The meaning of autonomy when living with dementia: A Q-method investigation.

Background and aimsSensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice.MethodsTwenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked.ResultsThree factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active.ConclusionsThis study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care

The Health Status of Children and Young People in MidCentral and Whanganui (2015)

This report is based on an Indicator Framework1 developed in 2007 in which the indicators for each of the three reports in the series were identified. The indicators in this year’s report were developed from Craig et al’s indicators for the individual and whānau health and wellbeing stream. They are presented in the following sections: • Issues in infancy • Issues for all ages 0–24 year olds • Conditions of the respiratory system • Common communicable diseases • Unintentional injury • Reproductive health • Mental health Within each section, where possible, data are broken down by demographic factors such as age, gender, ethnicity, NZ Index of Deprivation decile, and district health board (DHB). When making comparisons between DHBs, readers should be aware that difference in disease rates may be the result of differences in DHB demographic characteristics (such as the age structure, ethnicity, and deprivation level of the population) and not assume that differences in disease rates represent differences in DHBs’ performance. In addition to providing an overview of a range of important health conditions affecting children and young people, this report also considers two issues as in-depth topics: Young people’s sexual and reproductive health by Dr Judith Adams, and Mental health issues in 15–24 year olds by Dr Michael Butchard. This report provides an overview of the health status of children and young people in New Zealand, and an entry point to the policy and evidence-based review literature, to assist with addressing child and youth health needs in a systematic and evidence-based manner. It is suggested that the Ministry of Health, DHBs and others working in the health sector use the epidemiological data in this report as a complement to knowledge of existing services and key stakeholders’ views. In addition, they should be mindful of existing Government policy, and that for any approaches developed to be effective, they need to be congruent with the evidence contained in the current literature. If there is no sound evidence base, planners should build an evaluation arm into their programmes to ensure the best use of available resources

The Health Status of Children and Young People in the Hawke’s Bay (2015)

This report is based on an Indicator Framework1 developed in 2007 in which the indicators for each of the three reports in the series were identified. The indicators in this year’s report were developed from Craig et al’s indicators for the individual and whānau health and wellbeing stream. They are presented in the following sections: • Issues in infancy • Issues for all ages 0–24 year olds • Conditions of the respiratory system • Common communicable diseases • Unintentional injury • Reproductive health • Mental health Within each section, where possible, data are broken down by demographic factors such as age, gender, ethnicity, NZ Index of Deprivation decile, and district health board (DHB). When making comparisons between DHBs, readers should be aware that difference in disease rates may be the result of differences in DHB demographic characteristics (such as the age structure, ethnicity, and deprivation level of the population) and not assume that differences in disease rates represent differences in DHBs’ performance. In addition to providing an overview of a range of important health conditions affecting children and young people, this report also considers two issues as in-depth topics: Young people’s sexual and reproductive health by Dr Judith Adams, and Mental health issues in 15–24 year olds by Dr Michael Butchard. This report provides an overview of the health status of children and young people in New Zealand, and an entry point to the policy and evidence-based review literature, to assist with addressing child and youth health needs in a systematic and evidence-based manner. It is suggested that the Ministry of Health, DHBs and others working in the health sector use the epidemiological data in this report as a complement to knowledge of existing services and key stakeholders’ views. In addition, they should be mindful of existing Government policy, and that for any approaches developed to be effective, they need to be congruent with the evidence contained in the current literature. If there is no sound evidence base, planners should build an evaluation arm into their programmes to ensure the best use of available resources

The Health Status of Children and Young People in the Midland Region (2015)

This report is based on an Indicator Framework1 developed in 2007 in which the indicators for each of the three reports in the series were identified. The indicators in this year’s report were developed from Craig et al’s indicators for the individual and whānau health and wellbeing stream. They are presented in the following sections: • Issues in infancy • Issues for all ages 0–24 year olds • Conditions of the respiratory system • Common communicable diseases • Unintentional injury • Reproductive health • Mental health Within each section, where possible, data are broken down by demographic factors such as age, gender, ethnicity, NZ Index of Deprivation decile, and district health board (DHB). When making comparisons between DHBs, readers should be aware that difference in disease rates may be the result of differences in DHB demographic characteristics (such as the age structure, ethnicity, and deprivation level of the population) and not assume that differences in disease rates represent differences in DHBs’ performance. In addition to providing an overview of a range of important health conditions affecting children and young people, this report also considers two issues as in-depth topics: Young people’s sexual and reproductive health by Dr Judith Adams, and Mental health issues in 15–24 year olds by Dr Michael Butchard. This report provides an overview of the health status of children and young people in New Zealand, and an entry point to the policy and evidence-based review literature, to assist with addressing child and youth health needs in a systematic and evidence-based manner. It is suggested that the Ministry of Health, DHBs and others working in the health sector use the epidemiological data in this report as a complement to knowledge of existing services and key stakeholders’ views. In addition, they should be mindful of existing Government policy, and that for any approaches developed to be effective, they need to be congruent with the evidence contained in the current literature. If there is no sound evidence base, planners should build an evaluation arm into their programmes to ensure the best use of available resources

A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers

Abstract Objectives The aim of this national survey was to explore the impact of COVID‐19 public health measures on access to social support services and the effects of closures of services on the mental well‐being of older people and those affected by dementia. Methods A UK‐wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020.The survey captured demographic and postcode data, social support service usage before and after COVID‐19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well‐being. Results 569 participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t‐tests and X2‐tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID‐19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well‐being in unpaid carers and older adults. Conclusions Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future. This article is protected by copyright. All rights reserved

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

Background: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. Aims: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. Methods: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. Results: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. Conclusions: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic

Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’

The Role of Identity in the Experiences of Dementia Care Workers from a Minority Ethnic Background during the COVID-19 Pandemic: A Qualitative study.

BackgroundCare home staff working during the COVID-19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID-19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID-19 pandemic.MethodsFourteen semi-structured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data.FindingsParticipants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID-19 world; difficult emotions; experiences of discrimination and racism; the response from care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others.ConclusionsThis study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention.Patient and public involvementOne care home worker was involved in developing the topic guide and helping to interpret the findings. This article is protected by copyright. All rights reserved