Review of Legislation and Policy Guidance relating to Adult Social Care in Northern Ireland

Introduction and Background

This research was undertaken by an international team of academics from Queen’s University, Belfast, Leeds University and Penn State University (USA) who have examined models of adult social care provision across thirteen jurisdictions. The aim of this research is to present the Commissioner for Older People in Northern Ireland (COPNI) with possible options for legal reform to adult social care provision for older people in Northern Ireland.

Project Objectives

The agreed objectives of this research were to provide:
• Identification of gaps and issues surrounding the current legislative framework including policy provision for adult social care in Northern Ireland.
• Comparison of Northern Ireland with best practice in other jurisdictions to include (but not be limited to): England and Wales, Republic of Ireland, Scotland and at least two other international examples; Recommendations, based on the above, as to whether there is a need for legislative reform – provision of suggestions other than legislative change (if applicable).
• Recommendations or options based on the above, on how to best change the current framework in Northern Ireland to provide better support outcomes for older people.
• Stakeholder engagement via roundtable event to discuss outcomes/ recommendations.

Structure of Report

The findings from this research are based on an international review of adult social care in the local, national and international contexts. The report will, therefore, firstly present the key recommendations for Northern Ireland which have emerged from a systematic examination and review of adult social care in diverse jurisdictions. Each jurisdiction is then examined in the context of legislative and policy provision and examples of best practice are provided. The final section of the report then compares Northern Ireland to best practice from each of these aforementioned jurisdictions and the discussion entails the background to the report’s final Recommendations. The recommendations in this report are thus directly linked in with the evidence we have gathered across different countries with contrasting systems of welfare.

Bereavement After Informal Caregiving: Assessing Mental Health Burden Using Linked Population Data

Methods. We linked prescription records for antidepressant and anxiolytic drugs to characteristics and life-event data of members of the Northern Ireland Longitudinal Study (n = 317 264). Using a case-control design, we fitted logistic regression models, stratified by age, to model relative likelihood of mental health problems, using the proxy measures of mental health–related prescription.

Results. Both caregivers and bereaved individuals were estimated to be at between 20% and 50% greater risk for mental health problems than noncaregivers in similar circumstances (for bereaved working-age caregivers, odds ratio = 1.41; 95% confidence interval = 1.27, 1.56). For older people, there was no evidence of additional risk to bereaved caregivers, though there was for working-age people. Older people appeared to recover more quickly from caregiver bereavement.

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Does ageism still exist in nurse education?

Worldwide demographic changes mean that older people represent a significant group of patients for nurses everywhere. Ageism is increasingly recognised as an issue among healthcare professionals and evidence suggests that problems with quality of care remain. Nursing curricula have to address the needs of an ageing population in a variety of settings, reflect the importance of therapeutic care and explore nursing students’ attitudes, in order to provide them with the appropriate skills to meet the needs of older people. This article debates the main factors influencing gerontological content in nursing curricula and suggests that ageism is still evident in nurse education. A variety of strategies are identified to assist in developing appropriate curriculum content.

“It’s very complicated”: a qualitative study of medicines management in intermediate care facilities in Northern Ireland

Background: Intermediate care (IC) describes a range of services targeted at older people, aimed at preventing unnecessary hospitalisation, promoting faster recovery from illness and maximising independence. Older people are at increased risk of medication-related adverse events, but little is known about the provision of medicines management services in IC facilities. This study aimed to describe the current provision of medicines management services in IC facilities in Northern Ireland (NI) and to explore healthcare workers' (HCWs) and patients' views of, and attitudes towards these services and the IC concept. 

Methods: Semi-structured interviews were conducted, recorded, transcribed verbatim and analysed using a constant comparative approach with HCWs and patients from IC facilities in NI. 

Results: Interviews were conducted with 25 HCWs and 18 patients from 12 IC facilities in NI. Three themes were identified: 'concept and reality', 'setting and supply' and 'responsibility and review'. A mismatch between the concept of IC and the reality was evident. The IC facility setting dictated prescribing responsibilities and the supply of medicines, presenting challenges for HCWs. A lack of a standardised approach to responsibility for the provision of medicines management services including clinical review was identified. Whilst pharmacists were not considered part of the multidisciplinary team, most HCWs recognised a need for their input. Medicines management was not a concern for the majority of IC patients. 

Conclusions: Medicines management services are not integral to IC and medicine-related challenges are frequently encountered. Integration of pharmacists into the multidisciplinary team could potentially improve medicines management in IC.

