Anthea Innes

Dementia care in rural and remote settings: A systematic review of informal/family caregiving

OBJECTIVES The purpose of this review is to critically evaluate the available evidence from the published scientific literature on informal/family dementia care in rural and remote settings to assess the current state of knowledge, identify support implications, and make recommendations for future research. METHODS A systemic review of the literature indexed in ISI Web of Knowledge, PsychInfo, Medline, Healthstar, CINAHL, EMBASE, and Sociological Abstracts was conducted. Data were extracted from papers meeting inclusion criteria: peer-reviewed papers that focused on dementia or Alzheimers Disease (AD), and examined informal or family caregiving in relation to persons with AD or dementia in remote or rural locations. RESULTS The search identified 872 articles for review, reduced to 72 after removing duplicates and articles not meeting inclusion criteria. Of the 72 remaining, 26 are included in this review focusing on informal/family caregiving. A previous review focused on the 46 studies on formal/paid care. Four themes that correspond to the current state of knowledge about rural informal/family dementia caregiving in the 26 included studies were: service use, carer experience, support and education, and rural perceptions of dementia. CONCLUSIONS Despite the growing body of evidence over the 20 years of this review, and the widespread interest in family dementia caregiving generally, much of the research exploring family caregiving in rural areas focuses on the experience, use and barriers to formal service provision. There is limited work examining the experiences of rural caregivers and their education and support needs. More research is needed about the impact of rurality on caregiving and the education and support needs of rural informal family caregivers.

Dementia care in rural and remote settings: A systematic review of formal or paid care

OBJECTIVES The purpose of this review is to critically evaluate the available evidence from the published scientific literature on dementia care and service provision in rural and remote settings from the perspective of formal/paid caregiving, in order to assess the current state of knowledge, identify policy and practice implications, and make recommendations for future research. METHODS A systematic review of the literature indexed in ISI Web of Knowledge, PsychInfo, Medline, Healthstar, CINAHL, EMBASE, and Sociological Abstracts was conducted. Data were extracted from papers meeting inclusion criteria: peer-reviewed papers that focused on dementia or Alzheimers disease (AD), examined care or service provision in relation to persons with AD or dementia, and relevant to rural or remote care or services. RESULTS The search identified 872 articles for review, reduced to 72 after removing duplicates and articles not meeting criteria. Of the 72 remaining, 46 are included in this current review focusing on formal or paid care. A future review will focus on the 26 studies on informal/unpaid care. Six themes that correspond to the current state of knowledge in rural dementia care in the 46 included studies were: diagnostic processes, service provision, service models and programs, staff education and support needs, use of technology, and long-term care. CONCLUSIONS Despite the growing body of evidence over the 20 years covered by this review, much of the research is descriptive and/or based on small sample sizes, and distributed across the care continuum. Hence the body of evidence on which to base policy and program decisions remains limited. More research is needed that would support the development of comprehensive rural dementia care models.

The social and political context of formal dementia care provision

Dementia care is in transition, and the potential exists for a radical reform of the provision of services to people with dementia. Recent developments in Scotland based on the report of the Royal Commission on Long Term Care, With Respect to Old Age, provide an example of the possibilities and opportunities available to governments for creating services based on principles of equity and justice. It is timely therefore to consider the implications of recent government reports for the development of dementia care provision. This paper explores the social and political context of formal dementia care provision and considers the implications of recent government reports for the future. The historical discourses surrounding the term ‘dementia’, and where and who cares for people with dementia, provide insights into the options available to policy makers. A brief exploration of the economic context of dementia care provision, and of the historically low level of political interest in dementia care, provides a backdrop to recent political initiatives that seek to redress this omission.

Care home design for people with dementia: What do people with dementia and their family carers value?

Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers. Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male). Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision. Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.

Human rights, citizenship and dementia care nursing

Background.  Human rights and citizenship are concepts widely used in health and social care literature. However, they are applied less frequently and less rigorously in dementia care. This paper briefly presents these concepts before exploring how they have been applied to dementia care policy and practice. We highlight areas of dementia care where human rights can be violated and citizenship can be denied. We suggest reasons why people with dementia can be denied their human and civil rights and discuss how such concepts provide a way to address cultural and practice change in dementia care. Aims and objectives.  To demonstrate how these concepts can be used to challenge and improve dementia care nursing. Conclusions.  This paper contributes to emerging discussion about dementia care nursing by challenging conventional ways of understanding dementia and the care practices that result. Taking a rights-based approach allows nurses to examine inequity in services and address poor practice. Implications for practice.  Looking at dementia through the lenses of citizenship and human rights provides a way to broaden the scope of contemporary dementia care nursing, to enable nurses to challenge inequity and to develop and improve the direct nursing care offered to people with dementia.BACKGROUND Human rights and citizenship are concepts widely used in health and social care literature. However, they are applied less frequently and less rigorously in dementia care. This paper briefly presents these concepts before exploring how they have been applied to dementia care policy and practice. We highlight areas of dementia care where human rights can be violated and citizenship can be denied. We suggest reasons why people with dementia can be denied their human and civil rights and discuss how such concepts provide a way to address cultural and practice change in dementia care. AIMS AND OBJECTIVES To demonstrate how these concepts can be used to challenge and improve dementia care nursing. CONCLUSIONS This paper contributes to emerging discussion about dementia care nursing by challenging conventional ways of understanding dementia and the care practices that result. Taking a rights-based approach allows nurses to examine inequity in services and address poor practice. IMPLICATIONS FOR PRACTICE Looking at dementia through the lenses of citizenship and human rights provides a way to broaden the scope of contemporary dementia care nursing, to enable nurses to challenge inequity and to develop and improve the direct nursing care offered to people with dementia.

Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data

BACKGROUND This paper provides an overview of the findings from the dementia module of the 2010 Northern Ireland Life and Times (NILT) Survey: an annual survey recording public attitudes to major social policy issues. Northern Ireland, in line with many other developed countries, recently released a Dementia Strategy. The opportunity to explore the knowledge and attitudes of the general public to dementia at a national level in Northern Ireland is timely and valuable. This paper reports on an initial exploration of these attitudes, based on bivariate analysis across demographic groups. METHODS Data were analyzed using SPSS (Version 19). Descriptive and summary statistics were produced. A series of categorical bivariate relationships were tested (chi-square) and tests of association (Cramers V) were reported. We discuss both knowledge-related findings and attitudinal findings. RESULTS We found that the general public in Northern Ireland have a reasonably good level of knowledge about dementia. However, attitudinal measures indicate the stereotyping and infantilization of people with dementia. CONCLUSIONS This NILT module provides a unique source of data on attitudes to, and knowledge of, dementia. A key strength is that it provides statistically representative data with national level coverage. This information can be used to target public health education policies more effectively and to inform delivery of health and social services. The success of the module leads us to believe that it stands as a blue-print for collecting information on dementia in other social surveys.

A Review of Diagnostic Process and Postdiagnostic Support for People With Dementia in Rural Areas

Purpose: Early diagnosis of dementia allows the affected individuals to make plans, and helps services to identify and act on need. Previous work has suggested that obtaining an early diagnosis in rural areas can be difficult. This paper discusses diagnosis and postdiagnostic support for people with dementia, with a focus on service delivery in rural areas. Methods: A review of published English language literature 1999 to 2011 identified in Medline, PsycINFO, PubMed, Cochrane Library, and ScienceDirect. Results: Primary care services play a key role in accessing services in many health care systems. The role of primary care staff, and in particular general practitioners, is greatest in rural communities where specialist service access is often reduced. Despite this, rural staff often report limited training on supporting people with dementia. Postdiagnostic services can be more difficult to access in rural areas, and informal caregivers in rural areas can be more reluctant to seek such services. Transport difficulties and distance from specialist services can act as a barrier to service use. Memory services have been offered in both rural and urban areas. Conclusions: Addressing stigma, supporting staff, and signposting access are important in all areas, but seem to be particularly important in rural areas. Training and support for general staff in rural areas can be improved. Memory services provide one way of delivering services in rural areas. Service planners should take negative perceptions of dementia, barriers to access, and training of generalist service providers into account when designing dementia services in rural areas.

Caring for older people with an intellectual disability: A systematic review

This review critically evaluates the available research literature on aging among people with an intellectual disability. 42 papers meeting the review inclusion criteria are presented under three themes: studies with a service user perspective (13), studies of carers of older people with ID (14) and studies of service provision for older people with ID (15). User view specific findings relate to concerns about accommodation; experiences of services; and perceptions of aging; with a common underlying finding from all user focused themes that of unmet need. Carer specific findings relate to fear of the future; experiences of older carers; and planning for the future. Services themes reflect the debate over specialist or generalist services as people age; accommodation; retirement from day services; and staff training. Overall this review reveals a lack of robust research evidence concerning the lives of older people with ID and a need for more research that directly engages with older people with ID and their carers.

Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics

Background With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. Objective The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Methods Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. Results According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Conclusions Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

Service provision for people with dementia in rural Scotland: Difficulties and innovations

The provision of health and social care services to people with dementia and their carers living in remote and rural areas has been neglected globally. Meeting the needs of people with dementia poses many challenges for service providers. Such challenges may be compounded by the difficulties of providing and accessing services in rural areas.This article explores the views of Scottish service providers drawn from the voluntary, statutory and private sectors. Our findings highlight the difficulties relating to dementia and rurality faced by service providers in Scotland. We also consider innovative measures reported by service providers. Such measures indicate that not only can the distinct challenges of dementia service provision be overcome, but also challenges posed by providing services to people with dementia and their carers in rural and remote areas.These findings extend the literature on rural dementia service provision.The article concludes with a consideration of the practice and policy implications of providing dementia services in remote and rural Scotland.