National Dementia Strategy Research Articles

Telling it as it is: involving people with dementia and family carers in policy making, service design and workforce development

Purpose The purpose of this paper is to highlight the need for proper involvement of people with dementia and carers in policy making and to suggest practical ways to achieve this. Design/methodology/approach Drawing from personal experience derived from a long career in service development in health and social care, the author outlines the importance of recognising that people with dementia and family carers are experts by experience and the merits of involving people at an early stage. Findings The best ideas come from involved people. Without the insights gained through the lived experiences of people with dementia and family carers, policy makers and professionals run the risk of developing costly services that do not meet the needs of those who will be using them. Practical implications A number of key practical pointers are developed and summarised. Engagement and one-off consultations are not enough. Real involvement has to be part of everyday practice, at all levels. It requires investment to enable people with dementia and carers to have a seat at the table, speak about what matters to them and help professionals develop relevant services that meet their needs. Originality/value The author is able to draw on particular insights gained as Programme Lead for Dementia at the Department of Health during the development of the first English National Dementia Strategy and, more recently, experience of developing engagement strategies in various localities. This included supporting people with dementia and family carers before, during and after key events at which they shared their experiences with commissioners and service providers.

Aide memoire: What should a memory clinic or a memory assessment service look like?

With the global ageing of our societies and the predicted increase of cognitive impairment and dementia, there is increasing interest in the role and scope of memory clinics or memory assessment services in the early assessment, diagnosis and management of all subtypes of dementia. Memory clinics generally attempt to provide a multidisciplinary approach to the diagnosis and treatment of memory impairment and dementia. However, little consensus exists about the profile or complement of staff that would constitute an ideal memory clinic, and services vary widely in terms of their organisation, remit and functioning. The purpose of this article is to highlight the variation amongst the existing complement of memory clinics in Ireland. The 17 models are compared in terms of their core multidisciplinary service and services available on referral. The Irish National Dementia Strategy recommends a well-coordinated service that provides early diagnosis and treatment, and one with good links to local support agencies. However, many of the services in Ireland lack input from relevant allied health professionals. This article also focusses on one privately funded memory clinic in Ireland which aims to bridge the gap between accurate diagnosis, holistic assessment and follow-up through comprehensive multidisciplinary input. The challenges facing this service are discussed, with particular reference to the difficulties encountered when providing community follow-up by a private sector clinic.

Diagnostic Care Pathways in Dementia.

Objectives: Increasing diagnostic rates of dementia is a national health priority; to meet this priority, improvement needs to be made to diagnostic services. It has been increasingly recognized that primary can play a significant role in the diagnostic journey for people with dementia, with some diagnostic services entirely located in primary care. This article reviews the extent of the involvement of primary care in diagnostic care pathways for people presenting with memory complaints within England, and presents examples of innovative approaches, which may be of interest to practitioners. Method: A rapid review was undertaken to identify articles outlining diagnostic care pathways for dementia involving primary care in England. Results: Six articles relating to pathway evaluations and innovative approaches involving primary care were deemed suitable for inclusion in the review. Conclusions: The review found examples of diagnostic pathways and innovative practices being implemented in in primary care. These practices aligned to the strategic ambitions of the National Dementia Strategy. However, it was widely acknowledged that there is a need to improve postdiagnostic pathways; in particular, access to postdiagnostic support. This issue is being reflected in contemporary policy initiatives such as the Department of Health’s 2016 Joint Declaration on postdiagnostic dementia care and support.

‘I just want to get on with my life’: a mixed-methods study of active management of quality of life in living with dementia

ABSTRACTThe active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.

National Dementia Strategy is not reducing antipsychotic use.

Antipsychotics were developed for people with schizophrenia or psychosis, but are sometimes used 'off-label' to treat behavioural symptoms in dementia.

Responding to the Active Ageing Index: Innovations in Active Ageing Policies in Malta

