Dementia Care

DEMENTIA CARE


Mapping Specialist Dementia Services in Northwest England

(Principal Investigator: Professor David Challis)


This study involved a mapping survey of dementia services in the Northwest of England. The purpose of this cross-sectional study was: to identify all specialist services/teams involved in the delivery of care for people with dementia and their carers in the Northwest of England; and to describe in detail the pattern of variation, substitution and complementarity between services and areas in the region. The study was funded by the NHS Exec North West from 1999 to 2005.


Reports



Publications


Venables D, Reilly S, Hughes J, Challis DJ. and Abendstern M. (2006). Standards of care in home care services: a comparison of specialist and generic services for older people with dementia. Aging and Mental Health, 10, 2, 187-194.


Reilly S, Venables D, Hughes J, Abendstern M and Challis DJ. (2006). Standards of day care in day hospitals and day centres: a comparison of services for older people with dementia. International Journal of Geriatric Psychiatry, 21, 460-468.


Reilly S, Abendstern M, Hughes J, Challis DJ, Venables D. and Pedersen I. (2006). Quality in long term care homes for people with dementia: an assessment of specialist provision. Ageing and Society, 26, 649-668.



Improving Health Services for European Citizens with Dementia: Best Practice Strategies for Transition from Home Care to Long-Term Residential and Nursing Home Care (RightTimePlaceCare)

(UK Principal Investigator: Professor David Challis)


Dementia affects some six million people across Europe. There are variations in the capacity and extent of home support services for older people with dementia. These shape the extent to which people are able to be supported at home indifferent European countries. Therefore, despite the presence of similar policies advocating home support in the European countries, many of which have Dementia Strategies in place, the margin of care at which people are seen to need nursing or residential care varies significantly. The study, in eight European countries, was funded by the EU (2010 to 2013), and identified the differences in the capacity of community services to support people at home; the reasons for this variation; and good practice strategies for more effective and efficient care for some of our most vulnerable older people.


Reports and Summaries



Publications


Verbeek H, Meyer G, Leino-Kilpi H, Zabalegui A, Hallberg IR, Soto ME, Challis D, Sauerland D, Hamers J, and The Right Time Place Care Consortium (2012). A European study investigating patterns of transition from home care towards institutional dementia care: The protocol of a Right Time Place Care study. BMC Public Health, 12(1), 1.


Hallberg IR, Leino-Kilpi H, Meyer G, Raamat K, Soto Martin M, Sutcliffe C, Zabalegui A, Zwakhalen S. and Karlsson S. (2013). Dementia care in eight European countries: Developing a mapping system to explore systems. Journal of Nursing Scholarship, 45(4), 412-424.


Afram B, Stephan A, Verbeek H, Bleijlevens M, Suhonen R, Sutcliffe C, Raamat K, Cabrera E, Soto M, Hallberg I, Meyer G. and Hamers J. (2014). Reasons for institutionalization of people with dementia: Informal care giver reports from 8 European countries. Journal of the American Medical Directors Association, 15, 108-116.


Beerens H, Sutcliffe C, Renom-Guiteras A, Soto M, Suhonen R, Zabalegui A, Bokberg C, Saks K. and Hamers J. (2014). Quality of life and quality of care for people with dementia receiving long term institutional care or professional home care: The European Right Time Place Care study. Journal of the American Medical Directors Association, 15(1),54-61.


Beerens HC, Zwakhalen SMG, Verbeek H, Ruwaard D, Ambergen AW, Leino-Kilpi H, Stephan A, Zabalegui A, Soto M, Saks K, Bokberg C, Sutcliffe CL. and Hamers JPH. (2014). Change in quality of life of people with dementia recently admitted to long-term care facilities. Journal of Advanced Nursing, 71(6), 1435-1447.


