UK Dementia Research Articles

FENS-Kavli winter symposium: Addressing the cellular phase of dementia-visions of the UK Dementia Research Institute.

This is a short report summarising the plenary talk by Professor Bart de Strooper, at the 2017 FENS‐Kavli winter symposium. We have tried to capture some of the key points in his lecture on dementia research and we discuss his vision for the new UK Dementia Research Institute (UK DRI). In his talk, Prof. de Strooper encourages us to focus on the multicellular influence on brain dysfunction in dementia and we summarise how the UK DRI is a timely and ambitious, collaborative endevour, aiming to conquer dementia.

RESEARCH PARTICIPANT PERSPECTIVES ON RECRUITMENT FROM EXISTING COHORTS IN DEMENTIAS PLATFORM U.K.

Dementias Platform UK (DPUK) is a large-scale national investment in the dementias research infrastructure. Collaborating with 30+ longitudinal cohort studies, DPUK aims to enhance dementias data science and experimental research by facilitating access to high quality data and explore the possibility of recruiting well-characterised, data-rich participants to further research. DPUK has the potential to affect existing cohorts and their participants’ experience of dementias research, in particular around governance, data use and extended research participation. A dedicated ELSI workgroup conducted a study of ethical and social implications of the DPUK, with attention to the experiences, views and expectations of participants within cohort studies. Participant work was developed using a grounded theory approach as part of a four-phase cross-cohort qualitative study on the ethical and social implications of the development of DPUK. Six focus groups were conducted with members of three DPUK participating cohorts in England and Scotland. Participants discussed six research scenarios: three based on data science, and three based on experimental research. Group sessions were followed by face to face in-depth interviews on experiences and expectations of research. Participants reacted positively to projects on data sharing and re-contact for further research involvement. However, there were specific concerns around the involvement of commercial research partners and study intensity. Willingness to be re-contacted for research did not correspond directly with willingness to take part in studies, where there was a more diverse range of responses. The freedom to refuse involvement was central to the acceptability of re-contact, however, participants self-identified as highly willing to consider participating. Their motivation to participate in further research related to themes such as social responsibility, cohort trust and commitment, altruism, health anxiety, and improved personal and familial access to health care. Participant's views on participating in future dementia research are diverse and situated within wider social contexts. Participants value attempts to enhance UK dementia research, and the opportunity to express their views on these developments. Incorporating participant perspectives into research policy and practice can contribute to ensuring social acceptability and accountability.

INEQUALITIES IN RECEIPT OF MENTAL AND PHYSICAL HEALTH CARE IN PEOPLE WITH DEMENTIA IN THE U.K.: ROLE OF SOCIOECONOMIC STATUS, GENDER AND ETHNICITY

UK Dementia Strategies prioritise fair access to mental and physical healthcare. We investigate whether there are inequalities by deprivation, gender or ethnicity in healthcare received by people with dementia, and compared healthcare received by people with and without dementia. We investigated primary care records of 68, 061 community dwelling dementia patients and 259,337 people without dementia (2002–13). We tested hypotheses that people with dementia from more deprived areas, and who are women receive more psychotropic medication, fewer surgery consultations, are less likely to receive annual blood pressure, weight monitoring and an annual review, compared with those from less deprived areas and men. Only half of people with dementia received a documented annual review. Deprivation was not associated with healthcare received. Compared to men with dementia, women with dementia had lower rates of surgery consultations (adjusted IRR 0.90, 95% CI 0.90–0.91), of annual blood pressure monitoring (adjusted IRR 0.96, 95% CI 0.95–0.97) and of annual weight monitoring (adjusted IRR 0.91, 95% CI 0.90–0.93). Men with dementia were less likely to be taking psychotropic medication than women with dementia. People with dementia had fewer surgery consultations and were less likely to have their weight and blood pressure monitored at least annually, compared to the non-dementia group. We will present new findings regarding the relationship of ethnic group to receiving a dementia diagnosis and healthcare received. People with dementia, in particular women, appear to receive less primary health care, but take more psychotropic medication that may negatively impact their physical health. Reducing these inequalities and improving access of people with dementia to preventative healthcare could improve the health of people with dementia.

