Julian C. Hughes

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.

A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia

BACKGROUND advance care planning (ACP) allows a patient to state their preferences for care, so that if in future they cannot make decisions their wishes are known. Our aim was to review systematically the effectiveness of ACP interventions in people with cognitive impairment and dementia. METHODS systematic searches of key electronic databases, supplemented by hand searches of reference lists and consultation with experts. Two independent reviewers undertook screening, data extraction and quality assessment. RESULTS four studies were included; three allocated providers randomly to intervention or control arm. All took place in nursing homes. Three studies reported formal processes of capacity assessment, only up to 36% of participants were judged to have capacity. Three studies reported positive findings in terms of documentation of patient preferences for care. Two studies reported significant reductions in hospitalisation rates; a third found increased use of hospice services in the intervention group. A meta-analysis could not be carried out due to heterogeneity of outcome measures. CONCLUSIONS there is limited evidence for the effectiveness of ACP in people with cognitive impairment/dementia in terms of ACP documentation and health-care use. In terms of capacity to discuss ACP, nursing home settings may be too late for people with dementia.

Types of centredness in health care: themes and concepts.

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that defined or discussed the notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters.

A qualitative study: professionals' experiences of advance care planning in dementia and palliative care, 'a good idea in theory but ...'.

Background: Advance care planning comprises discussions about an individual’s wishes for future care while they have capacity. Aim: To explore professionals’ experiences on the implementation of advance care planning in two areas of clinical care, dementia and palliative care. Design: Qualitative study, focus groups and individual interviews. Setting: North East of England. Sample: Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. Results: Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance care planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of advance care planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care planning were legally binding; the array of different advance care planning forms and documentation available added to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added challenge. Conclusions: This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.

Views of the person with dementia

In this paper I consider, in connection with dementia, two views of the person. One view of the person is derived from Locke and Parfit. This tends to regard the person solely in terms of psychological states and his/her connections. The second view of the person is derived from a variety of thinkers. I have called it the situated-embodied-agent view of the person. This view, I suggest, more readily squares with the reality of clinical experience. It regards the person as embedded in a history and culture. The human person is also an embodied agent. I contend that this view encourages a more appropriate approach towards the ethical issues that arise in dementia and towards people with dementia.

Electronic tagging of people with dementia who wander

Once again the issue of using electronic tagging to safeguard older people who wander has attracted media attention.1 It is tempting to see the arguments as simply two sided—one side stressing the need to ensure safety and the other waving the banners of civil liberties and human rights. We think that this is not simply a factual matter but one that touches important values to do with respect for people. The correct position, therefore, is to face the complex dilemma. Decisions about limiting a persons liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier.In electronic tagging the tag is usually a wristband. The circuitry in the tag may either set off a boundary alarm or emit a radio signal that allows the wearer to be tracked down by means of a hand held detector. The problem of wandering in dementia is not trivial. It causes stress to carers, referrals to psychiatric services and hospital admissions, problems in the hospital …

Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

BackgroundDespite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.MethodsTo identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.ResultsInterviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patients perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.ConclusionThis exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.

End-of-life care and dementia

In the UK, research continues to confirm that people with certain chronic illnesses, such as chronic lung disease and cardiac failure, represent the ‘disadvantaged dying’ compared to those with terminal cancer. But what is the situation for people dying with advanced dementia and what is the experience of their carers? Practical guidance for clinicians is scarce. In Standard 7 of the National Service Framework for Older People, which covers mental health, there is mention neither of how care should be provided nor of how patient choice should be ensured for people with dementia at the end of life. In the UK, 5% of the population aged 65 and over and 20% of those aged 80 and over have dementia similar prevalence figures are found in the USA. Current predictions suggest that the number of people with dementia will increase by 40% by 2026 and will double by 2050. The increased demand for end-of-life care for people with dementia will be associated with major social and economic costs, but what is the current standard of such care? How can the quality be improved? And how should future services be configured to cope with this increasing need? In this paper, we review current knowledge around end-of-life care in dementia, discuss the clinical challenges and ethical dilemmas presented to carers, consider the difficulties in delivering such care and suggest practical approaches to improve the quality of such care.

Magnetic resonance imaging differences between dementia with Lewy bodies and Alzheimer's disease; a pilot study

BACKGROUND Temporal lobe atrophy on magnetic resonance imaging (MRI) has been suggested as a specific diagnostic marker for Alzheimers disease (AD). No previous comparison with dementia with Lewy bodies (DLB) has been reported. METHOD T1-weighted MRI scans were performed on 11 subjects with AD (nine with NINCDS/ADRDA probable AD and two with neuropathologically proven AD) and nine subjects with DLB (four with probable DLB diagnosed by clinical criteria and five with neuropathologically proven DLB). Groups were matched for age, duration of illness and cognitive test score. Two raters, blind to diagnosis and neuropathological findings, measured the volumes of the frontal lobes, temporal lobes, hippocampi, parahippocampal gyri, amygdalae, and caudate nuclei using a computerized volumetric analysis system. Scans were also rated for medial temporal atrophy on a four-point scale by an experienced rater. RESULTS AD subjects had significantly smaller left temporal lobes and parahippocampal gyri than those with DLB. Medial temporal atrophy was present in 9/11 AD cases (82%) and absent in 6/9 (67%) of DLB cases. Two neuropathologically confirmed cases of DLB had severe medial temporal atrophy; both had concurrent AD-type pathology in the temporal lobe (Braak stage 4). CONCLUSIONS This pilot study supports the hypothesis that a greater burden of pathology centres on the temporal lobes in AD compared with DLB, except in DLB cases with concurrent Alzheimer pathology. A larger study is needed to confirm these findings and to determine whether MRI has a role in assisting with the clinical differentiation between DLB and AD.

Dancing as a psychosocial intervention in care homes: a systematic review of the literature

There is a need to find meaningful and engaging interventions to improve mood and behaviour for residents of care homes. The demand on care staff might diminish opportunities for them to encourage these activities. Staff anecdotal information attests that dancing as an activity improves mood in residents and staff. Hence, the importance of investigating what dancing brings to the care home social environment.