Bleijlevens MHC, Stolt M, Stephan A, Zabalegui A, Saks K, Sutcliffe C, Lethin C, Soto ME. and Zwakhalen, SMG and the RightTimePlaceCare Consortium. (2014). Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European Right Time Place Care prospective cohort study. Journal of Advanced Nursing, 71(6), 1378-1391.


de Mauleon A, Sourdet S, Renom-Guiteras A, Gillette-Guyonnet S, Leino-Kilpi H, Karlsson S, Bleijlevens M, Zabalegui A, Saks K, Vellas B, Jolley D. and Soto M. (2014). Associated Factors With Antipsychotic Use in Long-Term Institutional Care in Eight European Countries: Results From the Right Time Place Care Study. Journal of the American Medical Directors Association, 15(11), 812-818.


Giebel CM, Sutcliffe C, Stolt M, Karlsson S, Renom-Guiteras A, Soto M, Verbeek H, Zabalegui A. and Challis D. (2014). Deterioration of Basic Activities of Daily Living and their Impact on Quality of Life across different cognitive stages of dementia: a European study. International Psychogeriatrics, 26(8), 1283-1293.


Rahm Hallberg I, Cabrera E, Jolley D, Raamat K, Renom-Guiteras A, Verbeek H, Soto M, Stolt M. and Karlsson S. (2014). Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care. Dementia, https://doi.org/10.1177/1471301214548520


Stephan A, Afram B, Koskenniemi J, Verbeek H, Soto ME, Bleijlevens MHC, Sutcliffe C, Lethin C, Rico E, Saks K, Hamers JPH. and Meyer G. (2014). Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals. Journal of Advanced Nursing, 71(6), 1392-1404.


Sutcliffe CL, Jasper R, Roe B, Jolley D, Crook A, and Challis DJ. (2014). Inter-professional perspectives of dementia services and care in England: Outcomes of a focus group study. Dementia, 15(5): 1002-1020.


Wuebker A, Zwakhalen AMG, Challis D, Suhonen R, Karlsson S, Zabalegui A, Soto M, Saks K. and Sauerland D. (2014). Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries. European Journal of Health Economics, 16(7),689-707.


Zabalegui A, Hamers JPH, Karlsson, S, Leino-Kilpi H, Renom-Guitas A, Saks K, Soto M, Sutcliffe C. and Cabrera E. (2014). Best practices interventions to improve quality of care of people with dementia living at home. Patient Education Counseling, 95,175-184.


Afram B, Verbeek H, Leino-Kilpi H, Karlsson S, Soto ME, Renom-Guiteras A, Saks K, Zabalegui A, Hamers JPH. and the RightTimePlaceCare Consortium. (2015). Predicting institutional long-term care admission in dementia: a mixed-methods study of informal caregivers' reports. Journal of Advanced Nursing, 71(6), 1351-1362.


Cabrera E, Sutcliffe C, Verbeek H, Saks K, Soto-Martin M, Meyer G, Leino-Kilpi H., Karlsson S. and Zabalegui A. (2015). Non-pharmacological interventions as a best practice strategy in people with dementia living in nursing homes. A systematic review. European Geriatric Medicine, 6(2), 134-150.


Costa N, Wuebker A, Binot I, Demauleon A, Zawkhalen S, Challis D, Stolt M, Stephan A, Zabalegui A, Saks K, Vellas B, Molinier L, Uerland D. and Martin Soto ME. (2015). Cost of Care of Agitation and Aggression associated with Dementia in 8 European Countries: Results from the RightTimePlaceCare (RTPC) Study. Value in Health. 18(3): A118-A118.


Giebel CM, Sutcliffe C. and Challis D. (2015). Activities of daily living and quality of life across different stages of dementia: a UK study. Aging and Mental Health, 19(1), 63-71.


Giebel CM, Sutcliffe C, Renom Guiteras A, Arve S, Rahm-Hallberg I, Soto-Martin M, Zabalegui A, Hamers J, Saks K. and Challis D. (2015). Depressive Symptomatology in Severe Dementia in a European Sample: Prevalence, Associated Factors and Prescription Rate of Anti-Depressants. International Psychogeriatrics, 27(4), 657-667.


