Dementia Strategy Research Articles

“it’s the one-size-fits-all approach”: Differing experiences of formal dementia home and community care in ireland

Background: Access to formal dementia care services varies widely within and across European countries. This paper presents Irish data from one study within the Access to Timely Formal Care (Actifcare) JPND-funded research project. The study explored the personal experiences, and perceived barriers or facilitators in accessing formal home- and community-based health and social care systems from the perspectives of people with dementia. Methods: An exploratory qualitative design with purposive sampling was used. Two focus groups were conducted with people with dementia already using, or having previously tried to access, formal care. The first took place with older participants who attended a dementia-specific day centre in a central Dublin neighbourhood (n=3; mean age = 83.7). The second comprised of younger participants with early onset dementia from urban and rural locations in Ireland (n=4, mean age = 57.3). Discussions followed an agreed structure, were tape-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged across the groups with regard to: (1) The Impact of a Dementia Diagnosis, (2) Service Availability and Acceptability, (3) Education and Awareness, (4) Capacity and Rights, (5) The Impact of Caring on the family, and (6) Best Practice. Although participants differed in their awareness of the personal impact of dementia, all expected to remain living at home and in control of their lives for as long as possible. Two diverse views emerged in relation to service availability and two distinctly different experiences with formal dementia services were evident. Younger narratives focused on barriers to care and experiences were predominately negative, while positive experiences were more common among older participants who particularly enjoyed opportunities for social interaction. Conclusions: The results support the increasing body of evidence that highlights the very clear gaps that exist between the formal home- and community-based care that is available in Ireland, and the care advocated for by an increasingly diverse population of people living with dementia. These findings are interpreted in the context of Irish health and social care structures and recommendations are made in light of the recent publication of the Irish National Dementia Strategy.

WHY IS INTEGRATED CARE NOT WORKING IN END OF LIFE CARE FOR THOSE WITH ADVANCED DEMENTIA? FROM THE HEALTH CARE PROFESSIONAL PERSPECTIVE

IntroductionIn line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with...

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.

South Asian older adults with memory impairment: improving assessment and access to dementia care.

With increasing international migration, mental health care of migrants and ethnic minorities is a public health priority. South Asian older adults experience difficulties in accessing services for memory impairment, dementia and mental illness. This review examines barriers and facilitators in the pathway to culturally appropriate mental health care. Web of Knowledge, Pubmed and Ovid databases were searched for literature on South Asian older adults or their family carers, their understandings of mental illness and dementia and their pattern of service use. Dates were from 1984 to 2012. Abstracts were assessed for relevance, followed by detailed reading of salient papers. Three researchers rated the quality of each included study. A narrative synthesis was undertaken of extracted and charted data. Eighteen studies met the eligibility criteria for the review. South Asians and health professionals highlighted several difficulties which deterred help seeking and access to care: a lack of knowledge of dementia and mental illness, and of local services; stigma; culturally preferred coping strategies; and linguistic and cultural barriers in communication and decision making. To improve access for these groups, service users and providers need to be better informed; services need to be more culturally tailored, sometimes employing staff with similar cultural backgrounds; and health professionals can benefit from dementia education and knowledge of local services. These factors are key to the delivery of the National Dementia Strategy in England.

Understanding dementia: effective information access from the Deaf community's perspective.

This study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter. The sample was differentiated by age, role in the Deaf community, and diversity of educational attainment and professional experience. A phenomenological approach underpinned the thematic analysis of data. The findings demonstrate: (i) translation into (BSL) is a necessary but not sufficient condition to support understanding. Attention to culturally preferred means of engagement with information is vital; (ii) the content of information is best presented utilising structures and formats which cohere with Deaf people's visual cognitive strengths; and (iii) the importance of cultural values and cultural practices in raising awareness and building understanding of dementia. These include collective rather than individual responsibility for knowledge transfer and the pan-national nature of knowledge transfer among Deaf people(s). The discussion demonstrates how these specific features of effective information access and awareness building have universal implications relevant to public engagement and the promotion of general knowledge consistent with the National Dementia Strategy (England).

