Specialist services in early diagnosis and support for older people with dementia in England: Staff roles and service mix

Ahmed, Saima; Hughes, Jane; Davies, Sue; Stewart, Karen; Orrell, Martin; Clarkson, Paul

doi:10.1002/gps.4925

Cited by 3 publications

(7 citation statements)

References 14 publications

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“…These are similar to the supplemental and complementary relationship models between statutory and non-statutory organisations described by Young (2000). In the present study complementary services were predominantly designed for people with dementia, providing advice and support to people after NHS led memory clinics had undertaken diagnostic work where statutory support is not always present (Ahmed et al 2018). Substitute services were present in hospital discharge services and three of the four SWPwA pilots in the study.…”

Section: Substitutes and Complementssupporting

confidence: 72%

“…The immediate need is for a care plan and to establish home support services, which may often be time consuming (Challis et al 2014). By contrast, in a memory service, often offering support and advice not long after a formal dementia diagnosis at a memory clinic (Ahmed et al 2018;Department of Health, 2009), the focus is likely to be on identifying current needs and reviewing how arrangements are working as the person and family adjust to new circumstances and expectations. These differences in requirements shaped by setting are likely to also be reflected in funder requirements specified in the commissioning and contracting processes.…”

Section: Service Settingmentioning

confidence: 99%

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Care Coordination for Older People in the Non-Statutory Sector: Activities, Time Use and Costs

Hughes¹,

Jasper²,

Worden³

et al. 2020

Journal of Long Term Care

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Context: Care coordination is one important mechanism to provide effective care at home for frail older people in a world with ageing populations. In England this has usually been undertaken by state funded local authority social care services. The Care Act 2014 promoted greater involvement of the non-statutory sector in the provision of care and support, including care coordination, for older people at home to offer greater flexibility and consumer choice. Objective(s): To explore how organisations in the non-statutory sector in England undertake care coordination activities, targeting, their staff time use and costs to support older people at home. Method(s): A case study approach was used involving semi-structured interviews with practitioners in 17 services selected from a national survey in 2015. Estimates of practitioner time use for a typical case, and associated costs for each service were calculated. Data were analysed to identify the range of care coordination activities undertaken, forms of targeting, patterns of staff time use and service costs. Findings: Two services undertook no targeting activities; of eight care coordination activities only two were undertaken in all services. Costs of care coordination activities varied both within and between services in two distinct settings: hospital discharge and memory services. More time was spent by practitioners in direct contact with service users and carers than on indirect activities in most care coordination services. Limitations: A case study approach is more difficult to generalise; recall bias may have influenced data on time use and costs from practitioner interviews; some costs had to be attributed using national data. Implications: Both service setting and gatekeeping mechanisms shaped care coordination activities. Where services were designed to substitute for statutory services their sustainability needs to be addressed in terms of length of contracts, extent of case responsibility and full costing.

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Section: Substitutes and Complementssupporting

confidence: 72%

Section: Service Settingmentioning

confidence: 99%

Care Coordination for Older People in the Non-Statutory Sector: Activities, Time Use and Costs

Hughes¹,

Jasper²,

Worden³

et al. 2020

Journal of Long Term Care

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“…Second, to explore the commissioning of social care services for people with dementia living at home. The studies were published in the International Journal of Geriatric Psychiatry (the NHS survey in 2018 135 and the local authority survey in 2019 136 ). The outputs from these papers are in Appendix 3.…”

Section: Survey Of Current Provision In Englandmentioning

confidence: 99%

“…The NHS survey 135 investigated how staff in CMHTs and memory clinics support people with dementia in their own homes. We collected data in 2015 through a cross-sectional survey of the 68 NHS trusts that provide mental health services in England.…”

Section: Survey Of Current Provision In Englandmentioning

confidence: 99%

“…Development was facilitated by the use of the SITE concept that is used elsewhere in the programme. 30,135 We derived the toolkit presentation from the work of Goertz 192 who proposed a three-level structure, with a basic, secondary and indicator level. The basic level is the central theoretical aspect of a concept, for example democracy.…”

Section: Appendix 3 Survey Of Current Provision In Englandmentioning

confidence: 99%

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Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Clarkson

Challis

Hughes

et al. 2021

Programme Grants Appl Res

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Background Over half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well. Objectives We aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia. Design We undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study. Setting The national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations. Participants People aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent. Main outcome measures The trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence. Methods Owing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. The main source of economic studies was the NHS Economic Evaluation Database. We analysed the trial and observational study by linear mixed models. We analysed the trial by ‘treatment allocated’ and used propensity scores to minimise confounding in the observational study. Results Our reviews and surveys identified several home support approaches of potential benefit. In early-stage dementia, the DESCANT trial had 468 randomised participants (234 intervention participants and 234 control participants), with 347 participants analysed. We found no significant effect at the primary end point of 6 months of the DESCANT intervention on any of several participant outcome measures. The primary outcome was the Bristol Activities of Daily Living Scale, for which scores range from 0 to 60, with higher scores showing greater dependence. After adjustment for differences at baseline, the mean difference was 0.38, slightly but not significantly favouring the comparator group receiving treatment as usual. The 95% confidence interval ran from –0.89 to 1.65 (p = 0.56). There was no evidence that more intensive care packages in later-stage dementia were more effective than basic care. However, formal home care appeared to help keep people at home. Staff recommended informal care that cost 88% of formal care, but for informal carers this ratio was only 62%. People with dementia preferred social and recreational activities, and carers preferred respite care and regular home care. The DESCANT intervention is probably not cost-effective in early-stage dementia, and intensive care packages are probably not cost-effective in later-stage dementia. From the perspective of the third sector, intermediate intensity packages were cheaper but less effective. Certain elements may be driving these results, notably reduced use of carers’ groups. Limitations Our chosen outcome measures may not reflect subtle outcomes valued by people with dementia. Conclusions Several approaches preferred by people with dementia and their carers have potential. However, memory aids aiming to affect daily living activities in early-stage dementia or intensive packages compared with basic care in later-stage dementia were not clinically effective or cost-effective. Future work Further work needs to identify what people with dementia and their carers prefer and develop more sensitive outcome measures. Study registration Current Controlled Trials ISRCTN12591717. The evidence synthesis is registered as PROSPERO CRD42014008890. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.

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Development and preliminary testing of a framework for quantifying local service provision for people with dementia

Hughes

Ahmed

Clarkson

et al. 2020

QAOA

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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.

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Specialist services in early diagnosis and support for older people with dementia in England: Staff roles and service mix

Cited by 3 publications

References 14 publications

Care Coordination for Older People in the Non-Statutory Sector: Activities, Time Use and Costs

Care Coordination for Older People in the Non-Statutory Sector: Activities, Time Use and Costs

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Development and preliminary testing of a framework for quantifying local service provision for people with dementia

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