Risco E, Cabrera E, Jolley D, Stephan A, Karlsson S, Verbeek H, Saks K, Hupli M, Sourdet S. and Zabalegui A. (2015). The association between physical dependency and the presence of neuropsychiatric symptoms, with the admission of people with dementia to a long-term care institution. International Journal of Nursing Studies,52(5), 980-987.


Sutcliffe CL, Roe B, Jasper R, Jolley D, and Challis D. (2015). People with dementia and carers' experiences of dementia care and services: Outcomes of a focus group study. Dementia, 14(6), 769-787.


Verbeek H, Meyer G, Challis D, Zabalegui A, Soto ME, Saks K, Leino-Kilpi H, Karlsson S. and Hamers JPH. (2015). Inter-country exploration of factors associated with admission to long-term institutional dementia care: evidence from the RightTimePlaceCare project. Journal of Advanced Nursing, 71(6), 1338-1350.


Giebel C, Sutcliffe C, Verbeek H, Zabalegui A, Soto M, Rahm Hallberg I, Saks K, Renom-Guiteras A, Suhonen R. and Challis D. (2016). Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care. International Psychogeriatrics, 28(04), 621-630.


Lethin C, Leino-Kilpi H, Roe B, Soto Martin M, Saks K, Stephan A, Zwakhalen S, Zabalegui A. and Karlsson S. (2016). Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study. BMC Geriatrics, 16, 32.


Sutcliffe CL, Giebel CM, Jolley D. and Challis D. (2016). Experience of burden in carers of people with dementia at the margins of long-term care. International Journal of Geriatric Psychiatry, 31(2), 101-108.


Tucker S, Brand C, Sutcliffe C, Challis D, Saks K, Verbeek H, Cabrera E, Karlsson S, Leino-Kilpi H, Stephan A. and Soto ME. (2016) What Makes Institutional Long-Term Care the Most Appropriate Setting for People with Dementia? Exploring the Influence of Client Characteristics, Decision-Maker Attributes, and Country in 8 European Nations. Journal of the American Medical Directors Association. 17(5): 465.e9-465.e15.


Tucker S, Sutcliffe C, Bowns I, Challis D, Saks K, Verbeek H, Cabrera E, Karlsson S, Leino-Kilpi H, Meyer G. and Soto ME. (2016) Improving the mix of institutional and community care for older people with dementia: an application of the balance of care approach in eight European countries. Aging and Mental Health, 20(12): 13271338.


Lethin C, Renom-Guiteras A, Zwakhalen S, Soto-Martin M, Saks K, Zabalegui A, Challis D, Nilsson C. and Karlsson S. (2017) Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging and Mental Health. 21(11): 1138-1146.


Sutcliffe C, Giebel C, Bleijlevens M, Lethin C, Stolt M, Saks K, Soto ME, Meyer G, Zabelegui A, Chester H. and Challis D. (2017) Caring for a Person with Dementia on the Margins of Long-Term Care: A Perspective on Burden from 8 European Countries. Journal of the American Medical Directors Association. 18(11): 967-973.


Costa N, Wuebker A, De Mauleon A, Zwakhalen SMG, Challis D, Leino-Kilpi H, Halberg IR, Stephan A, Zabalegui A, Saks K, Molinier L, Wimo A, Vellas B, Sauerland D, Binot I, Soto ME. and the RightTimePlaceCare Consortium. (2018) Costs of care of Agitation Associated with Dementia in 8 European countries: Results from the RightTimePlaceCare Study. Journal of the American Medical Directors Association. 19(1). 95.e1-95.e10.