Single screening questions for cognitive impairment in older people: a systematic review

Single-item screening questions may be a practical first step in screening for cognitive problems in older people. A form of single-item cognitive assessment is proposed in the NHS England and Wales dementia strategy. We aimed to provide a review and synthesis of the evidence regarding the performance of single-item tests for detection of cognitive impairment. This review used Cochrane diagnostic test accuracy procedures. Two independent researchers searched for relevant papers across multiple, cross-disciplinary electronic databases using previously validated search strings. Our index test was any single screening question for cognitive impairment, including factor analysis of multi-item tools. Our reference standards included clinical diagnosis and multi-domain cognitive assessments. From 884 titles, 11 studies were identified as eligible for inclusion. Four studies were graded low risk of bias and recruited a representative patient sample. Five papers described a single screening question for cognitive impairment with each using a different question. Sensitivity ranged from 26 to 96% and specificity from 45 to 100%. Six papers described the component analysis of multiple item tools with broadly worded single questions ('decline in memory function', 'changes in ability to think and reason' or 'learning new things') performing best. Informant-based, single-item screening questions show promise for detecting cognitive impairment. However, there was substantial heterogeneity in format and application of single-item screens, and several studies were of poor methodological quality. Currently, there is insufficient evidence to support routine screening using a single-item approach.

Using telehealth to avoid hospital admissions and improve the quality of life for people with dementia in residential care homes

Introduction: Among people living in care homes, hospital admissions for avoidable conditions are 30% higher for people with dementia. An estimated 30% of older people in hospital have dementia1 and they are often admitted as a result of avoidable conditions such as dehydration, UTIs and complications as a result of long-term conditions. Once in hospital, people with dementia stay longer and have poorer outcomes than those without dementia.2 One of the reasons people with dementia are more frequently admitted to hospital is that they are often unable to communicate that they feel unwell and therefore their condition may not be identified until it reaches a more advanced stage. Implementing a system of health monitoring for people with dementia living in care homes could help to address the challenges care teams face in gathering reliable information on a regular basis from people living with dementia. Aims: The London Borough of Croydon and NHS South West London have a dementia strategy in place, which aims to improve support for people with dementia and their carers. This includes evaluating innovative strategies for delivering better care to people living in residential homes, such as introducing telehealth. Croydon Council has been piloting the development and use of Tunstall’s myclinic multi-user telehealth system. The project aimed to assess the benefits for both the care home resident and the commissioner from the continuous monitoring of the client’s health and wellbeing in their normal environment. This should to lead to more informed and better-managed care rather than unplanned and emergency interventions such as hospital admissions. Methods: Twelve residents with later stage dementia are currently using the telehealth system, care home staff having agreed with their family members that it is in their best interest to do so. Each morning a member of the care staff using the myclinic tablet will record the residents’ vital signs and complete their bespoke health questions. This information is then securely transmitted to a central triage monitoring centre. If a user’s readings are outside of the preset limits set for them in their care plan, markers are raised on the triage system and appropriate action can be quickly taken, enabling early intervention.

