Methods and approaches to facilitate inclusion of the views, perspectives and preferences of people with moderate-to-severe dementia in research: A narrative systematic review.

BACKGROUND: The perspectives of people with moderate-to-severe dementia are rarely directly elicited in research studies. OBJECTIVES: This systematic review will explore methods and approaches for including the perspectives and preferences of people with moderate-to-severe dementia in research. METHODS: AgeLine, CINAHL, Embase, PsycINFO, PubMed, Social Policy and Practice and Web of Science were searched until June 16 2022. Study quality was assessed using the 16-item Quality Assessment Tool. We described specific communication tools, reviewed the evidence for their effectiveness and considered their strengths and limitations. We examined the more general communication skills and techniques applied to support the use of these tools using thematic synthesis. The review protocol was registered with PROSPERO CRD42019130386 and the review was conducted and reported according to PRISMA guidelines. RESULTS: Seven studies reported in 11 publications were included. In these studies five specific communication tools were used: Talking Mats, Augmentative and Alternative Communication Flexiboard, generic photographs in combination with a preference placement board, consultation ballot and personalised communication prescriptions. Each tool identified had advantages and disadvantages depending on dementia severity, verbal or physical ability, expense, researcher training requirements and ease of use. Thematic synthesis identified five general approaches to optimising communication that were employed to support use of the tools: ensuring conversations are individual and person-centred, managing external influences, engaging others, creating structure and facilitation skills. CONCLUSION: All tools had some utility and there was no clear evidence to support the recommendation of any one specific tool; therefore, researchers are advised to select the tool most appropriate to their context. IMPLICATIONS FOR PRACTICE: The findings offer general guidance for researchers and practitioners on how to facilitate communication with people with moderate-to-severe dementia.

Truthfulness and the person living with dementia: Embedded intentions, speech acts and conforming to the reality.

Highly reputable bodies have said that lying is to be avoided when speaking with people living with dementia, unless it cannot be. And yet, the evidence is that many professionals looking after people who live with dementia have been lying to them. I wish to consider an underlying philosophical justification for the moral position that allows lying under some circumstances whilst still condemning it generally. It can seem difficult to ignore the immorality of lying, but thinkers have developed arguments to get around the absolute prohibition. I shall argue that in concrete circumstances the object and the intended end of an action are not as clearly distinct as has been presumed. Further, looking at how language functions allows us to appeal to speech acts and to see the illocutionary force of a statement as way to broaden its purview. We need not think that the only options are between lying and not lying; there is also the possibility, in exigent circumstances, of 'conforming to the reality', which would allow a more nuanced account of moral acts, where the intentional nature of the act is no longer to lie. There are, thus, extreme concrete circumstances where not to speak the truth may be excusable, even if regrettable.

Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems.

BACKGROUND: Decision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems. AIM: This study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta. METHOD: The study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis. RESULTS: Four themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient's dignity. CONCLUSION: Decision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

Citizenship and authenticity in dementia: A scoping review.

This is a scoping review of the notions of authenticity and citizenship in the context of understanding dementia. Authenticity suggests being true to yourself. Social citizenship suggests engagement, relationships and rights. The literature which links authenticity to dementia is scanty, albeit the notion suggests numerous possibilities. The literature on citizenship and dementia is more extensive. After some conceptual discussion, the literature is reviewed. The authenticity literature focuses on people being themselves, on partnerships and on decision-making. There is also literature on how carers of people living with dementia might be more authentic or genuine. Over against the possibility that the demands of citizenship might swamp the drive to individual authenticity, the review shows that, in line with authenticity being a social virtue, it is implied or conveyed by much of the literature on citizenship, in particular by the characterization of citizenship in terms of coherence (and thus narrative), vitality, maturity and depth.

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

BACKGROUND: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. METHODS: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. DISCUSSION: IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

Resuscitation decisions at the end of life: medical views and the juridification of practice.

BACKGROUND: Concerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking. AIM: To analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors. DESIGN: The data presented in this paper were collected as part of a wider research study of end-of-life care in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach. RESULTS: Discussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways. CONCLUSIONS: This paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient's wishes and preferences. Recommendations for future research are made and legal ramifications are discussed.

Chaining, culture and values: ethical issues in research in middle- and low-income countries.

A paper in this month's British Journal of Psychiatry reports on research from Ghana where some participants were exposed to chaining, which raises ethical concerns. Strict boundaries need to exist between researchers and cruel, inhuman or degrading treatment. Nevertheless, there may be things we can learn from other cultures about our own values. Declaration of interest None.

End-of-life care: A qualitative study comparing the views of people with dementia and family carers.

BACKGROUND: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. AIM: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. DESIGN: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. SETTING/PARTICIPANTS: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England. FINDINGS: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. CONCLUSION: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

Consent for the diagnosis of preclinical dementia states: A review.