Malta is no exception to the unprecedented demographic changes that are being experienced by industrial countries. In the first rankings emerging from the 2012 Active Ageing Index, Malta fared in the 19th place in the overall index. In reaction, in March 2013 the newly elected Government took note of the diverse issues facing the ageing of Maltese population by positioning the responsibility for ageing policy under a ‘Parliamentary Secretariat for Rights of Persons with Disability and Active Ageing’ (previously ‘Parliamentary Secretariat for Elderly and Community Care’). The fact that the Secretariat also migrated from the ‘Ministry of Health, the Elderly, and Community Care’ to the ‘Ministry for the Family and Social Solidarity’ spoke volumes about the novel direction that ageing policy is taking in Malta—namely, a shift from the long-held focus on ‘elderly care’ to ‘active citizenship’ issues. This article presents current developments in Maltese public policy related to ageing. Given the increasing numbers and relative vulnerability of this group, there is hardly any policy ‘programme’ in greater need of thorough inspection. The Maltese government has in recent months launched, and commenced the implementation process, of the National Strategic Policy for Active Ageing, National Dementia Strategy, and the Minimum Standards for Care Homes for Older Persons. Whilst the Commissioner of Older Persons Act has also been ratified by the Maltese Parliament, the Protection of Vulnerable and Older Persons Act - which will make possible a preventive, ameliorative, remedial, and punitive role for the justice system, so that the human rights of vulnerable citizens are also catered for - has also been finalised.

Antipsychotic prescribing in care homes before and after launch of a national dementia strategy: an observational study in English institutions over a 4-year period.

ObjectivesTo assess associations between the launch of the National Dementia Strategy (NDS) and antipsychotic prescribing in long-term residential care (LTC) in England.Setting and participantsRetrospective analysis of prescribing patterns in 616 LTC institutions (31 619 residents) following launch of the NDS, using information from electronic medicines management system.Primary and secondary outcome measuresAntipsychotic prescribing point prevalence (PP) for all residents in a cross section of LTC settings over a 4-year period following NDS launch. Secondary outcomes included dosages, length of treatment and use of recommended second-generation antipsychotics (SGAs) versus first-generation antipsychotics (FGAs). Associations between facility-level PP values and institutional characteristics, resident demographics were explored. Variations across geographical areas examined. Prescription net ingredient costs calculated.ResultsNo statistically significant difference was observed in overall prescribing rates over the 4-year period (Kolmogorov-Smirnov (KS) test p=0.60), and there was no significant shift towards newer SGAs (KS test p=0.32). Dosages were above the maximum indicated in only 1.3% of cases, but duration of prescribing was excessive in 69.7% of cases. Care homes in the highest prescribing quintile were more likely to be located in a deprived area (rate ratio (Q5/Q1) RR=5.89, 95% CI 4.35 to 7.99), registered for dementia (RR=3.38, 95% CI 3.06 to 3.73) and those in the lowest quintile were more likely to be served by a single general practitioner (GP) practice (RR=0.48; 95% CI 0.37 to 0.63); p<0.001 all. A sixfold variation in PP levels was observed between geographical areas. The average annual expenditure on antipsychotics was £65.6 per person resident (2012 prices).ConclusionsThe NDS in England was not associated with reduced PP levels or the types of antipsychotic prescribing in care homes. Further research is needed to explore why. Clear standards specifying recommended agents, dosages and length of treatment, together with routine monitoring and greater accountability for antipsychotic prescribing, may be required.

086 EXPERIENCES OF PROVIDING FORMAL HOME AND COMMUNITY DEMENTIA CARE IN IRELAND: ADVOCATING FOR A HOLISTIC SYSTEMIC APPROACH

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. This study explored the professional experiences, and perceived barriers and facilitators in accessing formal home- and community-based health and social care from the perspectives of healthcare professionals and expert stakeholders in a unique position to influence dementia policy in Ireland. Methods: An exploratory qualitative design with purposive sampling was used. Three focus groups were conducted with healthcare professionals from a variety of backgrounds (n=18; years experience M=11.35, SD=7.22). One group took place in a rural setting, one in south and one in north Dublin. Seven interviews with policy and political decision makers also took place. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Narratives revealed a wide range of themes describing barriers and facilitators for the use of formal dementia care at (1) an individual level – relating to every person involved, such as needs-focused care and capacity and rights; (2) a system level – relating to the health and social care system in Ireland, such as service design, service availability and case management; and (3) overarching aspects that were important on both levels, such as education, awareness, influence and community engagement. Conflicting views emerged between healthcare professionals regarding the most appropriate time for care, and among experts regarding the definition and location of any case management support. Conclusions: These findings are interpreted in the context of the 2014 National Dementia Strategy and they 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 health professionals and policy makers alike.

