Cancer treatment decisions for people living with dementia: Experiences of family carers, a qualitative interview study.

BACKGROUND: As the UK population ages, the prevalence of both dementia and cancer will increase. Family carers of people with dementia who are subsequently diagnosed with cancer are often involved in treatment decisions about cancer. These decisions are uniquely challenging. OBJECTIVES: To explore the experience of carers involved in cancer treatment decisions for people with dementia. DESIGN: A cross-sectional qualitative interview study with inductive thematic analysis. SETTING AND PARTICIPANTS: Sixteen carers of people with dementia were identified via Primary Care Research Networks and the Join Dementia Research database. RESULTS: Three main themes were derived: 'already at breaking point', which describes the extreme strain that carers were already under when the cancer diagnosis was made; 'maintaining the status quo', which describes how despite the gravity of a cancer diagnosis, avoiding further dementia-related deterioration was of prime importance; and 'LPA', which explores the benefits and frustrations of the use of lasting powers of attorney. DISCUSSION: Current services are ill-equipped to deal with people who have a combination of dementia and cancer. Proxy decisions about cancer care are made in the context of carer stress and exhaustion, which is exacerbated by shortcomings in service provision. CONCLUSIONS: As the prevalence of comorbid cancer and dementia rises, there is an urgent need to improve services that support carers with proxy health care decision-making. PATIENT OR PUBLIC CONTRIBUTION: The study design was codeveloped with a local dementia-specific patient and public involvement (PPI) group. A project-specific PPI group was formed with support from the Alzheimer's Society Research Partnership scheme to provide further bespoke input.

Resistance narratives in patients' accounts of a mandatory pre-operative health optimisation scheme: A qualitative study.

Background: Pre-operative Health Optimisation is the engagement of patients in health behavior change, such as smoking cessation and weight reduction prior to surgery. Programmes which routinely delay surgery while some patients undergo preoperative optimisation are increasingly used within the UK. Advocates of this approach argue that it reduces perioperative risk and encourages longer term change at a teachable moment. However, critics have argued that mandatory preoperative optimisation schemes may perpetuate or exacerbate inequalities. Aim: To understand patients' experience of a mandatory preoperative optimisation scheme at the time of referral for elective surgery. Design and setting: Qualitative interview study in one area of the UK. Method: Participants were recruited through GP practices and participating weight-loss schemes. Data was collected from nine semi-structured face-to-face interviews. Thematic analysis was informed by the concept of narratives of resistance. Results: Four forms of resistance were found in relation to the programme. Interviewees questioned the way their GPs presented the scheme, suggesting they were acting for the health system rather than their patients. While interviewees accepted personal responsibility for health behaviors, those resisting the scheme emphasized that the wider system carried responsibilities too. Interviewees found referral to the scheme stigmatizing and offset this by distancing themselves from more deviant health behaviors. Finally, interviewees emphasized the logical contradictions between different health promotion messages. Conclusion: Patients described negative experiences of mandatory pre-operative health optimisation. Framing them as resistance narratives helps understand how patients contest the imposition of optimisation and highlights the risk of unintended consequences.

Support needs of carers making proxy healthcare decisions for people with dementia: a systematic review based on the Noblit and Hare meta-ethnographic synthesis of qualitative studies.

BACKGROUND: There are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers. OBJECTIVE: The objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia. DESIGN: A qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs. DATA SOURCES: A search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO). ELIGIBILITY CRITERIA: Fifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions. DATA EXTRACTION AND SYNTHESIS: Two independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team. RESULTS: From the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner. CONCLUSIONS: This meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia. PROSPERO REGISTRATION NUMBER: CRD42020124485.

Cancer treatment decisions for people living with dementia: experiences of family carers.

BACKGROUND: Dementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone's closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time. AIM: To explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs. METHOD: The authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes. RESULTS: The authors expect to have completed 14-18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence. CONCLUSION: This study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

A case study of long-term cognitive and social functioning following a right temporal lobectomy in infancy.