Let's unite for Dementia Week

Nursing and Residential CareVol. 19, No. 5 EditorialLet's unite for Dementia WeekJulie HeathcoteJulie HeathcoteSearch for more papers by this authorJulie HeathcotePublished Online:12 Apr 2017https://doi.org/10.12968/nrec.2017.19.5.248AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Alzheimer's Society (2012) Five things you should know about dementia. http://bit.ly/2lAnBYw (accessed 27 March 2017) Google ScholarAlzheimer's Society (2017) Dementia Awareness Week. http://bit.ly/2nEB84e (accessed 27 March 2017) Google ScholarDementia Friends (2016) How organisations can get involved. http://bit.ly/2nY3wir (accessed 27 March 2017) Google ScholarDementia UK (2016) Dementia Awareness Week 2016 report. http://bit.ly/1U97EUb (accessed 27 March 2017) Google Scholar FiguresReferencesRelatedDetails 2 May 2017Volume 19Issue 5ISSN (print): 1465-9301ISSN (online): 2052-2932 Metrics History Published online 12 April 2017 Published in print 2 May 2017 Information© MA Healthcare LimitedPDF download

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations.

There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016; and (3) hand-searches of reference lists of relevant systematic reviews from database searches. The project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We divided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. We included 149 papers from the 22,918 papers screened, referring to 125 individual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer's Disease Assessment Scale - Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. Most of the trials included participants with Alzheimer's disease, so recommendations may not apply to other types of dementia. We did not conduct economic analyses. The PPI consultation was limited to members of the Alzheimer's Society Research Network. Cognitive outcomes and biological markers form the core outcome set for future disease modification trials, measured by the MMSE or ADAS-Cog, and structural MRI in a subset of participants. We envisage that the core set may be superseded in the future, particularly for other types of dementia. There is a need to develop an algorithm to compare scores on the MMSE and ADAS-Cog. The project was registered with Core Outcome Measures in Effectiveness Trials [ www.comet-initiative.org/studies/details/819?result=true (accessed 7 April 2016)]. The systematic review protocol is registered as PROSPERO CRD42015027346. The National Institute for Health Research Health Technology Assessment programme.

Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventions

BackgroundDementia is a national priority and this research addresses the Prime Minister’s commitment to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research Institute. In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with dementia themselves, on the lives of their family carers and on services, and costs the nation £26B per year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050. People with dementia lose much more than just their memory and their daily living skills; they can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can be seen as a burden by society, by their families and even by themselves, and may feel unable to contribute to society. This programme of research aims to find useful interventions to improve the quality of life of people with dementia and their carers, and to better understand how people with dementia can be supported at home and avoid being admitted to hospital.Objectives(1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test the HTP in practice and to conduct an exploratory trial.Methods(1) The MCST programme was developed for people with dementia based on evidence and qualitative work. A randomised controlled trial (RCT) [with a pilot study of MCST plus acetylcholinesterase inhibitors (AChEIs)] compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation study conducted a trial of outreach compared with usual care, and assessed implementation in practice. (2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and components, was developed by systematically reviewing the literature and qualitative studies including consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing.Results(1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs. It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups following a 1-day training course, but that outreach support helps staff go on to run maintenance groups and may also improve staff sense of competence in dementia care. The study of CST in practice found no change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the quality of life of people with dementia but at an excessively high cost. (3) Case management for people with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of managing crises, staff suggested more costly interventions, carers liked education and support, and people with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for people with dementia.LimitationsGiven constraints on time and funding, we were unable to compete the exploratory trial of the HTP package or to conduct an economic evaluation.Future researchTo improve the care of people with dementia experiencing crises, a large-scale clinical trial of the home treatment manual is needed.ConclusionThere is an urgent need for effective psychosocial interventions for dementia. MCST improved quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care research may improve the lives of millions of people across the world.Trial registrationsCurrent Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST implementation) and ISRCTN37956201 (CSP/RYCT).FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 5. See the NIHR Journals Library website for further project information.

