Understanding how people with Parkinson's disease and their relatives approach advance care planning.

PURPOSE: Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson's disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning. METHODS: Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England. RESULTS: Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) 'Awareness'-which included the limited awareness on purpose of advance care planning and Parkinson's disease; (2) 'Uncertainty'-the uncertainty of living with PD and of life; and (3) 'Salience'-the complex decision-making processes that interviewees engaged in, which were highly variable. CONCLUSION: The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study.

BACKGROUND: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson's disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. METHODS: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. RESULTS: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. CONCLUSION: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Training interventions to improve general hospital care for older people with cognitive impairment: systematic review.

BACKGROUND: In response to increasing numbers of older people in general hospitals who have cognitive impairment such as dementia and delirium, many hospitals have developed education and training programmes to prepare staff for this area of clinical practice.AimsTo review the evidence on educational interventions on hospital care for older people with cognitive impairment. METHOD: A mixed methods systematic review and narrative synthesis was undertaken. The following electronic databases were searched: Medline, Embase, CINAHL, PsycINFO, EBM Reviews, ASSIA and Scopus, as well as Health Management Information Consortium (HMIC), ProQuest, PubMed and SCIE: Social Care Online. Initial searches were run in August 2014 (update search September 2016). Titles and abstracts of studies retrieved were screened independently. The full text of eligible studies were then independently assessed by two review team members. All included studies were assessed using a standard quality appraisal tool. RESULTS: Eight studies relating to delirium, six on dementia and two on delirium and dementia were included, each testing the use of a different educational intervention. Overall, the quality of the studies was low. In relation to delirium, all studies reported a significant increase in participants' knowledge immediately post-intervention. Two of the dementia studies reported an increase in dementia knowledge and dementia confidence immediately post-intervention. CONCLUSIONS: The variety of outcomes measured makes it difficult to summarise the findings. Although studies found increases in staff knowledge, there is insufficient evidence to conclude that educational interventions for staff lead to improved patient outcomes.Declaration of interestNone.

Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences.

OBJECTIVES: The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. DESIGN: Qualitative study using task group methodology and thematic data analysis. SETTING: Task groups were held either at the university (n=5) or at a carers' centre (n=1). PARTICIPANTS: A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. RESULTS: Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rather than specifically on dementia. Participants emphasised the need to ensure informed consent prior to use of proactive approaches and to provide appropriate support. They also suggested alternative approaches that could potentially facilitate the early detection of dementia or reduce risk at a population level. CONCLUSIONS: As international policy on dementia shifts towards a prevention agenda there is growing interest in identifying those at risk of developing dementia. This study provides useful insights into the acceptability of the use of such proactive approaches among the public. The introduction of proactive approaches to dementia identification raises complex practical and ethical issues, particularly in the context of low public understanding of dementia. The importance of better quality information about dementia (and the likelihood of developing dementia) and provision of psychological support for those undergoing risk assessment were highlighted.

Cognitive stimulation therapy in dementia care: exploring the views and experiences of service providers on the barriers and facilitators to implementation in practice using Normalization Process Theory.

BACKGROUND: Cognitive stimulation therapy (CST) is an evidence-based, cost-effective psychosocial intervention for people with dementia but is currently not a standard part of post-diagnostic care. This qualitative study explored the views and experiences of dementia care providers on the barriers and facilitators to its implementation in usual care. METHOD: Thirty four semi-structured interviews (24 participants) were conducted across four dementia care sites in the North of England; ten were follow-up interviews. Data were analyzed using thematic analysis and then mapped to the Normalization Process Theory framework. RESULTS: Participants considered CST a "good fit" with their "preferred" ways of working and goals of dementia care namely the provision of person-centered services. For facilitators delivering the intervention, compared to other behavioral interventions, CST was seen to offer benefits to their work and was easy to understand as an intervention. Training in CST and seeing benefits for clients were important motivators. Time and resources were crucial for the successful implementation of CST. Participants were keen to objectively measure benefits to participants but unsure how to do this. CONCLUSIONS: CST is a cost-effective psychosocial intervention for people with dementia, recommended by national guidance. Despite our findings which show that, using the NPT framework, there are more facilitators than barriers to the implementation of CST, it is still not a standard part of post-diagnostic dementia care. Further research is needed to explore the reasons for this implementation gap in ensuring evidence-based care in translated into practice.