Understanding research in care homes - An open online training tool

Introduction: There are over 18,000 care homes in England providing homes and care for over 386,000 people with a workforce of over 200,000. Care home residents have been previously overlooked by researchers and with the national NIHR ENRICH programme looking to work with care homes and their residents in raising the accessibility to take part in studies. We are seeing evidence that this is empowering residents and carers, and its increasing interest of residents in own wellbeing and they are helping to shape future research. With the UK Governments Dementia strategy we are seeing an increase in researchers wishing to undertake studies in care home. Aim: Our aim was to enable a new potential workforce of care home staff to support and deliver NIHR portfolio studies. This required a new and innovative training tool that could be deployed flexibly within care homes. Objectives: Objectives include development of an easily accessible training platform, which when utilised will be available nationally. This tool would provide a massive workforce with a working knowledge around clinical research and the benefits to residents and organisations for taking part. The tool will be a highly cost effective platform allowing easy access via computers, smart phones or tablets. Development: A training focus group was setup comprising of care home staff and ENRICH facilitators. This group in collaboration with the NIHR Patient Engagement and Learning Manager has developed a training tool which staff will find easily accessible at home or at work via on line learning technology. With our 'Understanding Research in Care Homes' or URiCH course we have introduced techniques learned from the 'massive open online course' or MOOC movement to bring personable, flexible online learning to care home staff. We have interviewed and recorded care home managers, research delivery nurses, and care home staff and residents. They deliver the course material in a personalised first person style using video audio and documents. The course also includes assessments that help learning to take place, and on successful completion a certificate is awarded that can be printed or stored online. Our poster explores using digital technologies to address a training need using the latest online pedagogy of the MOOC. Delivered online, through computer or tablet. International Digital Health and Care Congress, The King’s Fund, London, September 10-12 2014. International Journal of Integrated Care – Volume 14, 01 November – URN:NBN:NL:UI:10-1-116475– http://www.ijic.org/ We will journey through the project from inception to creation and deployment. Discuss our findings from user pilots with care home staff (underway) and the reliability and underlying principles of flexible, responsive MOOC based technology. The phenomena that is the MOOC is changing the educational landscape worldwide. It is becoming an increasingly popular for lifelong learning and it relatively new to the healthcare arena. This online training technology has tremendous implications for healthcare training going forward and we are already addressing future projects for disseminating this training tool to other potential new members of the clinical research workforce.

32 * SINGLE SCREENING QUESTIONS FOR COGNITIVE IMPAIRMENT IN OLDER PEOPLE; A SYSTEMATIC REVIEW

Scope: Single item screening questions may be a practical first step in screening for cognitive problems in older people. A form of single item cognitive assessment is proposed in the NHS England and Wales dementia strategy. Our objective was to provide a review and synthesis of the evidence regarding the performance of single item tests for detection of cognitive impairment. Search methods: We performed a systematic review using Cochrane diagnostic test accuracy procedures. Two independent researchers searched for relevant papers across multiple, cross disciplinary electronic databases using previously validated search strings. Our index test of interest was any single screening question for cognitive impairment, including single items derived from factor analysis of multi-item tools. Our reference standards included clinical diagnosis (dementia, delirium and mild cognitive impairment) and accepted cut-offs on multi-domain cognitive assessments. We assessed risk of bias and external validity using the QUADAS-2 tool. Results: From 884 initial titles 11 studies were identified as eligible for inclusion in this review. Four studies were graded low risk of bias and recruited a representative patient sample. Clinical heterogeneity precluded formal meta-analysis. Five papers described a single screening question for cognitive impairment, each used a differing single question. Sensitivity ranged from 96% to 26%; specificity 45% to 100% depending on setting and question used. Six papers described component analysis of multiple item tools, in general broadly worded single questions around “decline in memory function”; “changes in ability to think and reason” or “learning new things” performed well. Conclusions: Informant based single item screening questions show promise for detection of cognitive impairment. However, there was substantial heterogeneity in format / application of single item screening tools and several papers had methodological or generalizability issues. Without further high quality test accuracy studies, we would not recommend large scale screening using a single item approach.

Organisational space for partnership and sustainability: lessons from the implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

FUNCTIONAL MEMORY DISORDER; REVIEW FROM A MEMORY CLINIC

The 2009 Dementia strategy promoted a ‘memory clinic in every town’. We investigated the patient mix seen in a neurology-led memory clinic. Retrospective review (2004, 2006, 2012) attendees to memory clinic. Prospective review memory clinic from October 2012–Dec 2013. Survey to neurologists in Specialist Interest Group in Cognition (ABN). Survey of local GPs. Results Percentage of attendees with benign memory complaints increased from 30% & 32% in 2004 and 2006 to 55% in 2012. Oct 2012–Dec 2013 >50% attendees do not have dementia or MCI. 9 responders: A mean of 27% of attendees of neurology-led memory clinics in the UK have ‘benign memory complaints’. The following terms were used: ▸ Attentional amnestic disorder, ▸ Attentional cognitive complaints, ▸ Worried well, ▸ Subjective memory complaints, ▸ Subjective memory impairment, ▸ Normal cognitive ageing, ▸ Hypocondrial, ▸ ‘Stress related.’ 4. GPs used; ‘worried well’, ‘benign senescent forgetfulness’, ‘Possible dementia’, ‘mild neurocognitive disorder’ and ‘late life forgetfulness’ & treated with antidepressants but also referred to psychology or memory clinic. People attending memory clinic frequently do not have dementia and currently there is no consensus for diagnostic label or treatment.