How policy can help develop and sustain workforce capacity in UK dementia research: insights from a career tracking analysis and stakeholder interviews

ObjectivesTo identify research support strategies likely to be effective for strengthening the UK's dementia research landscape and ensuring a sustainable and competitive workforce.DesignInterviews and qualitative analysis; systematic internet search to...

ADDRESSING THE CHALLENGE OF WORKFORCE CAPACITY IN DEMENTIA RESEARCH

Dementia currently affects 850,000 people in the UK, devastates families and costs the UK economy an estimated £26 billion a year. After decades of underfunding, investment in dementia research in increasing, but there are still too few researchers working on the condition. A small research workforce may limit the progress that can be made in all fields of investigation, including aetiology, treatment development, care and public health. Alzheimer’s Society commissioned RAND Europe to conduct an independent review of the UK dementia research landscape with a particular emphasis on the current research capacity challenges and policy strategies to address them. RAND Europe’s review used three methods: (i) a bibliometric analysis of UK dementia research; (ii) a tracing exercise of dementia PhDs from the British Library to estimate retention of researchers in the field; (iii) in-depth interviews to investigate workforce strengths and gaps in more depth. These three streams of work were combined to develop a set of ten policy recommendations for building capacity within the UK dementia research workforce. Bibliometric analysis identified the UK as second in the world in terms of the number of dementia research publications produced. There is a shortage of people completing PhDs in dementia, with five times fewer theses completed compared to those in cancer fields. There is also a lack of security and career progression for early career researchers, with at least 70% of recent PhDs leaving the field within 4 years. In biomedical dementia research, there is a particular lack of opportunities for those at the mid-career stage, whereas in clinical and care professions, the opportunity gap is mostly at the early career stage where people will enter into research for the first time. Significantly more academic, clinical and care researchers must be brought into the dementia to find new, innovative ways for our health and social care systems to support the increasing number of people living with dementia. This work has developed ten policy recommendations to inform future strategies aimed at building a large and diverse dementia research community in the UK. Reference: Marjanovic et al. (2015) RAND Europe report

UK dementia care − new thinking on funding needed?

UK dementia care − new thinking on funding needed?

Conversational assessment in memory clinic encounters: interactional profiling for differentiating dementia from functional memory disorders

Objectives: In the UK dementia is under-diagnosed, there is limited access to specialist memory clinics, and many of the patients referred to such clinics are ultimately found to have functional (non-progressive) memory disorders (FMD), rather than a neurodegenerative disorder. Government initiatives on ‘timely diagnosis’ aim to improve the rate and quality of diagnosis for those with dementia. This study seeks to improve the screening and diagnostic process by analysing communication between clinicians and patients during initial specialist clinic visits. Establishing differential conversational profiles could help the timely differential diagnosis of memory complaints.Method: This study is based on video- and audio recordings of 25 initial consultations between neurologists and patients referred to a UK memory clinic. Conversation analysis was used to explore recurrent communicative practices associated with each diagnostic group.Results: Two discrete conversational profiles began to emerge, to help differentiate between patients with dementia and functional memory complaints, based on (1) whether the patient is able to answer questions about personal information; (2) whether they can display working memory in interaction; (3) whether they are able to respond to compound questions; (4) the time taken to respond to questions; and (5) the level of detail they offer when providing an account of their memory failure experiences.Conclusion: The distinctive conversational profiles observed in patients with functional memory complaints on the one hand and neurodegenerative memory conditions on the other suggest that conversational profiling can support the differential diagnosis of functional and neurodegenerative memory disorders.