Further information about this research project can be found on the website http://cordis.europa.eu/result/rcn/146071_en.html



South Asian Voices Enabling Dementia Care (SAVE-D)

(Principal Investigator: Professor David Challis)


South Asian (SA) elders with memory problems often do not access health and social services for memory problems. Low consultation rates with GPs for memory problems result in SA elders’ reduced access to old age psychiatry services. Therefore, dementia and depression among SA elders remain under-diagnosed and under-treated. Lower consultation rates may be linked with SA elders’ different knowledge about memory problems/dementia and the social stigma associated with mental health problems. Some evidence from previous studies shows SA elders to have less knowledge of dementia than White elders. However, the specific Explanatory Models (EMs) used by SA elders to understand and describe memory problems remain under-researched. The aim of this project was to improve our knowledge and understanding of the factors that determine the recognition of and consultation for memory problems among SA older people. More specifically, the project aimed to explore and understand the EMs for memory problems prevalent within SA communities in the UK. The study was funded by NIHR RfPB and was undertaken between 2011 and 2013.


Reports and Summaries



Publications


Kampanellou, E., Wilberforce, M., Worden, A., Giebel, C., Challis, D. and Bhui, K., 2020. The Barts Explanatory Model Inventory for Dementia: An item reduction approach based on responses from South Asian communities. International Journal of Geriatric Psychiatry. 35, 916-925. https://onlinelibrary.wiley.com/doi/10.1002/gps.5313


Giebel, CM, Worden, A, Challis, D, Jolley, D, Bhui, KS, Lambat, A, Kampanellou, E. and Purandare, N. 2019. Age, memory loss and perceptions of dementia in South Asian ethnic minorities Aging and Mental Health. 23(2), 173-182. https://www.tandfonline.com/doi/full/10.1080/13607863.2017.1408772


Giebel, C., Challis, D., Worden, A., Jolley, D., Bhui, K., Lambat, A., & Purandare, N. (2015). Perceptions of self-defined Memory Problems vary in South Asian Minority Older People who consult a GP and those who do not: A mixed-method pilot study. International Journal of Geriatric Psychiatry, 31(6), 375-383.


Giebel, C.M., Zubair, M., Bhui, K.S., Challis, D., Jolley, D., Purandare, N., & Worden, A. (2015). Adaptation of the Bart's Explanatory Model Inventory to Dementia Understanding in South Asian Ethnic Minorities. Aging and Mental Health, 20(6),594-602.


Giebel, C.M., Zubair, M., Jolley, D., Bhui, K.S., Purandare, N., Worden, A., & Challis, D. (2015). South Asian Older Adults with Memory Impairment: Improving Assessment and Access to Dementia Care. International Journal of Geriatric Psychiatry, 30(4), 345-356.



Effective Home Care Support in Dementia Care: Components, Impact and Costs of Tertiary Prevention


[Chief Investigator: Professor David Challis (From the Programme start date in 2013 until 2019)]


This programme grant was funded by the National Institute for Health Research (NIHR) and began in September 2013 ended in March 2020. It was designed to identify different models of home support, systematise them, survey their current operation in England and evaluate their cost-effectiveness in providing care for people with dementia and their carers.   This was done through the following interlinked projects addressing different issues in dementia care.


Evidence Synthesis of Home Support Interventions


The aim of this work was to synthesise the evidence on home support interventions for those with dementia and their carers by means of systematic reviews. They were designed to:

  • Identify the components of effective psychosocial interventions in dementia care.

  • Explicate the outcomes of home support interventions for older people with dementia and/or their carers, which have these components.


There were two reviews:

  1. An overview of previous systematic reviews of psychosocial (i.e. non-pharmacological) interventions for dementia from RCTs in various settings, which was intended to identify their active ingredients, or components.

  2. A systematic review of the effectiveness of home support interventions to older people with dementia, identifying the extent to which components identified from stage 1 are present in different models of support.


National Survey of Approaches to Home Support


This aimed to build a picture of the home support services available across England provided by the local authorities and NHS Trusts. It used survey data with response rates of 82 per cent for Local Authorities and 77 per cent for the NHS Trusts. Overall it provides a unique snapshot of health and social care services for people with dementia in almost two thirds of the local authority areas in England.


Trial of Memory Aids through Dementia Advice Workers in Early Stage Dementia (DESCANT)


This study evaluated the effectiveness and cost-effectiveness of memory aids delivered by Dementia Support Practitioners to people with dementia in its early stages. It involved a randomised controlled trial in a number of NHS Trusts in England and Wales.


