolidation of learning, readers are brought through the management of elderly patients with psychiatric disorders from first presentation to subsequent complications of the conditions and its treatment. Things covered include the general principles of prescribing in elderly patients with psychiatric disorders, the use of covert administration of medications, the use of medications in patients with neurocognitive disorders and variations in the presentation of depression.
1. How do you feel about caring for someone with dementia? 2. What are the human rights issues in this story? 3. What role does empathy play when caring for someone with dementia? 4. What are the issues for you when one sibling wants their elderly mother to have homecare and the other to send her to a care home? 5. What issues of service co-ordination arise from the story? 6. What are the safeguarding issues in this story?
Cognitive intra-individual variability (IIV) is a neuropsychological marker reflecting divergent performance across cognitive domains. In this brief communication, we examined whether clinical severity, apolipoprotein E (APOE) ε4 carriers, and higher polygenic risk were associated with higher cognitive IIV, and whether higher polygenic risk and cognitive IIV synergistically influence clinical severity.
Method:
This large study involved up to 24,248 participants (mean age = 72) from the National Alzheimer’s Coordinating Center (NACC) and multiple regression controlling for age, sex, and education was used to analyze the data.
Results:
We found that disease severity (B = 0.055, SE = 0.001, P < 0.001), APOE ε4 carriers (B = 0.02, SE = 0.003, P < 0.001), and higher polygenic risk (B = 0.02, SE = 0.004, P < 0.001) were associated with higher cognitive IIV. Polygenic risk and cognitive IIV also interacted to influence clinical severity, beyond APOE ε4 (B = 0.11, SE = 0.05, P = 0.02), such that individuals with high polygenic risk and cognitive IIV had the greatest clinical severity.
Conclusions:
Heightened polygenic risk and increased cross-domain cognitive variation are implicated in dementia and may impact clinical decline in tandem.
To examine the knowledge, experience and attitudes of nurses working in nursing homes in relation to the administration of antipsychotic medications to individuals diagnosed with behavioural and psychological symptoms of dementia (BPSD).
Methods:
Questionnaires comprising 17 questions were distributed to 120 nurses working in nursing homes to evaluate their knowledge of and attitudes to the utilisation of antipsychotic medication for BPSD.
Results:
Of the 70 nurses who completed the study questionnaire, 68 (97.1%) were confident with their knowledge of managing BPSD symptoms in dementia patients; 49 (70.0%) stated that antipsychotic medications were associated with a noticeable improvement in BPSD symptoms (n = 49, 70.0%) and were mostly commenced at an appropriate stage of the patients illness (n = 47, 67.1%). Music therapy was the most commonly noted (58.6% of nurses) utilised alternative therapy, although only 46% nursing staff reported that there were sufficient alternative therapies available. Qualitative themes of note included the importance of communication between nursing staff, health professionals and family members and an ongoing requirement for training nursing staff regarding antipsychotic prescribing and dispensing in BPSD.
Conclusions:
Nurses working in nursing homes demonstrated confidence in their knowledge of treatment strategies in managing BPSD in dementia patients. However, concerns were expressed regarding the limited availability of non-pharmacological interventions.
The ability to manage money is essential for independent functioning but highly sensitive to cognitive decline. Managing money involves more than deploying skills rationally; it is influenced by a range of emotional and psychosocial factors. There is relatively little knowledge about how older adults, families and care professionals working with older people navigate and experience potential challenges of declining mental capacity to manage money. This article draws on a UK-based study involving 13 older people and/or family members and 28 social sector professionals, and their experiences of supporting older people with cognitive decline to manage money, triangulated with public information resources from major national organisations across the health, care, consumer and charity sectors. It focuses on the emotive and personal nature of cognitive decline and money management. Declining mental capacity to manage money can strike at the core of people’s sense of who they are, leading to strong tensions and difficulties in discussing support. Support to manage money is often framed in discussions as ‘there if we need it’; this can be reassuring for people, but may be challenged if there are subsequent disagreements and changes in perspectives about the detail and timing of support. These nuances are not well reflected in public information resources, which largely emphasise administrative procedure. Financial organisations may lack empathy that declining mental capacity to manage money is extremely challenging. The article highlights a greater need for recognition of the emotional and psychosocial complexities presented by declining mental capacity to manage money in later life.