Diagnosis and management of dementia in family practice

Background: Improving quality of care for people with dementia is a high priority. Considerable resources have been invested in financial incentives, guideline development, public awareness and educational programmes to promote earlier diagnosis and better management.Objectives: Evaluating family physicians’ concordance with guidelines on diagnosis and management of people with dementia, from first documentation of symptoms to formal diagnosis.Method: Analysis of medical records of 136 people with dementia recruited by 19 family practices in NW London and surrounding counties.Results: Practices invited 763 people with dementia to participate, 167 (22%) agreed. Complete records were available for 136 (18%). The majority of records included reference to recommended blood tests, informant history and caregiver concerns. Presence or absence of symptoms of depression, psychosis, other behavioural and psychological symptoms of dementia, and cognitive function tests were documented in 30%–40% of records. Documentation of discussions about signs and symptoms of dementia, treatment options, care, support, financial, legal and advocacy advice were uncommon. Comparison of these findings from a similar study in 2000–2002 suggests improvements in concordance with blood tests, recording informant history, presence or absence of depression or psychosis symptoms. There was no difference in documenting cognitive function tests. Immediate referral to specialists was more common in the recent study.Conclusion: Five years after UK dementia guidelines and immediately after the launch of the dementia strategy, family physicians appeared concordant with clinical guidelines for dementia diagnosis (other than cognitive function tests), and referred most patients immediately. However, records did not suggest systematic dementia management.

Care pathways for dementia: current perspectives.

Uncertainty appears to typify the experience of living with dementia. With an uncertain illness trajectory and unpredictable levels of deterioration and stability in symptoms, people with a diagnosis of dementia may live with uncertainty and anxiety and find it hard to make plans or decisions for their future. People with memory problems and caregivers seeking a diagnosis of dementia may also potentially find themselves navigating a labyrinth-like maze of services, practitioners, assessments, and memory tests, with limited understanding of test scores and little information about what support is available. In this context of uncertainty, the apparent clarity and certainty of a “dementia care pathway” may be attractive. However, the term “dementia care pathway” has multiple and overlapping meanings, which can potentially give rise to further confusion if these are ill-defined or a false consensus is presumed. This review distinguishes four meanings: 1) a mechanism for the management and containment of uncertainty and confusion, useful for the professional as well as the person with dementia; 2) a manual for sequencing care activities; 3) a guide to consumers, indicating eligibility for care activities, or a guide to self-management for dementia dyads, indicating the appropriateness of care activities; and 4) a manual for “walking with” the person. Examples of these approaches are presented from UK dementia services with illustrations of existing care pathways and associated time points, specifically focusing on: 1) early symptom identification and first service encounters, 2) assessment process, 3) diagnostic disclosure, 4) postdiagnostic support, and 5) appropriate interventions. We review the evidence around these themes, as well as discuss service pathways and referral routes used by some services in England and internationally. We conclude that the attraction of the term “care pathway” is seductive, but caution is needed in taking shared understandings for granted.

Tackling dementia: a new approach.

British Journal of Community NursingVol. 19, No. 6 Services UpdateTackling dementia: a new approachGwyn GroutGwyn GroutSearch for more papers by this authorGwyn GroutPublished Online:1 Jun 2014https://doi.org/10.12968/bjcn.2014.19.6.298AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Alzheimer's Research UK (2014) Dementia statistics. http://tinyurl.com/7h7w7b5 (accessed 16 May 2014) Google ScholarNHS Choices (2013) About dementia. NHS dementia guide. http://tinyurl.com/m8fhr9x (accessed 16 May 2014) Google Scholar FiguresReferencesRelatedDetails 2 June 2014Volume 19Issue 6ISSN (print): 1462-4753ISSN (online): 2052-2215 Metrics History Published online 1 June 2014 Published in print 2 June 2014 Information© MA Healthcare LimitedPDF download

Feasibility study of an optimised person-centred intervention to improve mental health and reduce antipsychotics amongst people with dementia in care homes: study protocol for a randomised controlled trial