When walking becomes wandering: representing the fear of the fourth age.

Dementia is linked to behavioural changes that are perceived as challenging to care practices. One such behavioural change is 'wandering', something that is often deeply feared by carers and by people with dementia themselves. Understanding how behavioural changes like wandering are experienced as problematic is critically important in current discussions about the behavioural and psychological symptoms of dementia. In this article we draw on our secondary analysis of qualitative interviews and focus groups with carers of people with dementia to critically question 'when does walking become wandering'? Drawing on theoretical perspectives from anthropology, sociology and human geography to explore experiences of carers and of people with dementia, we argue that a conceptual shift occurs in how pedestrian activity, usually represented as something purposeful, meaningful and healthy (walking) is seen as something threatening that needs managing (wandering). We demonstrate how this shift is connected to cultural assumptions about the mind-body relationship in both walking and in dementia. We further argue that the narratives of carers about wandering challenge the notion of 'aimless' walking in the fourth age. This is because, as these narratives show, there are often pronounced links to specific areas and meaningful places where people with dementia walk to.

Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews.

BACKGROUND: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. METHODS: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. RESULTS: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness. CONCLUSIONS: Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable.

Patients' experiences of a multidisciplinary team-led community case management programme: a qualitative study.

OBJECTIVES: To explore the views and experiences of patients on the care they have received while enrolled on the Northumberland High Risk Patient Programme (NHRPP). This programme involved case finding of frail patients using a multidisciplinary team (MDT)-led community case management programme, and support of patients through care planning and regular reviews using primary, community, secondary and social care professionals. DESIGN: A qualitative study using semistructured interviews, which were digitally recorded, transcribed and subject to thematic analysis. SETTING: Community patients receiving primary care in the county of Northumberland, England. PARTICIPANTS: 23 participants took part, of which 16 were patients enrolled on the NHRPP, and 7 carers. GP practices were selected purposively by size, deprivation and location, and patients identified and invited by General Practitioners to participate. RESULTS: 4 main themes emerged from the data: awareness and understanding of the NHRPP, confidence in the primary healthcare team, limitations of home care and the active role of being a patient. Despite having a low level of awareness of the details of the NHRPP, participants did think that its broad aim made sense. Participants discussed their high level of satisfaction with their care and access to team members. However, some limitations of alternatives to hospital care were identified, including the need to consider psychological as well as medical needs, the importance of overnight care and the needs of those without informal carers. Finally, participants discussed the active nature of being a patient under the NHRPP if they were to contribute fully to planning and managing their own care. CONCLUSIONS: This study has identified that a programme of MDT-led case management was generally very well received by patients and their families. However, a number of factors were identified that could improve the implementation of the programme and further research needs to be undertaken to address these.

Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study.

OBJECTIVES: To explore the views and experiences of people with dementia, their family carers and general practitioners (GPs) on their knowledge and experience of accessing information about, and use of, assistive technology (AT) in dementia care. DESIGN: Qualitative methods with semistructured interviews and thematic analysis. PARTICIPANTS: 56 participants comprising 17 GPs, 13 people with dementia and 26 family carers. SETTING: Community care settings in the North East of England. RESULTS: 4 main themes emerged: awareness and experience of AT; accessing information on AT; roles and responsibilities in the current care system and the future commissioning of AT services. All participants had practical experience of witnessing AT being used in practice. For people with dementia and their families, knowledge was usually gained from personal experience rather than from health and social care professionals. For GPs, knowledge was largely gained through experiential, patient-led learning. All groups acknowledged the important role of the voluntary sector but agreed a need for clear information pathways for AT; such pathways were perceived to be essential to both service providers and service commissioners. CONCLUSIONS: People with dementia and their family carers appear to be mainly responsible for driving a gradual increase in both awareness and the use of AT in dementia care. GPs should be equipped with the relevant knowledge to ensure families living with dementia receive appropriate information and support to enable them to live independently for as long as possible. There is an urgent need to simplify current complex community care pathways; as demonstrated in other chronic health conditions, a single point of access and a named lead professional may improve future care.