We present the rare case of an adult patient, FS, who had a right anterior temporal lobe resection during infancy to treat intractable epilepsy, and underwent a cognitive evaluation 19 years later. Given the paucity of literature on long-term outcomes for infants who receive neurosurgery for epilepsy, this case provides valuable information for both clinicians and patients. What little literature exists on infant and child surgical outcomes for epilepsy suggests a variable course, with several areas of possible cognitive and social difficulty. FS's assessment at the age of 21 revealed only mild difficulties with memory, sequencing, and visual imagery, and spared intellectual functioning, working memory, problem-solving and social cognition, along with a high level of socioeconomic functioning. Thus, the case of FS suggests that neurosurgery during infancy is not necessarily associated with large-scale cognitive impairment, and furthermore, that high levels of functioning both educationally and vocationally are possible after surgical treatment of epilepsy in infancy.

Differential role of the orbital frontal lobe in emotional versus cognitive perspective-taking.

Lesions of the orbital frontal lobe, particularly its medial sectors, are known to cause deficits in empathic ability, whereas the role of this region in theory of mind processing is the subject of some controversy. In a functional magnetic resonance imaging study with healthy participants, emotional perspective-taking was contrasted with cognitive perspective-taking in order to examine the role of the orbital frontal lobe in subcomponents of theory of mind processing. Subjects responded to a series of scenarios presented visually in three conditions: emotional perspective-taking, cognitive perspective-taking and a control condition that required inferential reasoning, but not perspective-taking. Group results demonstrated that the medial orbitofrontal lobe, defined as Brodmann's areas 11 and 25, was preferentially involved in emotional as compared to cognitive perspective-taking. This finding is both consistent with the lesion literature, and resolves the inconsistency of orbital frontal findings in the theory of mind literature.

Social and emotional competence in traumatic brain injury: new and established assessment tools.

Chronic social/emotional deficits are common in moderate to severe traumatic brain injury (TBI), leading to significant functional difficulties. Objective, quantitative tools for assessing social/emotional competence are an important adjunct to cognitive assessments. We review existing social/emotional measures, conclude that theory of mind tests are not adequate for clinical assessments of social competence, and explain the development and piloting of novel measures in a small group of moderate to severe TBI patients (N = 16) and non-brain-damaged controls (N = 16). The novel measures are the Global Interpersonal Skills Test (GIST), a questionnaire measuring informant-rated social skills; the Assessment of Social Context (ASC), a video-based task examining understanding of others' emotions, attitudes, and intentions; the Social Interpretations Test, a social framing task based on Heider and Simmel ( 1944 ); and Awareness of Interoception, a heartbeat-detection paradigm related to physiological self-awareness. In a MANOVA, other-rated social skills (GIST), ASC, and Awareness of Interoception scores were significantly lower for TBI patients than controls. ASC, r(31) = .655, and Social Interpretations, r(31) = .460, scores were significantly correlated with informant-rated social skills (GIST). We encourage clinicians to add social/emotional measures to assessments of TBI patients.

Consequences, action, and intention as factors in moral judgments: an FMRI investigation.

The traditional philosophical doctrines of Consequentialism, Doing and Allowing, and Double Effect prescribe that moral judgments and decisions should be based on consequences, action (as opposed to inaction), and intention. This study uses functional magnetic resonance imaging to investigate how these three factors affect brain processes associated with moral judgments. We find the following: (1) Moral scenarios involving only a choice between consequences with different amounts of harm elicit activity in similar areas of the brain as analogous non-moral scenarios; (2) Compared to analogous non-moral scenarios, moral scenarios in which action and inaction result in the same amount of harm elicit more activity in areas associated with cognition (such as the dorsolateral prefrontal cortex) and less activity in areas associated with emotion (such as the orbitofrontal cortex and temporal pole); (3) Compared to analogous non-moral scenarios, conflicts between goals of minimizing harm and of refraining from harmful action elicit more activity in areas associated with emotion (orbitofrontal cortex and temporal pole) and less activity in areas associated with cognition (including the angular gyrus and superior frontal gyrus); (4) Compared to moral scenarios involving only unintentional harm, moral scenarios involving intentional harm elicit more activity in areas associated with emotion (orbitofrontal cortex and temporal pole) and less activity in areas associated with cognition (including the angular gyrus and superior frontal gyrus). These findings suggest that different kinds of moral judgment are preferentially supported by distinguishable brain systems.