Jill Manthorpe

Mistreatment of Older People in the United Kingdom: Findings from the First National Prevalence Study

There have been few national studies of the prevalence of elder mistreatment (abuse and neglect) in private households. This article provides an overview of the UK National Prevalence Study of Elder Mistreatment that took place in 2006. It addressed 2,111 respondents in four countries who answered a face-to-face survey questionnaire. The achieved sample was weighted to be representative of the UK older population. Of respondents, 2.6% reported mistreatment by family members, close friends, or care workers. The predominant type of reported mistreatment was neglect (1.1%) followed by financial abuse (0.6%), with 0.4% of respondents reporting psychological abuse, 0.4% physical abuse, and 0.2% sexual abuse. Women were significantly more likely to have experienced mistreatment than men, but there were gender differences according to type of abuse and perpetrator characteristics. Divergent patterns were found for neglect, financial, and interpersonal abuse. Further analysis of the data indicated that the likelihood of mistreatment varied with socioeconomic position and health status.

Primary care and dementia: 1. diagnosis, screening and disclosure†

To write a narrative review of the roles of primary care practitioners in caring for people with dementia in the community.

An International Review of the Long-Term Care Workforce: Policies and Shortages

Abstract The developed worlds population is aging, due to trends of increased life expectancies and decreased fertility rates. These trends are predicted to increase demand on long-term care services. At the same time, the long-term care workforce is in shortage in most of the developed world. Moreover, such shortages are expected to increase due to parallel socio-demographic factors. The increase in demand for long-term care, coupled with shortage in supply of care workers, has promoted some attention from policymakers. The current paper provides an international review of institutional arrangements for long-term care in different developed countries and in particular explores different strategies used or proposed to resolve the shortage in the long-term care workforce.

The hazards of early recognition of dementia: a risk assessment

A survey of dementia services in Europe suggests that the intellectual and humanitarian arguments for early recognition of dementia are overwhelming, and that health services should strive to overcome the low status of dementia as a clinical condition, the limited skills and nihilism of professionals, and the collusion of families that act as barriers to earlier diagnosis (Warner & Furnish, 2002). In England the National Service Framework for Older People now defines standards of care for the ageing population, and is unequivocal in identifying early diagnosis of dementia as beneficial (Department of Health, 2001). The opportunities this provides include access to treatment, planning for the future and facilitating people with dementia and their relatives to come to terms with dementia and its prognosis. Following this, the Audit Commission reiterated that a priority for services was to diagnose mental health problems in older people ‘as early as possible’ (Audit Commission, 2002). However, all medical interventions require an assessment of the benefits and hazards of treatment compared with inaction—a risk assessment. Risk is managed with a socio-political context (Lupton, 1993) as well as with professional and caregiving domains (Manthorpe, 2003). Essentially risk involves uncertainty of outcome and this may be positive or negative. Combined with judgements of the outcome’s importance are assessments of likelihood or probability. In all risk assessments, management and decision-making, subjective perceptions or judgements are involved, overtly or otherwise (Cabinet Office, 2002). In this paper we will review the risks of recognizing and responding to the early signs and symptoms of dementia. The early recognition of dementia is now presented as an essentially beneficial and a rational approach, in contrast to the ‘myths’ that it might not be advantageous (Milne & Wilkinson, 2002). In our view, the risk remains and entails three dimensions:

Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales

Objectives: Ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties. Method: A systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included. Results: Searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawtons model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimers Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementias QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested. Conclusion: The lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.

Assessing the Role of Increasing Choice in English Social Care Services

This article aims to explore the concept of choice in public service policy in England, illustrated through findings of the Individual Budgets (IB) evaluation. The evaluation tested the impact of IBs as a mechanism to increase choice of access to and commissioning of social care services around the individual through a randomised trial and explored the experiences and perspectives of key groups through a large set of interviews. The article presents a re-examination of these interview data, using three ‘antagonisms of choice’ proposed in the literature – choice and power relations, choice and equity, and choice and the public nature of decisions – as organising themes. The randomised trial found that IB holders perceived they had more control over their lives and appreciated the extra choice over use of services, albeit with variations by user group. However, problems of power relations, equity and the constraints implied by the public nature of decision-making were complicating and limiting factors in producing the benefits envisaged. The focus on choice in policy, especially as implemented by IBs, emphasises an individualistic approach. The findings suggest that addressing broader issues relating to power, equity and an understanding of the public nature of choice will be of value in realising more of the benefits of the policy.

‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning

This article reports investigation of prevalent understandings and systems of beliefs that underpin older people’s attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision-making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self-declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision-making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health-related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.This article reports investigation of prevalent understandings and systems of beliefs that underpin older peoples attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision-making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self-declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision-making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health-related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.

Defining elder mistreatment: reflections on the United Kingdom Study of Abuse and Neglect of Older People

ABSTRACT This paper critically reflects upon policy and research definitions of elder mistreatment in light of the findings of the United Kingdom Study of Abuse and Neglect of Older People that was commissioned by Comic Relief with co-funding from the Department of Health. The study uniquely comprised a national survey and follow-up qualitative research with survey respondents. This paper focuses on the findings of the qualitative component. One focus is the idea of ‘expectation of trust’, with an argument being made that the concept needs clarification for different types of relationships. It is particularly important to distinguish between trust in affective relationships and ‘positions of trust’ (as of paid carers), and to articulate the concept in terms that engage with older peoples experiences and that are meaningful for different relationship categories. The qualitative research also found that ascriptions of neglect and abuse tend to be over-inclusive, in some instances to avoid identifying institutional and service failures. We also question the role and relevance of the use of chronological age in the notion of ‘elder abuse’. Given that ‘abuse’, ‘neglect’ and ‘expectation of trust’ are ill-defined and contested concepts, we recommend that although consistent definitions are important, especially for research into the epidemiology and aetiology of the syndrome and for informed policy discussion, they will unavoidably be provisional and pragmatic.

Ethnic Minority Elders in the UK

This article looks at the current literature on minority ethnic elders and mental health problems in the UK. It raises fundamental problems in definition, since the literature contains great variations in definitions of ethnicity and old age. It relates issues concerning ethnicity with gender, geography and family structure. In the second part of the article, the authors review the influential theory of triple jeopardy and discuss the interplay of views about cultural factors and medical responses to health and illness in this context. Communication is used as an example of a commonly held problem but it is argued that language problems are often over-simplified and over-generalized. The authors consider broad questions of access to psychiatric services for minority ethnic elders, then focus on diagnostic difficulties with dementia and depression to illustrate particular problems. The article concludes that there is a general lack of research from the UK about ethnic elders and mental health, in particula...

The debate on ethnicity and dementia: from category fallacy to person-centred care?

The concept of ethnicity remains attractive and meaningful to service developers and professionals, although research suggests that this disguises other facets of identity and difference. An epidemiological perspective on the relationship between ethnicity and dementia supports the idea that ethnicity (defined as particular shared cultural characteristics) is not likely to influence unduly the emergence of dementia in individuals. Cultural factors may protect against dementia, impeding its recognition and influencing its course and these deserve further investigation. Ethnicity is a general concept that subsumes and conceals the impact of migration, education, health beliefs and socio-economic status on health, and therefore is problematic. Empirical research on dementia and ethnicity reveals that intra-ethnic group variation is greater than inter-ethnic group variation; supporting the view that ethnicity as a category may not have great explanatory power and may foster a category fallacy. However, the experiences of people with dementia and their carers show that the important issues for service providers to consider are language, religious belief and observance, cultural practices (including food and personal care practices) and social support and coping mechanisms. In this position paper we argue that these issues are applicable to all individuals with dementia, independent of apparent ethnicity, and that promotion of cultural competence in service provision should not be relegated to an ethnic minority agenda. The task for health and social care providers is therefore to recognise the diversity of users and to increase access to appropriate quality mainstream person-centred services, rather than to develop segregated or specialized services.