BackgroundPeople living in care homes often have complex mental and physical health problems, disabilities and social needs which are compounded by the use of psychiatric and other drugs. In the UK dementia care is a national priority with a vast impact on services. WHELD combines the most effective elements of existing approaches to develop a comprehensive but practical intervention. This will be achieved by training care staff to provide care that is focused on an understanding of the individual and their needs; and by using additional components such as exercise, activities and social interaction to improve mental health and quality of life (QoL) and reduce the use of sedative drugs.DesignWork Package 3 (WP3) is the pilot randomised trial and qualitative evaluation to help develop a future definitive randomised controlled clinical trial. The study design is a cluster randomised 2x2x2 factorial design with two replications in 16 care homes. Each care home is randomized to receive one of the eight possible permutations of the four key interventions, with each possible combination delivered in two of the 16 homes. Each cluster includes a minimum of 12 participants (depending upon size of the care home, the number of people with dementia and the number consenting).DiscussionThe overarching goal of the programme is to provide an effective, simple and practical intervention which improves the mental health of, and reduces sedative drug use in, people with dementia in care homes and which can be implemented nationally in all UK care homes as an NHS intervention.Trial RegistrationCurrent controlled trials ISRCTN40313497

Why do ethnic elders present later to UK dementia services? A qualitative study

Western policy initiatives prioritize early diagnosis of dementia, but minority ethnic (ME) people currently present later to dementia specialist care than their indigenous counterparts. In order to allow the development of rational interventions, we completed this first study to explore the link between attitudes to help-seeking for dementia and the help-seeking pathway in the ME and indigenous population. We purposively recruited a maximum variation sample comprising 18 family carers of people with dementia from the major UK ethnic groups. We used semi-structured interviews to determine the barriers to and facilitators of help-seeking, and the pathways to diagnosis. Two researchers independently coded interviews and recruitment continued until theoretical saturation was reached. ME carers, in contrast to the indigenous population, tended to delay help-seeking until they could no longer cope or until others commented on the problems. They often thought that families should look after their own elders and a diagnosis alone was purposeless. This appeared to relate to beliefs about the etiology of cognitive impairment, negative beliefs about psychiatry and their sense of familial responsibility. ME carer beliefs were an important barrier to early diagnosis. Further work should explore whether an intervention can modify these attitudes, so that families understand that a diagnosis may allow planning and avoidance of crises; rather than signifying a failure in duty, disloyalty, or relinquishing of the caring role. Further research should focus on developing interventions to tackle barriers to help-seeking in ethnic minorities so that healthcare access can be equitable for all.

Housing and dementia care - a scoping review of the literature

This paper reports the findings of a scoping study designed to describe the evidence base with regard to housing provision for elderly people with dementia with the aim of identifying gaps in existing knowledge. This report from the scoping study findings covers studies of housing and accommodation in relation to dementia that have been published in the UK since the early 1980s, although we draw on limited aspects of overseas research to illuminate issues missing from the UK research agenda. The results reveal a significant number of research gaps in the UK context, most notably in relation to end-of-life care for people with dementia and the effectiveness of integrated and segregated facilities. UK policy regarding the development of extra-care housing also neglects the long-term future of people with dementia. A more robust evidence base will be required, combining a variety of methodological approaches, if UK dementia research is to contribute to future housing policy developments.

UK Dementia Incidence Doesn't Vary across Sites with Known Variation in Vascular Risk

UK Dementia Incidence Doesn't Vary across Sites with Known Variation in Vascular Risk

What is person-centred care in dementia?

The term person-centred care has become all-pervasive on the UK dementia care scene. It has been suggested that it has become synonymous with good quality care. It seems that any new approach in dementia care has to claim to be pc (person-centred) in order to be P.C. (politically correct). The term is used frequently in the aims and objectives for dementia care services and provision in the UK and the US, although what lies behind the rhetoric in terms of practice may be questionable.