Recent years have seen increasing interest in social robots, including pet robots, and their use in the care of people with dementia. Most research has focused on formal care-givers’ perspectives. There is a lack of qualitative research on the use of social robots in embedded practice and how people with dementia react to and interact with social robots. This study explores the use of pet robots in everyday life in a nursing home for people with dementia and how playfulness and disruptions characterized many interactions among the people with dementia, the pet robots and the researcher. It draws on five months of ethnographic fieldwork in a Danish nursing home for people with dementia including 11 residents, 13 staff members and 3 family members. We found that pet robots opened people up for playful interactions, allowing people with dementia to express themselves and have fun in a way that flattened hierarchies and enabled these individuals to be active instigators of joyful interactions. In the article, we argue that agency is distributed and that residents, robots, researchers and other actors both instigate and disrupt playful interactions. Playful interactions in the nursing home can be fun and rebellious in an everyday life that is otherwise focused on fitting in and keeping calm. Therefore, playfulness and fun can be viewed as a way of coping with institutional life. Further, playful interactions with pet robots can provide opportunities for residents to be active instigators rather than merely passive recipients of care and activities.
The use of artificial intelligence (AI) in psychiatry holds promise for diagnosis, therapy, and the categorization of mental disorders. At the same time, it raises significant theoretical and ethical concerns. The debate appears polarized, with proponents and critics seemingly irreconcilably opposed. On the one hand, AI is heralded as a transformative force poised to revolutionize psychiatric research and practice. On the other hand, it is depicted as a harbinger of dehumanization. To better understand this dichotomy, it is essential to identify and critically examine the underlying arguments. To what extent does the use of AI challenge the theoretical assumptions of psychiatric diagnostics? What implications does it have for patient care, and how does it influence the professional self-concept of psychiatrists?
Methods
To explore these questions, we conducted 15 semi-structured interviews with experts from psychiatry, computer science, and philosophy. The findings were analyzed using a structuring qualitative content analysis.
Results
The analysis focuses on the significance of AI for psychiatric diagnosis and care, as well as on its implications for the identity of psychiatry. We identified different lines of argument suggesting that expert views on AI in psychiatry hinge on the types of data considered relevant and on whether core human capacities in diagnosis and treatment are viewed as replicable by AI.
Conclusions
The results provide a mapping of diverse perspectives, offering a basis for more detailed analysis of theoretical and ethical issues of AI in psychiatry, as well as for the adaptation of psychiatric education.
Group cognitive stimulation therapy (CST) has been shown to improve cognition and quality of life of people with dementia in multiple trials, but there has been scant research involving people with intellectual disability and dementia. This study aimed to assess the feasibility of conducting a randomised controlled trial of group CST for this population.
Aims
To assess the feasibility of participant recruitment and retention, the appropriateness of outcome measures, and the feasibility of group CST (adherence, fidelity, acceptability), as well as the feasibility of collecting data for an economic evaluation.
Method
Participants were recruited from six National Health Service trusts in England and randomised to group CST plus treatment as usual (TAU) or TAU only. Cognition, quality of life, depression, and use of health and social care services were measured at baseline and at 8–9 weeks. Qualitative interviews with participants, carers and facilitators were used to explore facilitators of and barriers to delivery of CST. Trial registration number: ISRCTN88614460.
Results
We obtained consent from 46 participants, and 34 (73.9%) were randomised: 18 to CST and 16 to TAU. All randomised participants completed follow-up. Completion rates of outcome measures (including health economic measures) were adequate; 75.7% of sessions were delivered, and 56% of participants attended ten or more. Fidelity of delivery was of moderate quality. CST was acceptable to all stakeholders; barriers included travel distance, carer availability and sessions needing further adaptations. The estimated cost per participant of delivering CST was £602.
Conclusions
There were multiple challenges including recruitment issues, a large dropout rate before randomisation and practical issues affecting attendance. These issues would need to be addressed before conducting a larger trial.