A qualitative study of community pharmacists’ awareness of and involvement with intermediate care facilities

Rationale, aims and objectives: Intermediate care (IC) describes a range of services targeted at older people, aimed at preventing unnecessary hospitalisation, promoting faster recovery and maximising independence. The introduction of IC has created a new interface between primary and secondary care. Older people are known to be at an increased risk of medication-related problems when transferring between healthcare settings and pharmacists are often not included as part of IC multidisciplinary teams. This study aimed to explore community pharmacists’ (CPs) awareness of IC services and to investigate their views of and attitudes towards the medicines management aspects of such services, including the transfer of medication information.

Method: Semi-structured interviews were conducted, recorded, transcribed verbatim and analysed using a constant comparative approach with CPs practising in the vicinity of IC facilities in Northern Ireland, UK.

Results: Interviews were conducted with 16 CPs. Three themes were identified and named ‘left out of the loop’, ‘chasing things up’ and ‘closing the loop’. CPs felt that they were often ‘left out of the loop’ with regards to both their involvement with local IC services and communication across the healthcare interfaces. As a result, CPs resorted to ‘chasing things up’ as they had to proactively try to obtain information relating to patients’ medications. CPs viewed themselves as ideally placed to facilitate medicines management across the healthcare interfaces (i.e., ‘closing the loop’), but several barriers to potential services were identified.

Conclusion: CPs have limited involvement with IC services. There is a need for improvement of effective communication of patients’ medication information between secondary care, IC and community pharmacy. Increasing CP involvement may contribute to improving continuity of care across such healthcare interfaces, thereby increasing the person-centeredness of service provision.

Unmasking the ‘Elderly Mystique’: why it is time to make the personal political in ageing research

This article uses feminist scholarship to investigate ‘the elderly mystique’ – which contends that the potential of old age is masked by a set of false beliefs about ageing (i.e. ageism) which permeate social, economic and political life (Cohen, 1988).
The article presents a theoretical model which explores the extent to which institutionalised ageism shapes the trajectory of life after 60. The hypothesis under-pinning the model is simple: The challenge for ageing societies is not the average age of a given population but, rather, how age is used to structure economic, social and political life. An inter-disciplinary framework is used to examine how biological facts about ageing are used to segregate older from younger people, giving older people the status of “other”; economically through retirement, politically through assumptions about ‘the grey vote’ and socially through ageist stereotyping in the media and through denial and ridicule of the sexuality of older people. Each domain is informed by the achievements of feminist theory and research on sexism and how its successes and failures can inform critical investigations of ageism.
The paper recognises the role of ageism in de-politicising the lived experience of ageing. The paper concludes that feminist scholarship, particularly work by feminists in their seventies, eighties and nineties has much to offer in terms of re-framing gerontology as an emancipatory project for current and future cohorts of older people.

The politics of age in Northern Ireland

This paper examines the attempt to strengthen the political, social and policy status of aging in Northern Ireland in the context of the regions emergence from decades of ethno-religious conflict. Supported by the US based Atlantic Philanthropies, the paper shows how the NGO sector restructured, became more tactical about its use of evidence and experimented with social enterprise models to strengthen the rights of the most excluded old in the region. This change process is inevitably incomplete and not everything worked but it did create a new political landscape that placed older people at the heart of protest and advocacy about the issues that affect their daily lives.

Ageing, Justice, and Resource Allocation

Around the world the population is ageing in ways that pose new challenges for health care providers. To date these have mostly been formulated in terms of challenges created by increasing costs, and the focus has been squarely on life prolonging treatments. However, this focus ignores the ways in which many older people require life enhancing treatments to counteract the effects of physical and mental decline. This paper argues that in doing so it misses important aspects of what justice requires when it comes to older people.

Implications of divergences in Adult Protection legislation

Purpose – The purpose of this paper is to explore the similarities and differences of legal responses to older adults who may be at risk of harm or abuse in the UK, Ireland, Australia and the USA.
Design/methodology/approach – The authors draw upon a review of elder abuse and adult protection undertaken on behalf of the commissioner for older people in Northern Ireland. This paper focusses on the desk top mapping of the different legal approaches and draws upon wider literature to frame the discussion of the relative strengths and weaknesses of the different legal responses.
Findings – Arguments exist both for and against each legal approach. Differences in defining the scope and powers of adult protection legislation in the UK and internationally are highlighted.
Research limitations/implications – This review was undertaken in late 2013; while the authors have updated the mapping to take account of subsequent changes, some statutory guidance is not yet available. While the expertise of a group of experienced professionals in the field of adult safeguarding was utilized,
it was not feasible to employ a formal survey or consensus model.
Practical implications – Some countries have already introduced APL and others are considering doing so. The potential advantages and challenges of introducing APL are highlighted.
Social implications – The introduction of legislation may give professionals increased powers to prevent and reduce abuse of adults, but this would also change the dynamic of relationships within families and between families and professionals.
Originality/value – This paper provides an accessible discussion of APL across the UK and internationally
which to date has been lacking from the literature.

