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.

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

The aesthetic approach to people with dementia.

The question I wish to consider is: how do we approach people with dementia? I want to suggest that the approach we take should be the aesthetic one. I shall need to say what this is. My question is not an empirical one.

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.

'Y' feel me?' How do we understand the person with dementia?

As dementia progresses problems of understanding emerge. Eventually spoken language can be lost. And yet, even into the severer stages of dementia, close carers can often understand the person in a variety of ways.

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.

Philosophical issues in dementia.

Purpose Of Review: This review aims to consider the philosophical literature from the last 18 months relevant to dementia. Philosophical thought should underpin and strengthen developments in clinical practice. For instance, deepening our thoughts about personhood should support the development of person-centred care.

Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: comparing practice with legal standards.

Background: This article stems from a larger project which considers ways of improving assessments of capacity and judgements about best interests in connection with people with dementia admitted to acute hospitals with respect to decisions about place of residence.

Aims: Our aim is to comment on how assessments of residence capacity are actually performed on general hospital wards compared with legal standards for the assessment of capacity set out in the Mental Capacity Act, 2005 (MCA).

Method: Our findings are grounded in ethnographic ward-based observations and in-depth interviews conducted in three hospital wards, in two hospitals (acute and rehabilitation), within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009.

Pain and distress in advanced dementia: choosing the right tools for the job.

Objective: There is a concern that pain is under-recognized in dementia. However, there may be other causes of distress. We wished to evaluate the utility of a distress tool and a pain tool.