Different Home Support Approaches in Later Stage Dementia

This study aimed to:

  • Identify the range and types of home support or ‘care packages’, currently available in a range of local authority areas in England, provided for people with dementia/their carers.

  • Identify the outcomes of each approach through time, in terms of people with dementia’s activities of daily living and quality of life and their carers’ health and sense of competence.

  • Investigate the relative cost-effectiveness of these approaches to home support, combining components in different ways.


Costs to People with Dementia and their Carers and their Relationship to Formal Care

This aimed to:

  • Compare the mix of home care and support recommended by professional staff with that recommended by informal carers to effectively support people with dementia at home.

  • Specify and compare the costs of these recommendations for people with dementia living at home.

  • Data were collected from 14 carers and 14 staff participating in four separate consultation groups.  


Discrete Choice Experiments - Preferences for Support for People with Dementia and their Carers

These examined the preferences of people with dementia and informal carers for different attributes of home support within a home support 'package'. Preferences were assessed with a Discrete Choice Experiment survey, with specific attributes informed by an evidence synthesis and lay consultation. The work was undertaken separately for people with dementia and carers in early stage dementia and also informal carers of those in later stage dementia.


Developing an Economic Model of Approaches to Home Support


The aim was to develop an economic model of the cost-effectiveness of home support for dementia. It had two stages.

  1. Investigating the evidence through a systematic literature review of economic evaluations using the British National Health Service Economic Evaluation Database supplemented by additional references.

  2. To consider the potential impact of different models of home support at the population level in England by synthesising data from a number of sources, particularly the two primary research studies here (namely the trial of memory aids and the study of different home support approaches in later stage dementia)


Final Report



Publications


Davies, S., Hughes, J., Ahmed, S., Clarkson, P. and Challis, D. 2020. Commissioning social care for people with dementia living at home: Findings from a national survey. International Journal of Geriatric Psychiatry. 35(1), 53-59. https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5214


Clarkson, P, Hughes, J, Xie, C, Larbey, M, Roe, B, Giebel, C M, Jolley, D. and Challis, D. 2017. Overview of systematic reviews: Effective home support in dementia care, components and impacts-Stage 1, psychosocial interventions for dementia. Journal Of Advanced Nursing. 73(12), 2845 - 2863.

https://onlinelibrary.wiley.com/doi/abs/10.1111/jan.13362


Chester, H., Beresford, R., Clarkson, P., Entwistle, C., Gillan, V., Hughes, J., Orrell, M., Pitts, R., Russell, I., Symonds, E. and Challis, D. 2021. The Dementia Early Stage Cognitive Aids New Trial intervention: A goal attainment scaling approach to promote self-management. International Journal of Geriatric Psychiatry. 36(5), 784-793. https://onlinelibrary.wiley.com/doi/10.1002/gps.5479


Clarkson, P., Challis, D., Hughes, J., Roe, B., Davies, L., Russell I., Orrell, M., Poland, F., Jolley, D., Kapur, N., Robinson, C., Chester, H., Davies, S., Sutcliffe, C., Peconi, J., Pitts, R., Fegan, G., Islam., S, Gillan, V., Entwistle, C., Beresford, R., Abendstern, M., Giebel, C., Ahmed, S., Jasper, R., Usman, A., Malik, B. and Hayhurst, K. 2021. Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT. Programme Grants for Applied Research. 9, 6. https://doi.org/10.3310/pgfar09060


Clarkson, P., Pitts, R., Islam, S., Peconi, J., Russell, I., Fegan, G., Beresford, R., Entwistle, C., Gillan, V., Orrell, M., Challis, D., Chester, H., Hughes, J., Kapur, N., Roe, B., Malik, B. and Robinson, C. 2021. Dementia Early-Stage Cognitive Aids New Trial (DESCANT) of memory aids and guidance for people with dementia: randomised controlled trial. Journal of Neurology, Neurosurgery and Psychiatry. http://dx.doi.org/10.1136/jnnp-2021-326748


