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Knapp, Martin

The role of formal care services in supporting young people who provide unpaid care in England

A large proportion of long-term care for people with disabilities and/or long-term health conditions is provided by unpaid carers, including young people, with potential impacts on their education, employment and health. Supporting carers is a focus of long-term care practice and policy in many countries. A key part of this support in England is through provision of services to the person with care needs (often called 'replacement' care). We aimed to explore the role of replacement care services in supporting young adult carers' health, education, and employment.

Sat, 11/28/2020 - 13:55

Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study

Background: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures.

Thu, 11/26/2020 - 16:12

Great expectations: ambitions for family carers in UK parliamentary debates on the Care Bill

The Care Act 2014 amended legislation relating to government responsibilities for adults with care needs. It set out new statutory responsibilities for the support of family or informal carers. As part of a study investigating the impact of the Care Act 2014 on family carers in England, we undertook a contextual literature review, focusing on parliamentary debates available online from Hansard. We describe the content of debates seeking to amend the law relating to carers and aspirations for the proposed reforms.

Fri, 09/06/2019 - 13:12

Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework

Background: Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. Methods: We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions.

Tue, 06/11/2019 - 10:28

Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

Purpose We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff.

Fri, 06/07/2019 - 12:49

‘Replacement care’ for working carers? a longitudinal study in England, 2013–15

In the context of rising need for long‐term care, reconciling unpaid care and carers’ employment is becoming an important social issue. In England, there is increasing policy emphasis on paid services for the person cared for, sometimes known as ‘replacement care’, to support working carers. Previous research has found an association between ‘replacement care’ and carers’ employment. However, more information is needed on potential causal connections between services and carers’ employment.

Fri, 05/03/2019 - 17:08

Barriers to receipt of social care services for working carers and the people they care for in times of austerity

Reconciliation of unpaid care and employment is an increasingly important societal, economic and policy issue, both in the UK and internationally. Previous research shows the effectiveness of formal social care services in enabling carers to remain in employment. Using quantitative and qualitative data collected from carers and the person they care for in 2013 and 2015, during a period of cuts to adult social care in England, we explore barriers experienced to receipt of social care services.

Fri, 04/12/2019 - 16:33

Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes.

Wed, 04/03/2019 - 16:26

Factors associated with the quality of life of family carers of people with dementia: A systematic review

Introduction Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes.

Mon, 03/11/2019 - 09:32

The cost of diagnosis and early support in patients with cognitive decline

Objective: Recent research indicates considerable heterogeneity in the provision of memory assessment services (MAS). However, little is known on the extent of variation in the costs of the services MAS provide. We investigated the costs of supporting patients with suspected dementia, including assessment and support over the following 6 months.; Methods: Clinic costs were estimated on the basis of an organisational survey reporting staff roll, grade and activities.

Wed, 02/06/2019 - 12:44

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