Hospitalização em pessoas idosas : impacto na qualidade de vida

As pessoas idosas são hospitalizadas com mais frequência e por períodos superiores por comparação com pessoas mais novas. A literatura indica que a interação entre idade, patologia e cuidados durante o internamento influencia a perceção de Qualidade de Vida (QV) pela pessoa idosa. Esta investigação analisa a influência da hospitalização na QV e espiritualidade das pessoas idosas e pretende contribuir para melhor compreender a hospitalização na velhice, ajudando a desenvolver medidas que promovam a qualidade dos cuidados a pessoas idosas durante a hospitalização. A amostra compreende 250 participantes (≥65 anos). Administrou-se o EASYcare (Sistema de Avaliação de Pessoas Idosas) e a Escala da Espiritualidade em 3 momentos: admissão, alta e follow-up (6 a 12 meses após a alta). Os principais resultados indicam: i) na admissão, as pessoas idosas mais dependentes tendem a ser viúvas, não praticar exercício físico, sentir-se sozinhas e deprimidas; os independentes tendem a estar mais satisfeitos com a sua habitação e a gerir de forma autónoma as suas finanças, apresentando maior escolaridade e sendo mais novos; ii) na alta, as pessoas idosas diminuem a perceção da qualidade de vida, principalmente com aumento da dependência, diminuição da saúde mental e bem-estar, diminuição da mobilidade e capacidade de cuidar de si; iii) no follow-up, os participantes tendem a ser mais dependentes comparativamente com a admissão; o risco de queda é menor comparativamente com os outros momentos. O modelo preditivo de óbitos indica como principais resultados: falecimento entre admissão e alta tem como fatores protetores rendimentos suficientes e ausência de apoio social; falecimento entre alta e follow-up tem como fatores de risco idade e risco de queda elevado; falecimento entre admissão e follow-up tem como fator protetor antecedentes clínicos do foro cardíaco. As conclusões gerais sustentam a importância do aprofundamento da pesquisa sobre a influência da hospitalização na pessoa idosa na sua qualidade de vida, e a adoção de medidas e estratégias para a promoção da QV durante e após o internamento hospitalar. Estes resultados têm implicações na prática e na elaboração de políticas institucionais, pois permite compreender o impacto da hospitalização nas pessoas idosas, permitindo desenvolver medidas para melhorar os cuidados antes, durante e após o internamento hospitalar. Este estudo permite conhecer as necessidades das pessoas idosas durante o internamento e delinear estratégias para o follow-up, sendo adaptado às especificidades da população idosa Portuguesa.

