Data from the Evi-Dem study: characteristics, services, and costs of later- stage dementia care in England

doi:10.21203/rs.3.rs-2565751/v1

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Data Note

Data from the Evi-Dem study: characteristics, services, and costs of later- stage dementia care in England

https://doi.org/10.21203/rs.3.rs-2565751/v1

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Objectives:
This paper provides the data set from the Evi-Dem study, to promote data on the circumstances, services, costs, and outcomes of people in later stage dementia and their carers living at home in 17 areas of England. People with dementia’s sociodemographic data and data on their social networks, cognition, daily living activities, and quality of life were collected as were carers’ sociodemographic data and data on their quality of life, health and burden. The Evi-Dem project also provides data on the services received by people with dementia and their carers, and their costs. Inclusion criteria for participation were that they were aged 60 years and over, in later stages of dementia, had a carer, received an assessment/review of their care needs in the last three months, received support at home, and were resident within one of the sampled geographical areas.

Data description:
We provide sociodemographic data and data of cognitive, functional, and quality of life assessments of 518 people with dementia and their carers living at home across 17 areas of England. For each participant, standardized measures of these data are available as well as the volume, duration, and cost of support from services and carers and quality adjusted life years.

Dementia

Community Care

Epidemiological data

England

Data on the services routinely available, supporting people with dementia in its later stages, is important in building an evidence base about what types of services, from both health and social care, are most effective. Data on these services, alone or in combination, what is provided, how much it costs and effects on quality of life and other outcomes is only rarely available, especially for people living at home in the later stages of dementia. Many research studies, collecting such primary data from people with dementia and their carers, test interventions, away from real-world settings, and many concentrate on the early stages of dementia. There is a lack of knowledge about what might routinely offer benefit for people in later or advanced stages of dementia who are still living at home. To help address this evidence-gap, we undertook the Evi-Dem study, collating the data from research interviews with people with later-stage dementia and their carers, living at home, across 17 areas of England [1]. The data covers the circumstances, cognitive and functional status and quality of life of people with dementia and their family carers. It also contains data on the range of services and their costs received, over 6-months, by people with dementia and their carers. The Evi-Dem study was intended to make these data available to those commissioning services for this undervalued group but also, crucially, to family carers, to help them in decisions they may need to make about their relatives’ care [2]. In this paper, we describe the data to promote its use for these constituents but also so that it may be available to researchers and other users of evidence, for analysis to answer specific queries about dementia care and its costs and effects.

The data contains items collected through research interviews with 518 people with later stage dementia and their carers, living at home in 17 areas of England [3] (see Table 1). Researchers’ access to participants was through home care, respite services, Community Mental Health Teams, and local carer support services. Participants were included if aged 60 years and over, in later stages of dementia (professional rating), had a carer (living with or not), received an assessment/review of their care needs in the last three months, received support at home, and were resident within one of the 17 sampled geographical areas. All participants gave informed consent to take part in research interviews or, where capacity was an issue, consent was through a legal consultee under the Mental Capacity Act [4]. Sociodemographic data of both the person with dementia and their carer were included, in terms of gender, age, ethnicity, and marital status. Due to data privacy, the name of the (local authority) area where the participant was living was replaced with an anonymous identifier. After data collection, a variable classifying the geographical areas’ urban and rural mix was added [5]. The mean age of participants was 80 years (SD=7.6; person with dementia) and 67 years (SD=11.6; carer) and the majority were female (person with dementia: 54%, carer: 73%), white (person with dementia: 96%, carer: 96%) and married or cohabiting (65%). The data were collected between May 2016 and July 2019, by research nurses or social care researchers, at two time points 6 months apart.

