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Development and preliminary testing of a framework for quantifying local service provision for people with dementia
- Authors:
- HUGHES Jane, et al
- Journal article citation:
- Quality in Ageing and Older Adults, 21(3), 2020, pp.193-202.
- Publisher:
- Emerald
Purpose: It was hypothesised that there were variations in health and social care services available for older people with dementia and their carers, and that measurement of this between localities was possible. The purpose of this paper is to present a framework for examining this. Design/methodology/approach: Using a case study approach, data from national surveys of local authorities providing social care and National Health Services Trusts providing old age mental health services conducted in 2014/2015 in England were used. From these, indicators of variation in services for people with dementia and their carers in different geographical areas were created. Measurement of the presence/absence of each service permitted the creation of a service mix score for each area. Findings: The framework comprised 16 attributes each with indicators describing the characteristics of the organisations providing the services; the skill mix of community mental health teams for older people; and the health care and social care services available in localities. Variation was evident, confirmed by quartile analysis and exemplars, suggesting that older people with dementia and their carers in different localities are likely to experience differences in the range of provision available, particularly social care services. Originality/value: The case study approach used achieved its objectives, and the resultant framework has potential for generalisability and utility, given acceptable ecological validity and discriminant validity in identifying variations in service mix. It could be used in both research and practice. (Edited publisher abstract)
A different ending: addressing inequalities in end of life care: people with dementia
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2016
- Pagination:
- 4
- Place of publication:
- Newcastle upon Tyne
This document outlines the experience of people with dementia of barriers to good end of life care. The report is one of a suite of documents reporting on the Care Quality Commission end of life care thematic review, and is designed to be read in conjunction with the other documents. The review supports existing evidence that there are a number of barriers that prevent people with dementia receiving good end of life care, including lack of identification and planning, unequal access to care, and poor quality of care. The Care Quality Commission encourages health professionals, including GPs, to facilitate early conversations with people with dementia and those who are important to them about their wishes and choices for end of life care, and help them to contribute to an advance care plan wherever possible; commissioners and providers to make sure that staff have the training and support they need to care for people with dementia who are approaching the end of life, and to understand and implement the requirements of the Mental Capacity Act 2005; and hospices to consider to what extent they are meeting the end of life care needs of people with dementia, and take action where required in line with our definition of good end of life care in hospice services. (Edited publisher abstract)
Forget me not: dementia in prison
- Authors:
- MASCHI Tina, et al
- Journal article citation:
- Gerontologist, 52(4), August 2012, pp.441-451.
- Publisher:
- Oxford University Press
The authors suggest that despite the number of older adults with dementia in American prisons rising rapidly, the vast majority of this marginalised subgroup of the aging population has inadequate access to medical and mental health care. The main aims of this discussion paper are to raise awareness of the life and experiences of persons with dementia in prison and to stimulate discussion, research and advocacy on their behalf. The authors assert that proactive, interdisciplinary collaborative efforts to improve practice, policy, and research and to develop a high-quality evidence-based continuum of care for this aging population are urgently needed. They begin with an overview of the growing number of older adults with dementia in U.S. prisons, the high-risk factors for dementia in the prison population, and the life and experience of persons with dementia in the culture and environment of prisons that are primarily not designed for them. The paper goes on to review the current state of services and programmes for dementia in prison. The authors conclude by proposing practice, policy, and research-related priority areas and strategies for interdisciplinary gerontological responses.
Out of sight out of mind
- Authors:
- SHERRATT Chris, YOUNGER-ROSS Sue
- Journal article citation:
- Community Care, 29.4.04, 2004, pp.40-41.
- Publisher:
- Reed Business Information
Intermediate care helps many people stay in their own home and frees up hospital beds, yet many people with dementia are often excluded from these services. Looks at how to provide intermediate care services for older people with dementia, and what can go wrong.
A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers
- Authors:
- GIEBEL Clarissa, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 36(3), 2021, pp.393-402.
- Publisher:
- Wiley
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: Five hundred and sixty‐nine 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. (Edited publisher abstract)
COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey
- Authors:
- GIEBEL Clarissa, et al
- Journal article citation:
- BMJ Open, 11(1), 2021, p.e045889. Online only
- Publisher:
- BMJ Publishing Group
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. (Edited publisher abstract)
‘Mrs Smith has no rehab potential’: does rehabilitation have a role in the management of people with dementia?
- Authors:
- GOODWIN Victoria, ALLAN Louise M.
- Journal article citation:
- Age and Ageing, 48(1), 2019, pp.5-7.
- Publisher:
- Oxford University Press
This article considers the concept of 'no rehabilitation potential' in relation to older people with dementia. It highlights how people with dementia are often deemed to have no rehabilitation potential and denied access to such services; that there a sense of abandonment is common among carer and and that changing attitudes will require staff training and adequate resources to meet the needs of this growing population. (Original abstract)
Becoming a dementia-friendly arts venue: a practical guide
- Authors:
- ALLEN Penny, et al
- Publisher:
- Alzheimer's Society
- Publication year:
- 2015
- Pagination:
- 40
- Place of publication:
- London
A guide for arts venue managers and staff on how to make the environment, facilities and programming of arts venues accessible to people with dementia, their families and carers. The guide covers: community engagement and where to find information and support to engage with people living with dementia and their carers; accessibility and how to publicise a venue to people with dementia and making it a welcoming and safe space; how to programme events and activities that take people with dementia needs into account. This guide contains examples of successful initiatives around the country and a list of resources that provide more in-depth information about becoming dementia friendly. (Edited publisher abstract)
Living and dying with dementia in England: barriers to care
- Authors:
- MARIE CURIE CANCER CARE, ALZHEIMER'S SOCIETY
- Publishers:
- Marie Curie Cancer Care, Alzheimer's Society
- Publication year:
- 2014
- Pagination:
- 24
- Place of publication:
- London
This report assesses access to appropriate high quality care in the final stage of dementia – a progressive, terminal illness. It highlights that dementia is often not recognised as a terminal diagnosis, and this can lead to poor access to care, inconsistent quality of care and inadequate pain management. The report draws on research from across the UK and particularly from University College London, as well as findings from health and social care services. The paper examines the three main barriers that prevent many people from accessing appropriate high-quality care at the end of their lives. These are: poor identification and planning, including poor recognition of dementia as a terminal illness and a cause of death and lack of appropriate/timely diagnosis and care planning; inequality of access to palliative care, hospice care and funding and discrimination; and inconsistency in care standards and inappropriate hospital admissions. The report aims to bring together NHS organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to explore how to address the barriers and develop an action plan that each organisation can to sign up to. (Edited publisher abstract)
Complexity in cognitive assessment of elderly British minority ethnic groups: cultural perspective
- Authors:
- KHAN Farooq, TADROS George
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 13(4), 2014, pp.467-482.
- Publisher:
- Sage
Aim: To study the influence of cultural beliefs on the acceptance and accessibility of dementia services by patients from British Minority Ethnic (BME) groups. Results: It is noted that non-White ethnic populations rely more on cultural and religious concepts as coping mechanisms to overcome carer stress. In British Punjabi families, ageing was seen as an accepted reason for withdrawal and isolation, and cognitive impairment was rarely identified. Illiteracy added another complexity, only 35% of older Asians in a UK city could speak English, 21% could read and write English, while 73% could read and write in their first language. False positive results using Mini Mental State Examination was found to be 6% of non-impaired white people and 42% of non-impaired black people. Cognitive assessment tests under-estimate the abilities in BME groups. Wide range of variations among white and non-White population were found, contributors are education, language, literacy and culture-specific references. (Publisher abstract)