Understanding interprofessional education as an intergroup encounter: The use of contact theory in programme planning.

A key underlying assumption of interprofessional education (IPE) is that if the professions are brought together they have the opportunity to learn about each other and dispel the negative stereotypes which are presumed to hamper interprofessional collaboration in practice. This article explores the application of contact theory in IPE with reference to eight evaluation studies (1995-2012) which adopted this theoretical perspective. It proposes that educators should pay explicit attention to an intergroup perspective in designing IPE programmes and specifically to the "contact variables" identified by social psychologists studying intergroup encounters. This would increase the chances of the planned contact having a positive effect on attitude change.

New Ways of Working in UK mental health services: developing distributed responsibility in community mental health teams?

BACKGROUND: This paper examines the introduction and operation of a number of support roles in mental health services. This is done in the context of concerns about the effectiveness of CMHTs. AIMS: Three questions are addressed: the degree to which concern for the work of consultant psychiatrists informed the introduction of the new roles; what the reforms implied for the work of the psychiatrist and those in new roles; and the impact of any changes on the operation of CMHTs. METHOD: Data were collected as part of a national-level evaluation. The main means of collection was the semi-structured interview. RESULTS: The study shows: that reform was underpinned by concerns about the workload of psychiatrists; and that while in principle the responsibilities of the psychiatrist were to be distributed across other team members, those in new roles felt themselves to be isolated. CONCLUSIONS: Despite the intentions of policy, the creation of the new roles did little to extend the idea of distributed responsibility in CMHTs.

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study.

BACKGROUND: Assistive Technology (AT) has been suggested as a means by which people with dementia can be helped to live independently, while also leading to greater efficiencies in care. However little is known about how AT is being used by people with dementia and their carers in their daily routines. This paper reports on a qualitative study exploring the everyday use of AT by people with dementia and their families. METHODS: The research employed a qualitative methodology. Semi structured interviews took place with 39 participants, 13 people with dementia and 26 carers. Key themes were identified using thematic analysis and the constant comparative method. RESULTS: Three categories of AT use in everyday settings were identified; formal AT, accessed via social care services, 'off the shelf AT' purchased privately, and 'do it yourself' AT, everyday household products adapted by families to fulfil individual need in the absence of specific devices. Access to AT was driven by carers, with the majority of benefits being experienced by carers. Barriers to use included perceptions about AT cost; dilemmas about the best time to use AT; and a lack of information and support from formal health and social care services about how to access AT, where to source it and when and how it can be used. CONCLUSIONS: It has been argued that the 'mixed economy' landscape, with private AT provision supplementing state provision of AT, is a key feature for the mainstreaming of AT services. Our data suggests that such a mixed economy is indeed taking place, with more participants using 'off the shelf' and 'DIY' AT purchased privately rather than via health and social care services. However this system has largely arisen due to an inability of formal care services to meet client needs. Such findings therefore raise questions about just who AT in its current provision is working for and whether a mixed market approach is the most appropriate provider model. Everyday technologies play an important role in supporting families with dementia to continue caring; further research is needed however to determine the most effective and person-centred models for future AT provision.

Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning.

BACKGROUND: Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia. METHOD: This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically. RESULTS: People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare. CONCLUSIONS: Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

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.

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.