The circumstances and status of the person with dementia was assessed using the Practitioner Assessment of Network Type (PANT, [6]), the Standardized Mini-Mental State Examination (SMMSE, [7]), and the Bristol Activities of Daily Living Scale (BADLS, [8]). The person with dementia’s quality of life was assessed by the Dementia Quality of Life scale (DEMQOL, [9]), self-report (rated by the person with dementia) and proxy version (carer rated). In the current data, the sum across all subscales is available as are utility measures, based upon the DEMQOL, to permit quality adjusted life years (QALYs) to be calculated for cost-effectiveness evaluation [10]. Carers’ health-related quality of life was assessed using the Euroqol (EQ) EQ-5D-5L scale [11], consisting of five questions (mobility, self-care, usual activity, pain, anxiety/depression). Utility measures, based upon the EQ-5D-5L, to permit QALYs to be calculated [12] are also provided. The General Health Questionnaire (GHQ-12, [13]), and Short Sense of Competence Questionnaire (SSCQ, [14]), also assessed health and burden.

We collected data on the resources participants used through the Client Service Receipt Inventory (CSRI, [15]) and Resource Utilization in Dementia (RUD, [16]) to identify the volume, duration, and cost of support from services and carers. After data collection, we used national unit cost data to calculate costs of formal and informal health and social care for each participant, using National Health Service (NHS) reference costs [17] and the Unit Costs of Health and Social Care [18], at a price year of 2017/18.

Table 1: Overview of data files/data sets [3]

Label	Name of data file/data set	File types (file extension)	Data repository and identifier (DOI or accession number)
Data file 1	Evi-Dem BLFU_REDUCED for DissemV2.11	.xlsx	Figshare https://doi.org/10.48420/22010672
Data file 2	Evi-Dem Data Dictionary EHSDCV3	.xlsx	Figshare https://doi.org/10.48420/22010672
Data file 3	Evi-Dem BLFU_REDUCED for DissemV2.11	.sav	Figshare https://doi.org/10.48420/22010672

The data collection procedures and data reflect the English NHS and social care settings within which participants received support services at home. Therefore, this would limit any international comparisons or inference from use of the data. The data were also collected at a point in time, with the costs data being calculated at the price year of 2017/18. Any analyses in terms of costs and cost-effectiveness may therefore have to be adjusted for inflation.

BADLS

Bristol Activities of Daily Living Scale

CSRI

Client Service Receipt Inventory

DEMQOL

Dementia Quality of Life scale

EQ-5D-5L

Euroqol (EQ) EQ-5D-5L scale

GHQ-12

General Health Questionnaire

NHS

National Health Service

PANT

Practitioner Assessment of Network Type

QALYs

quality adjusted life years

RUD

Resource Utilization in Dementia

SMMSE

Standardized Mini-Mental State Examination

SSCQ

Short Sense of Competence Questionnaire.

Ethics approval and consent to participate

The study methodology, participant information and data collection procedures were approved by the National Research Ethics Committee (NRES) on 18 December 2015 (North-West Haydock Ethics Committee; reference: 15/NW/0822). All participants gave written, informed consent or, if inability to give informed consent, this was provided by a nominated consultee in line with the UK Mental Capacity Act. All methods were conducted in accordance with the ethical standards of the declaration of Helsinki/accordance with relevant guidelines and regulations.

Consent for publication

Not applicable.

Availability of data and materials

The data described in this Data note can be freely and openly accessed on https://figshare.com/ under https://doi.org/10.48420/22010672. Please see table 1 and reference [3] for details and links to the data.

Competing interests

The authors declare that they have no competing interests.

Funding

This study was funded by the National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR203300). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Authors’ contributions

PC and SD were involved in the data collection process, study coordination and analysis and in writing of the manuscript. GS supervised statistical analyses. CT, IS and SK were involved in promotion of the data for consumption by family carers and commissioners. All authors read and approved the final manuscript.

Acknowledgements

We would like to thank all participants for agreeing to take part in the study. We would also like to thank research nurses and delivery teams in each of the local Clinical Research Networks for arranging consent and research interviews with participants.

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No competing interests reported.

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Version 1

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Data from the Evi-Dem study: characteristics, services, and costs of later- stage dementia care in England

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Abstract

Objective

Data description

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References

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Status:

Version 1