It is now possible to detect the pathology of Alzheimer's disease (AD) many years before symptoms and signs otherwise become manifest. Biomarkers of disease include evidence of amyloid and tau in the cerebrospinal fluid and neuroimaging which (for instance) allows amyloid in the brain to be visualized. There is, thus, a preclinical state in which it is possible to identify Alzheimer's pathology long before there is clinical evidence of disease. Much research focuses on this preclinical state because it seems likely that treatments will be more effective before the disease is established. This means that researchers can discover Alzheimer's pathology some years before the person is at risk of developing the condition. In memory clinics, too, people may present with early (prodromal) symptoms which do not yet amount to a dementia syndrome (e.g. mild cognitive impairment), yet biomarker evidence that dementia is highly likely to develop. This is problematic because people will be required to consent to the disclosure of findings that indicate an uncertain risk of an alarming disease. We carried out a scoping review of the issues that arise in connection with a "diagnosis" of preclinical dementia. We identified four themes in the literature: stigma; ethical issues; psychological burden; and language. We shall discuss these themes and related issues that emerge to do with meaning, medicalization, virtues and values. More research is now required to understand these issues in detail, where the emphasis should be on the breadth of research, which must be biopsychosocial and ethical.

A process evaluation of a Psychomotor Dance Therapy Intervention (DANCIN) for behavior change in dementia: attitudes and beliefs of participating residents and staff.

BACKGROUND: In a previous paper, we presented results from a 12-week study of a Psychomotor DANCe Therapy INtervention (DANCIN) based on Danzón Latin Ballroom that involves motor, emotional-affective, and cognitive domains, using a multiple-baseline single-case design in three care homes. This paper reports the results of a complementary process evaluation to elicit the attitudes and beliefs of home care staff, participating residents, and family members with the aim of refining the content of DANCIN in dementia care. METHODS: An external researcher collected bespoke questionnaires from ten participating residents, 32 care home staff, and three participants' family members who provided impromptu feedback in one of the care homes. The Behavior Change Technique Taxonomy v1 (BCTTv1) provided a methodological tool for identifying active components of the DANCIN approach warranting further exploration, development, and implementation. RESULTS: Ten residents found DANCIN beneficial in terms of mood and socialization in the care home. Overall, 78% of the staff thought DANCIN led to improvements in residents' mood; 75% agreed that there were improvements in behavior; 56% reported increased job satisfaction; 78% of staff were enthusiastic about receiving further training. Based on participants' responses, four BCTTv1 labels-Social support (emotional), Focus on past success and verbal persuasion to boost self-efficacy, Restructuring the social environment and Habit formation-were identified to describe the intervention. Residents and staff recommended including additional musical genres and extending the session length. Discussions of implementing a supervision system to sustain DANCIN regularly regardless of management or staff turnover were suggested. CONCLUSIONS: Care home residents with mild to moderate dementia wanted to continue DANCIN as part of their routine care and staff and family members were largely supportive of this approach. This study argues in favor of further dissemination of DANCIN in care homes. We provide recommendations for the future development of DANCIN based on the views of key stakeholder groups.

The basis, ethics and provision of palliative care for dementia: A review.

Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

Conceptual issues in 'cognitive impairment'.

PURPOSE OF REVIEW: This review aims to set out the recent writings relevant to acquired cognitive impairment in an attempt to reveal some of the underlying conceptual issues. RECENT FINDINGS: The huge strides being taken to diagnose Alzheimer's and other dementias early, including pre-symptomatically, raise important ethical issues. But there are broader conceptual issues too, around the notion of normal ageing. New techniques, such as deep brain stimulation, raise further ethical concerns, but may be relevant to deeper philosophical issues. Meanwhile, capacity continues to be of interest to researchers in the field of cognitive impairment, but the 'United Nations Convention on the Rights of Persons with Disabilities' is raising questions about our understanding of the nature of capacity. These new ideas reflect shifts in our understanding of personhood. How we think about the person is relevant to how we think about dilemmas over artificial nutrition and is also pertinent to debates about rational suicide in response to a diagnosis of dementia. A person-centred view allows us to think more broadly about cognitive impairment. SUMMARY: Cognitive impairment challenges us to think broadly, to see such impairment as something to be dealt with in the context of our multifaceted life-worlds.

Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital.

BACKGROUND: A significant proportion of patients in an acute hospital is made up of older people, many of whom have cognitive impairment or dementia. Rightly or wrongly, if a degree of confusion is apparent, it is often questioned whether the person is able to return to the previous place of residence. We wished to understand how, on medical wards, judgements about capacity and best interests with respect to going home are made for people with dementia and how decision-making around hospital discharge for people with dementia and their families might be improved. Our research reflects the jurisdiction in which we work, but the importance of residence capacity rests on its implications for basic human rights. METHODS: The research employed a ward-based ethnography. Observational data were captured through detailed fieldnotes, in-depth interviews, medical-record review and focus groups. Themes and key issues were identified using constant comparative analysis of 29 cases. Theoretical sampling of key stakeholders was undertaken, including patients with dementia (with and without residence capacity), their relatives and a range of practitioners. The research was carried out in three hospital wards (acute and rehabilitation) in two hospitals within two National Health Service (NHS) healthcare trusts in the North of England over a period of nine months between 2008 and 2009. RESULTS: Our analysis highlights the complexity of judgements about capacity and best interests in relation to decisions about place of residence for people with dementia facing discharge from hospital. Five key themes emerged from data: the complexity of borderline decisions; the requirement for better understanding of assessment approaches in relation to residence capacity; the need for better documentation; the importance of narrative; and the crucial relevance of time and timing in making these decisions. CONCLUSIONS: We need: more support and training for practitioners, as well as support for patients and families; clarity about the information to be imparted to the person with dementia; more advocacy for people with dementia; appropriate assessments embedded in routine clinical practice; the patient with dementia to be centre-stage; and properly resourced step-down or rehabilitation units to facilitate timely and good decision-making about place of residence.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.