Chester, H., Beresford, R., Clarkson, P., Entwistle, C., Gillan, V., Hughes, J., Orrell, M., Pitts, R., Russell, I. T., Symonds, E. and Challis, D., 2021. Implementing the Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: mixed-method process evaluation alongside a pragmatic randomised trial, Aging & Mental Health. https://www.tandfonline.com/doi/abs/10.1080/13607863.2020.1870204?journalCode=camh20


Hughes, J., Ahmed, S., Clarkson, P., Davies, S., Stewart, K. and Challis, D., 2020. Development and preliminary testing of a framework for quantifying local service provision for people with dementia. Quality In Ageing and Older Adults. 21(3), 193-202. https://www.emerald.com/insight/content/doi/10.1108/QAOA-03-2020-0010/full/html


Abendstern, M., Davies, K., Chester, H., Clarkson, P., Hughes, J., Sutcliffe, C., Poland, F. and Challis, D. 2019. Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia. BMC Geriatrics. 19(1), 227. https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-019-1240-x


Abendstern, M., Davies, K., Poland, F., Chester, H., Clarkson, P., Hughes, J., Sutcliffe, C. and Challis, D. 2019. Reflecting on the research encounter for people in the early stages of dementia: Lessons from an embedded qualitative study. Dementia. https://doi.org/10.1177/1471301219855295


Giebel, CM, Davies, S, Clarkson, P, Sutcliffe, C, Challis, D, Orrell, M, Roe, B, Russell, I, Poland, F, Kapur, N, Roberts, C, Davies, L, Jolley, D, Hughes, J, Tottie, J. and Blyth, R. 2019. Costs of formal and informal care at home for people with dementia: 'Expert panel' opinions from staff and informal carers Dementia-international Journal Of Social Research and Practice. 18(1), 210-227. https://journals.sagepub.com/doi/10.1177/1471301216665705


Chester, H, Clarkson, P, Davies, L, Hughes, J, Islam, Ms, Kapur, N, Orrell, M, Peconi, J, Pitts, R, Poland, F, Russell, I. and Challis, D. 2018. Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial. Trials. 19, 546. https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2933-8


Ahmed, S, Hughes, J, Davies, S, Stewart, K, Orrell, M, Clarkson, P. and CHALLIS, D. 2018. Specialist services in early diagnosis and support for older people with dementia in England: Staff roles and service mix. International Journal of Geriatric Psychiatry. 33(9), 1280-1285. https://onlinelibrary.wiley.com/doi/abs/10.1002/gps.4925


Clarkson, P, Hughes, J, Roe, B, Giebel, CM, Jolley, D, Poland, F, Abendstern, M, Chester, H. and Challis, D. 2018. Systematic review: Effective home support in dementia care, components and impacts - Stage 2, effectiveness of home support interventions. Journal of Advanced Nursing. 74(3), 507-527. https://doi.org/10.1111/jan.13460


Kampanellou, E., Chester, H., Davies, L., Davies, S., Giebel, C., Hughes, J., Challis, D. and Clarkson, P., 2019. Carer preferences for home support services in later stage dementia. Aging & Mental Health. 23(1), 60-68. https://www.tandfonline.com/doi/abs/10.1080/13607863.2017.1394441


Chester, H, Clarkson, P, Davies, L, Sutcliffe, C, Davies, S, Feast, A, Hughes, J. and Challis, D. 2018. People with dementia and carer preferences for home support services in early-stage dementia. Aging & Mental Health. 22(2), 270-279. https://doi.org/10.1080/13607863.2016.1247424


Chester, H, Clarkson, P, Hughes, J, Russell, I, Beresford, J, Davies, L, Jolley, D, Peconi, J, Poland, F, Roberts, C, Sutcliffe, C. and Challis, D. 2017. Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study. International Psychogeriatrics. 29(7), 1213-1221. https://doi.org/10.1017/S1041610217000291