Molecular Imaging and Pharmacokinetic Analysis of Carbon-11 Labeled Antisense Oligonucleotide LY2181308 in Cancer Patients.

Antisense oligonucleotides (ASOs) have potential as anti-cancer agents by specifically modulating genes involved in tumorigenesis. However, little is known about ASO biodistribution and tissue pharmacokinetics (PKs) in humans, including whether sufficient delivery to target tumor tissue may be achieved. In this preliminary study in human subjects, we used combined positron emission and computed tomography (PET-CT) imaging and subsequent modeling analysis of acquired dynamic data, to examine the in vivo biodistribution and PK properties of LY2181308 - a second generation ASO which targets the apoptosis inhibitor protein survivin. Following radiolabeling of LY2181308 with methylated carbon-11 ([(11)C]methylated-LY2181308), micro-doses (<1mg) were administered to three patients with solid tumors enrolled in a phase I trial. Moderate uptake of [(11)C]methylated-LY2181308 was observed in tumors (mean=32.5ng*h /mL, per mg administered intravenously). Highest uptake was seen in kidney and liver and lowest uptake was seen in lung and muscle. One patient underwent repeat analysis on day 15 of multiple dose therapy, during administration of LY2181308 (750mg), when altered tissue PKs and a favorable change in biodistribution was seen. [(11)C]methylated-LY2181308 exposure increased in tumor, lung and muscle, whereas renal and hepatic exposure decreased. This suggests that biological barriers to ASO tumor uptake seen at micro-doses were overcome by therapeutic dosing. In addition, (18)F-labeled fluorodeoxyglucose (FDG) scans carried out in the same patient before and after treatment showed up to 40% decreased tumor metabolism. For the development of anti-cancer ASOs, the results provide evidence of LY2181308 tumor tissue delivery and add valuable in vivo pharmacological information. For the development of novel therapeutic agents in general, the study exemplifies the merits of applying PET imaging methodology early in clinical investigations.

Patient preferences for future care--how can Advance Care Planning become embedded into dementia care: a study protocol.

BACKGROUND: People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice. METHODS/DESIGN: The four phase project comprises a systematic review (Phase 1) and a series of qualitative studies (Phases 2 and 3), with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4). DISCUSSION: In the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the study will also develop practical tools, which are grounded in practice, for all relevant stakeholders to enable the facilitation of timely and sensitive ACP discussions.

Vitiligo following a combined liver-kidney transplant.

We report an Afro-Caribbean male who developed vitiligo 10 days following a combined liver-kidney transplant from a Caucasian donor. Neither the donor nor the recipient had any previous history of vitiligo, nor of autoimmunity. The depigmentation gradually resolved by 8 weeks post-transplant with topical corticosteroids and standard maintenance immunosuppression. We propose that the skin depigmentation occurred due to the destruction of melanocytes by donor-derived alloreactive cytotoxic T-lymphocytes or antibody transferred during transplantation. Although vitiligo has been described in patients receiving allogeneic bone marrow transplantation for haematological malignancy, there are no previous reports of vitiligo post-solid organ transplantation.

Practice-based interprofessional education: looking into the black box.

This paper reports on part of the evaluation of "The Common Learning Programme in the North East", which offered practice-based interprofessional education (IPE) to pre-qualification students. A realistic evaluation approach was used and data collection methods included interviews and observations in an attempt to look into "the black box" of practice-based IPE. The contexts of the sessions covered a number of clinical settings and involved a range of participants. Mechanisms included the content of the sessions and the procedures involved. Findings illustrate the complex and unpredictable ways in which discussions arise and evolve during IPE sessions and how interplay exists both between the contexts and the mechanisms, and between knowledge types. Issues are raised regarding the facilitation of IPE and the influence of the current evidence-based movement on research types. This study highlights the complexity and unpredictability of practice-based IPE and the usefulness of research approaches that look into the black box of educational practice.