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.
Abstract
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.
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This paper aims to outline the findings from a research and development project to determine how York might become a more dementia‐friendly city and, in drawing out the features…
Abstract
Purpose
This paper aims to outline the findings from a research and development project to determine how York might become a more dementia‐friendly city and, in drawing out the features, to discuss the benefits for other places.
Design/methodology/approach
The project team worked with existing groups and individuals, including people with dementia and family carers, established a cross sector operational group formed of statutory and non‐statutory sectors, and developed a wider network to share news and ideas.
Findings
York as a city is already responding in many positive ways to the needs of people with dementia and their carers, but there is much more that can be done, there and elsewhere. The project proposes a model – People, Places, Networks and Resources – for analysing the suitability and helpfulness of existing arrangements or features of a place or an organisation in order to realise a more dementia‐friendly community.
Research limitations/implications
The research was commissioned by and restricted to the City of York but there are lessons that can be taken and applied elsewhere. The project was also primarily concerned with the experience of people with dementia, generally post diagnosis, exploring their normal everyday lives as well as the contact they had and interventions from the statutory agencies. Reaching people with dementia who had not yet been diagnosed, or those on the margins of society, especially those living alone, proved hard to achieve.
Practical implications
The numbers of people with dementia are expected to double over the next 30 years, with a shrinking of the working population and a tripling of costs to the NHS and social care. The proposed model can be applied anywhere to support the creation of dementia‐friendly communities that understand how to help.
Social implications
The concept of “dementia‐friendliness” is not the exclusive domain of the health and social care world. On the contrary, the research reveals that it is the daily attrition of everyday life where help is most needed. People with dementia and family carers find routine activities most difficult – shopping, managing finances, using transport, keeping active – causing them to withdraw. There are moral, economic and business reasons why we should support people to live well with their dementia, as well as reasons of health and well‐being.
Originality/value
This project makes a substantial contribution to the literature on what constitutes a dementia‐friendly community and how to achieve it. It highlights the need for a wider information and awareness raising campaign for the general public and for anyone working directly with the public.
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The impetus for this paper was the Channel 5 documentary Who Cares for Gary? and the combined efforts of the author, her family and friends to challenge practice within one of the…
Abstract
The impetus for this paper was the Channel 5 documentary Who Cares for Gary? and the combined efforts of the author, her family and friends to challenge practice within one of the units featured. The paper describes a fundamentally disruptive sequence of decisions and events in the life of the author's brother and affirms that the consequences of abuse and mechanisms to challenge it go beyond individual suffering.
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Purpose – This chapter explores my responses to Carolyn Steedman’s Landscape for a Good Woman (1986) as a historian and an educated working-class woman and considers the ‘blind…
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Purpose – This chapter explores my responses to Carolyn Steedman’s Landscape for a Good Woman (1986) as a historian and an educated working-class woman and considers the ‘blind spots’ in some commentary on the book. The aim of this study is to unpick understandings of subjectivity, class and education in certain kinds of academic text.
Methodology/Approach – The chapter draws on a qualitative analysis of works of history and cultural studies and reflections on the author’s own emotions and experiences.
Findings – Education and class are equally important in the experiences of educated working-class people, but there are considerable difficulties in communicating these different aspects of selfhood and in ensuring they are understood.
Originality/Value – ‘Autobiographical histories’ as a form, and the use of the first person in contexts where it is not usually accepted, provide new possibilities of identification and knowledge for marginalised peoples. ‘Vulnerable writing’ therefore has a political purpose.
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Ruth M.W. Yeung and Wallace M.S. Yee
Consumer perception of a harmful and hazardous food risk and the strategies to reduce the exposure to such a risk are examined. A survey of 172 respondents confirmed the perceived…
Abstract
Consumer perception of a harmful and hazardous food risk and the strategies to reduce the exposure to such a risk are examined. A survey of 172 respondents confirmed the perceived risk theory and risk reducing strategies commonly used for the downside risk, and that expectations of negative utility are relevant to understand consumer perception of food safety risk. This study also shows that consumers are able to assess the uncertainty and the negative consequence of a perceived hazardous risk, and take action to reduce their exposure to the perceived risk. The findings seem to support the quality assurance scheme, useful information, brand, or product origin, which are the important risk reducing strategies of microbiological risk. Being a pilot study, this framework should be tested by using a product with which the risk is perceived to be beyond the control of consumers.
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Investigates urban bias in state policy making in Mexico. Refers to literature claiming that rural poverty in developing nations is a major problem because capitalism reflects an…
Abstract
Investigates urban bias in state policy making in Mexico. Refers to literature claiming that rural poverty in developing nations is a major problem because capitalism reflects an urban bias. Examines social security coverage for the rural poor in Mexico and notes that there are great variations depending on area, suggesting that social security coverage is politically negotiable. Outlines briefly the historical development of Mexico’s welfare state and uses a power resource model to demonstrate how groups with competing interests go about securing benefits from the state. Cites literature on dependency theory, indicating that rural groups have failed to mobilize politically and have therefore not secured the same state resources (such as social security benefits and housing) as urban groups, yet argues that this does not always apply in Mexico, partially due to party politics and bureaucratic paternalism. Explains how data was collected to examine regional variations in social security coverage among the rural poor and how the data was analysed. Reveal that workers in important international export markets (such as cotton and sugar) have greater political leverage in obtaining better social security benefits. Notes also that areas supporting the political party in power obtain better benefits. Concludes, therefore, that rural workers are not powerless in the face of urban capitalism and that urban bias and dependency theories do not reflect the situation in Mexico – rather social security benefits are politically negotiable.