What the National Dementia Strategy forgot: providing dementia care from a psychodynamic perspective

The 2009 National Dementia Strategy exhorted the National Health Service to raise the profile of dementia in the UK and to make the diagnosis in 75% of sufferers within a few years. While this aspiration is commendable in the sense that ideologically it is an attempt to improve things for dementia sufferers, it is likely to have other consequences which may not be so well understood or considered. Raising expectations in a vulnerable population is fine if those peoples’ lives can be improved even a little by making a diagnosis. It is, however, a lot to ask services to deliver at the same time that the country is experiencing one of the worst economic crises of our generation. This paper sets out what a pathway into dementia diagnosis might look like using a psychodynamic framework, including giving a dementia diagnosis and offering aftercare. The author considers some of the thoughts and feelings in the sufferers, carers and the staff who offer the service; the challenges posed by a diverse group and how to deliver best practice. The services described are from within community psychiatric settings: those used to delivering not only dementia diagnoses, but also managing delusions, hallucinations and mood disturbances associated with dementia. Mental health services do not exclusively provide memory clinics and the author is not extending these observations to services delivered by neurologists or physicians in medicine for the elderly.

Dementia care: knowledge is power.

Dementia care: knowledge is power.

"We're all thrown in the same boat … ": A qualitative analysis of peer support in dementia care.

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Dementia strategy now needs updating to build on success

Improved diagnosis rates must be followed by clarity and co-ordination of care, say experts. Nick Triggle reports

Current activities of medical centers for dementia in Japan

We investigated the current activities of medical centers for dementia (MCD), and proposed recommendations for a national dementia strategy. A questionnaire was mailed to 172 hospitals designated as MCD as of 7 August 2012. Data from 117 MCD that adequately responded and were designated by 1 April 2012 were analyzed. The mean and median numbers of medical consultations per MCD were 1035 and 595/year (range 114-8541/year), those of patients diagnosed with dementia-related disorders were 266 and 231/year (range 3-1179/year), those of patients with dementia-related disorders admitted to the MCD hospital were 89 and 47/year (0-1176/year), and mean and median proportions of patients discharged within 2 months were 45.5 and 36.8% (range 0-100%). Outreach services in collaboration with a community general support center were provided in 23.9%, while training for community general support center staff members was carried out in 66.7%. Of MCD hospitals, 31.6% were designated as an emergency medical hospital, and of these, specialist liaison-team services for patients with dementia in the emergency room were provided in 56.8%. Most MCD are considered to function fairly well in line with the guidelines published by the Ministry of Health, Labour and Welfare. However, there is a huge discrepancy in the number of patients diagnosed with dementia-related disorders and the length of stay for inpatient care among facilities. To make all MCD function adequately, the activity of MCD should be monitored longitudinally using the standardized assessment methods.

Key issues in evolving dementia care: international theory-based policy and practice