055 THE FEASIBILITY OF A NATIONAL DEMENTIA REGISTER FOR IRELAND

Background: There is an acknowledged lack of information about dementia in Ireland, including very poor coding of dementia across all care settings. Yet with dementia prevalence set to increase as our population ages, there is an urgent need to gather valid epidemiological data that provides accurate and reliable national estimates of current and future dementia prevalence, and facilitates the development of robust and effective dementia health and social policy (Cahill, O’Shea, & Pierce, 2012). This study, commissioned as part of the Alzheimer Society of Ireland evidence-based policy series, examined the feasibility of developing a national dementia register for Ireland. Methods: A rapid review of national and international patient registry literature was undertaken to identify registry functions, underlying design and process models, and best-practice guidelines for their development. A ‘landscape analysis’ identified the legal, ethical, clinical, technology, and financial issues relevant to the creation of an Irish dementia register. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians and with representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged from the literature and stakeholder discussions with regard to: registry function; benefits and risks; data collection; data management; governance; legislation; barriers and facilitators; Irish complexities; and best-practice. Conclusions: The results provide an evidence-base on which to progress the issue of improved recording structures for dementia in Ireland. Given the strategic approach the government is now taking to address research and information systems as part of the 2014 National Dementia Strategy, it is opportune to examine the potential for a framework to collect information in a reliable, accurate, valid, complete, and timely way

Between practice, policy and politics: Music therapy and the Dementia Strategy, 2009.

Does current music therapy practice address the goals encapsulated in the UK Department of Health document, Living well with dementia: a national dementia strategy (the Dementia Strategy) published in 2009? A survey elicited the views of clients, family members, music therapists, care home staff and care home managers, about this question by focusing on the relationship between music therapy and the 17 objectives outlined in the Dementia Strategy. The results showed that the objectives that are related to direct activity of the music therapists (such as care and understanding of the condition) were seen as most fulfilled by music therapy, while those regarding practicalities (such as living within the community) were seen as least fulfilled. Although the responses from the four groups of participants were similar, differences for some questions suggest that people's direct experience of music therapy influences their views. This study suggests that many aspects of the Dementia Strategy are already seen as being achieved. The findings suggest that developments of both music therapy practices and government strategies on dementia care may benefit from being mutually informed.

Spotlight on Scotland: Assets and Opportunities for Aging Research in a Shifting Sociopolitical Landscape.

Scotland is a small nation, yet it leads the field in key areas of aging research. With the creation of a devolved government with authority over health and social services, the country has witnessed practice and policy developments that offer distinctive opportunities for innovative research. With multidisciplinary groups of internationally recognized researchers, Scotland is able to take advantage of a unique set of opportunities for aging research: a well-profiled population brings opportunities in population data and linkage to understand people's interactions with health, social care, and other public services; while research on technology and telecare is a distinctive area where Scotland is recognized internationally for using technology to develop effective, high-quality and well-accepted services at relatively low financial cost. The paper also considers free personal care for older people and the national dementia strategy in Scotland. The potential to evaluate the impact of free personal care will provide valuable information for other global health and social care systems. Exploring the impact of the national dementia strategy is another unique area of research that can advance understanding in relation to quality of life and the development of services. The paper concludes that, while Scotland benefits from unique opportunities for progressive public policy and innovative aging research that will provide valuable lessons at the forefront of a globally aging population, the challenges associated with an aging population and increasing cultural diversity must be acknowledged and addressed to ensure that the vision of equality and social justice for all is realized.

Being Dementia Smart (BDS): A Dementia Nurse Education Journey in Scotland.

There is a global demographic transition secondary to population ageing. The number of older people living with multimorbidities including dementia has been significantly rising both in developed and developing countries. It is estimated that there would be 74.7 million people living with dementia by 2030 that would escalate to 135.46 million by 2050. 62 % of people with dementia currently live in low and middle income countries that are very poorly resourced to cope with this epidemic. Dementia is now duly recognised as a national priority within the UK and a global priority at the 2013 G8 Summit. Management and care of an individual with dementia requires a multidisciplinary approach with expertise and a competent skill base. Nurses are central to the delivery of dementia care delivery in hospitals, community and residential care settings. It is against this background that this pre-registration integrated dementia curriculum was developed to build capacity and capability with dementia expertise among the future nursing workforce in Scotland in line with the National Dementia Strategy.

Understanding Dementia within National Dementia Policy in England: A Critical Discourse Analysis

Dementia is recognised as a public health priority globally. There are around 800,000 people with dementia in the UK and by 2040; this figure is expected to double. Since the publication of the ‘Living Well with Dementia’: A National Dementia Strategy’ in 2009 in England, a series of dementia policies have been established to improve the lives of people with dementia through increased societal awareness of dementia, earlier diagnosis and a cultural change in health and social care. This research aimed to identify dominant discourses underpinning national policy and consider their implications on the development of health and social care training.

“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...

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).

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.

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.