Famílias envelhecidas: percursos e diversidade

O conhecimento sobre famílias envelhecidas é ainda escasso. Neste âmbito, a pesquisa tem incidido nos cuidados familiares a idosos dependentes, focando os problemas de saúde, dependência funcional e declínio cognitivo. Esta investigação pretende contribuir para aprofundar o conhecimento sobre as famílias envelhecidas, assumindo uma perspetiva normativa e desenvolvimental, e contemplando a diversidade de contextos de vida e envelhecimento. O capítulo 1 centra casais compostos por pessoas idosas, e tem por objetivos: caracterizar a estrutura, dinâmica e valores do agregado familiar dos casais idosos; evidenciar valores e dinâmica relacional dos casais idosos. A amostra compreende 136 participantes, a quem foi administrado um questionário sobre a fase última do ciclo de vida familiar (Cerveny,1997). A análise de dados efetuou-se com recurso ao programa de análise de dados estatística SPSS 17.1. Os resultados indicam que os casais vivem predominantemente em casal, com uma dinâmica relacional do agregado caracterizada pelo respeito, diálogo e carinho; dinâmica relacional do casal caracterizada por clima afetuoso, amizade e diálogo, e valores assentes no amor, diálogo e convívio familiar. A dinâmica relacional do casal é pautada por atividades de lazer realizadas em conjunto e vida sexual tão boa como antes; os valores dão ao casamento significados de realização pessoal e perpetuação através dos filhos na juventude, e adaptação e descoberta na velhice. O capítulo 2 foca a construção da integridade familiar considerando a diversidade de contextos socioeconómicos (pessoas idosas que viveram em contexto de pobreza ao longo da vida), socioculturais (ex-emigrantes portugueses) e novas formas de famílias (homens homossexuais). Foi aplicada uma entrevista semiestruturada (King & Wynne, 2004) a uma amostra de 12, 20 e 10 pessoas, respetivamente. A análise de dados foi efetuada com base na análise de conteúdo com recurso a juízes independentes baseada na grounded theory, contudo no caso do contexto socioeconómico recorreu-se ao programa de análise de dados qualitativa N-Vivo 7. Os resultados sugerem que a diversidade de contextos analisada coloca desafios à rutura familiar o que pode potenciar o caminho da desconexão e alienação. Contudo, o contexto das significações exerce um papel fundamental na construção da integridade familiar. A redefinição da identidade associada a uma filosofia de vida que enfatize as forças em vez dos fracassos parece determinar a construção da integridade familiar, contudo existem especificidades. Relativamente ao contexto socioeconómico: as pessoas idosas no caminho da integridade revelam um sentido de autovalorização (ter vivido uma vida significativa) apesar da pobreza; as pessoas idosas no caminho da desconexão/alienação alimentam sentimentos de insignificância devido à escassez de recursos económicos. Ainda neste contexto, os valores (princípios de conduta) reinterpretam a identidade ao longo da vida e permitem compreender que a integridade familiar ocorre quando ser pobre é encarado pelas conquistas; a desconexão/alienação emerge quando ser pobre incorpora sentimentos de desvalorização e inferioridade. No contexto sociocultural, as pessoas idosas ex-emigrantes cujo processo de emigração se desenvolveu em família (a família está envolvida no processo de emigração e funciona como um pilar desde a fase de decisão até ao regresso) desenvolveram uma filosofia de vida assente numa atitude ativa e solidária e estão em integridade familiar; as pessoas em desconexão relatam episódios de conflito familiar que marcam a trajetória de emigração, e uma atitude passiva na resolução desses conflitos até à atualidade; as pessoas em alienação familiar, cujo processo de emigração se desenrolou de forma solitária, desenvolvem uma filosofia de vida assente na luta solitária: a sua força e identidade estão em enfrentar tudo sem precisar de ninguém. Relativamente às novas formas de família, a integridade familiar evolui desde a revelação da homossexualidade (em idade jovem) e conclui-se na velhice quando a homossexualidade se torna um legado. A desconexão parece evoluir da luta constante da falha da aceitação da homossexualidade pela família e outras pessoas significativas. O capítulo 3 analisa as trajetórias de vida de homens homossexuais atualmente idosos, para compreender melhor a influência da homossexualidade e os principais eventos. Adotou-se a técnica da linha de acontecimentos de vida (Acquaviva et al., 2007), aplicada a 10 participantes com 60 anos ou mais. Os resultados sugerem que vários eventos de vida influenciam o curso de vida: i) o autoconhecimento da homossexualidade; ii) tentar passar por heterossexual; iii) assumir a homossexualidade (explicita ou implicitamente); iv) sentir limitações e desafios relacionados com o ser idoso e homossexual. O capítulo 4 procurou alargar a perspetiva do envelhecimento considerando uma abordagem transcultural. Assim, realizou-se um estudo numa comunidade indígena (Guarani Mbya, Brasil). Neste estudo analisase o modo de viver e ser idoso nessa comunidade. A amostra compreende 6 participantes a quem foi administrada uma entrevista aberta. Este estudo contemplou ainda a observação com registo etnográfico e realização de um diário de bordo. A análise de conteúdo efetuou-se com apoio do software de dados qualitativa WebQDA 1.4.3. Os resultados sugerem o papel das pessoas idosas na preservação de uma cultura ágrafa, garantindo que as tradições estejam presentes nas gerações atuais através da oralidade. A adoção de lentes normativas no estudo e compreensão das famílias envelhecidas permite compreender as tarefas desenvolvimentais e normativas no fim da vida.

Development and Progress as Historical Phenomena in Tanzania: “Maendeleo? We Had That in the Past”

Academic discussions of development continue to grow, yet critical engagements with communities affected by development interventions remain limited. Drawing from life history interviews conducted in southern Tanzania, this article details the varied experiences of development interventions among older people and how these affect broader understandings of progress. Many juxtapose their negative views of ujamaa villagization with more positive recollections of previous interventions (especially the Groundnut Scheme), which are infused with what is described here as “development nostalgia.” Perceptions of the past clearly inform the social, political, and economic aspirations forwarded today, with the richness of the constructed narratives adding further nuance to existing depictions of Tanzanian historiography.

Processos de cuidar em enfermagem:idosos com hipertenção arterial

Tese de doutoramento, Enfermagem, Universidade de Lisboa, com a participação da Escola Superior de Enfermagem, 2014