Foreword, Professor June Andrews, Director, Dementia Services Development Centre, University of Stirling, Scotland. Introduction. Part I. Conceptualising Dementia. 1. Towards a Holistic Approach for Understanding Dementia, Anthea Innes, Senior Lecturer in Dementia Studies, School of Applied Social Science, University of Stirling, Scotland. 2. Developing Evidence for Action: Dementia Care in Canada, Scott Dudgeon, Chief Executive Officer, Alzheimer Society of Canada. 3. Epidemiology: An Overview of Current and Predicted Epidemiological Factors Shaping Dementia Care, Nicola Coley, Postdoctoral researcher, Institut National de la Sante et de la Recherche Medicale (INSERM)-Toulouse III University UMR1027, Department of Epidemiology and Public Health, Toulouse University Hospital, France Claudine Berr, INSERM research Director, INSERM-Montpellier University Research Unit UMR1061, Department of Neurology, Montpellier University Hospital, France and Sandrine Andrieu, Professor of Epidemiology and Public Health, INSERM-Toulouse III University UMR1027, Department of Epidemiology and Public Health, Toulouse University Hospital, France. 4. Integrated Care and Treatment of Dementia: Defining Best Practice for the Twenty-first Century, Laura Telford, foundation year doctor in geriatric medicine, Victoria Hospital, Kirkaldy, Scotland Emily Gallagher, foundation year doctor in geriatric medicine, Victoria Hospital, Kirkaldy, Scotland and Emma Reynish, Consultant Physician in Internal Medicine and Geriatrics, Victoria Hospital, Kirkcaldy, Scotland and Honorary Professor in Dementia Studies, University of Stirling, Scotland. Part II. Policy Development. 5. Policy to Enable People with Dementia to Live Well with Dementia: Development of the National Dementia Strategy for England, Sube Banerjee, Professor of Mental Health and Ageing, Institute of Psychiatry, King's College London, England. 6. Three Alzheimer Plans in France (2008-2012), Marie-Jo Guisset Martinez, Programmes Manager, Fondation Mederic Alzheimer, France. 7. Implementing a Regional Strategy: The Fife Dementia Strategy, Louise McCabe, Lecturer in Dementia Studies, School of Applied Social Science, University of Stirling, Scotland. 8. Challenges of Developing a Dementia Strategy: The Case of Malta, Charles Scerri, Lecturer in Neuropathology and Neuropsychopharmacology, University of Malta. Part III. Innovative Approaches to Care. 9. The Function of Memory Clinics and Post-diagnostic Services for People Newly-diagnosed with Dementia and their Families, Fiona Kelly, Lecturer in Dementia Studies, School of Applied Social Science, University of Stirling, Scotland and Paulina Szymczynska, Research Associate, Dementia Services Development Centre, University of Stirling, Scotland. 10. Bridging the Gap for Dementia Care in India, Amit Dias, Assistant Professor, Department of Preventive Medicine, Goa Medical College, India. 11. Evaluating the Impact of Environmental Design Features on Physical Activity Levels of Individuals with Dementia Living in Residential Accommodation, Loren deVries, Transitional Nurse Practitioner, The Garrawarra Centre, New South Wales, Australia and Victoria Traynor, Associate Professor, School of Nursing, Midwifery and Indigenous Health, Australia. 12. Innovative Dementia Training in the Deep South of the United States, Christopher Jay Johnson, PhD, retired Professor, Family Therapist and Researcher and Roxanna H. Johnson, Aging Consultants, Inc., USA. Conclusion. The Contributors. Subject Index. Author Index.

Black, Asian and Minority Ethnic Communities and Dementia – Where Are We Now?

Produced for the Race Equality Foundation’s Better Health briefing paper series. The Race Equality Foundation (www.raceequalityfoundation.org.uk) is a UK not-for-profit organization that seeks to influence national policy on support and services for black and minority ethnic communities by developing evidenced-based better practice to promote equality. This briefing looks at developments in the UK since the launch of the National Dementia Strategy in 2009. It uses census data to estimate the number of black and minority ethnic people living with dementia in the UK, and proposes innovative solutions for care, including the use of community dementia navigators. The briefing argues that: • Existing policy recommendations have not been taken into account when developing information and services to meet needs of black and minority ethnic communities. • The prevalence of dementia in some black and minority communities in the UK has been significantly underestimated. • Dementia is misunderstood and highly stigmatized in many UK black and minority ethnic communities. • There is an economic case for financing improvements in ‘living well’ with dementia for people in black and minority ethnic communities, • There should be a vision of a culturally appropriate approach to the dementia pathway that starts from raising awareness, leads to facilitating early diagnosis and lasts into appropriate end-of-life care.

Diagnostic rates and treatment of dementia before and after launch of a national dementia policy: an observational study using English national databases

ObjectivesTo assess the 2009 National Dementia Strategy's (NDS) impact on dementia diagnosis and treatment.Setting and participantsPrimary care data for England before and after launch of the NDS.Primary outcome measuresWe used...

Calls intensify for national dementia plan

Momentum is building for a national dementia strategy after Canada vowed with other G8 nations at a recent summit to ramp up efforts to find a cure for the disease. But history suggests implementing a truly effective strategy will be difficult. Canada is the only G8 nation without a national