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Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study

  • Helen Chester (a1), Paul Clarkson (a1), Jane Hughes (a1), Ian Russell (a2), Joan Beresford (a1), Linda Davies (a3), David Jolley (a1), Julie Peconi (a2), Fiona Poland (a4), Chris Roberts (a5), Caroline Sutcliffe (a1), David Challis (a1) and Members of the HoSt-D (Home Support in Dementia) Programme Management Group...



Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers.


This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers.


This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.


Corresponding author

Correspondence should be addressed to: Dr Helen Chester, Personal Social Services Research Unit (PSSRU), 2nd Floor Crawford House, University of Manchester, M13 9QS, UK. Phone: 0161 275 5345. Email:


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Alzheimer's Society (2014). Dementia UK: 2014 Edition. London: Alzheimer's Society.
Austin, P. C. (2011). An introduction to propensity score methods for reducing the effects of confounding in observational studies. Multivariate Behavioral Research, 46, 399424.
Beecham, J. K. and Knapp, M. R. J. (1992). Costing psychiatric interventions. In Thornicroft, G., Brewin, C. and Wing, J. K. (eds.), Measuring Mental Health Needs (pp. 200224). London: Gaskell.
Berger, M. L., Dreyer, N., Anderson, F., Towse, M. A., Sedrakyan, A. and Normand, S.-L. (2012). Prospective observational studies to assess comparative effectiveness: the ISPOR good research practices task force report. Value in Health, 15, 217230.
Bowling, A. (1994). Social networks and social support among older people and implications for emotional well-being and psychiatric morbidity. International Review of Psychiatry, 6, 4158.
Brewer, J. D. (2000). Ethnography. Buckingham: Open University Press.
Bryan, S., Hardyman, W., Bentham, P., Buckley, A and Laight, A. (2005). Proxy completion of EQ-5D in patients with dementia. Quality of Life Research, 14, 107118.
Bucks, R. S., Ashworth, D. L., Wilcock, G. K. and Siegfried, K. (1996). Assessment of activities of daily living in dementia: development of the Bristol activities of daily living scale. Age and Ageing, 25, 113120.
Burns, A., O'Brien, J. and Ames, D. (2005). Dementia. 3rd edn. London: Hodder Arnold.
Cahill, S. and Diaz-Ponce, A. (2011). “I hate having nobody here. I'd like to know where they all are”: can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment? Aging and Mental Health, 15, 562572.
Carpentier, N. and Grenier, A. (2012). Successful linkage between formal and informal care systems: the mobilization of help by caregivers of persons with Alzheimer's disease. Qualitative Health Research, 22, 13301344.
Challis, D. and Davies, B. (1986). Case Management in Community Care. Aldershot: Gower.
Challis, D., Chesterman, R., Luckett, R., Stewart, K. and Chessum, R. (2002). Care Management in Social and Primary Health Care: The Gateshead Community Care Scheme. Aldershot: Ashgate.
Challis, D. et al. (2010). Community Support Services for People with Dementia: The Relative Costs and Benefits of Specialist and Generic Domiciliary Care Services. Discussion Paper M245-3. Manchester: PSSRU.
Challis, D. et al. (2004). The value of specialist clinical assessment of older people prior to entry to care homes. Age and Ageing, 33, 2534.
Challis, D., Sutcliffe, C., Hughes, J., von Abendorff, R., Brown, P. and Chesterman, J. (2016). Supporting People with Dementia at Home. London: Routledge.
Clarkson, P., Brand, C., Hughes, J. and Challis, D. (2011). Integrating assessments of older people: examining evidence and impact from a randomized controlled trial. Age and Ageing, 40, 388391.
Clarkson, P. et al. (2016). A protocol for a systematic review of effective home support to people with dementia and their carers: components and impacts. Journal of Advanced Nursing, 72, 186196.
Clarkson, P. et al. (submitted). Overview of systematic reviews: effective home support in dementia care, components and impacts – stage 1, psychosocial interventions for dementia. Journal of Advanced Nursing.
Claxton, K. et al. (2015). Methods for the estimation of the national institute for health and care excellence cost-effectiveness threshold. Health Technology Assessment, 19, 14.
Dawson, A., Bowes, A., Kelly, F., Velzke, K. and Ward, R. (2015). Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach, BMC Geriatrics, 15, 59, doi 10.1186/s12877-015-0053-9.
Davies, L. M. et al. (2008). A randomized trial of the cost-utility of second-generation antipsychotics in people with psychosis and eligible for Clozapine. Value in Health, 11, 549562.
Department of Health (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health.
Department of Health (2012). Prime Minister's Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015. London: Department of Health.
Devlin, N., Shah, K. Feng, Y., Mulhern, B. and van Hout, B. (2016). Valuing Health-Related Quality of Life: An EQ-5D-5L Value Set for England. Office of Health Economics Research Paper 16/01. London: Office of Health Economics.
Drummond, M., Sculpher, M., Torrance, G., O'Brien, B. and Stoddart, G. (2005). Methods for the Economic Evaluation of Health Care Programmes, 3rd edn. Oxford: Oxford University Press.
Fenwick, E., Claxton, K. and Sculpher, M. (2001). Representing uncertainty: the role of cost-effectiveness acceptability curves. Health Economics, 10, 779787.
Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M. et al. (2005). Global prevalence of dementia: a Delphi consensus study. The Lancet, 366, 21122117.
Goldberg, D. P. (1978). Manual of the General Health Questionnaire. Windsor: NFER-Nelson.
Guest, G., Bruce, A. and Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18, 5982.
Herdman, M. et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20, 17271736.
Hoe, J., Katona, C., Roch, B. and Livingston, G. (2005). Use of the QOL-AD for measuring quality of life in people with severe dementia – the LASER-AD study, Age and Ageing, 34, 130135.
House of Commons (2005). Mental Capacity Act 2005, Chapter 9. London: House of Commons.
InferMed Limited (2015). MACRO Electronic Data Capture: Advanced Data Collection for Clinical Research. Available at:; last accessed 02 February 2015.
Johnson, R. B., Onwuegbuzie, A. J. and Turner, L. A. (2007). Toward a definition of mixed methods research. Journal of Mixed Methods Research, 1, 112133.
Kline, P. (1994). An Easy Guide to Factor Analysis. London: Routledge.
Knapp, M. et al. (2007). Dementia UK. London: PSSRU, London School of Economics and the Institute of Psychiatry for the Alzheimer's Society.
Levin, E., Sinclair, I. and Gorbach, P. (1989). Families Confusion and Old Age. Aldershot: Gower.
Lewis, S. J. and Russell, A. J. (2011). Being embedded: a way forward for ethnographic research. Ethnography, 12, 398416.
Low, L.-F. and Fletcher, J. (2015). Models of home care services for persons with dementia: a narrative review. International Psychogeriatrics, 27, 15931600 doi:10.1017/S1041610215000137.
MacKnight, C. and Rockwood, K. (2001). Use of the chronic disease score to measure co-morbidity in the Canadian study of healthy ageing. International Psychogeriatrics, 13, 137142.
Magaziner, J. (1997). Use of proxies to measure health and functional outcomes in effectiveness research in persons with Alzheimer disease and related disorders. Alzheimer Disease and Associated Disorders, 11, 168174.
Molloy, D. and Standish, T. (1997). Mental status and neuropsychological assessment: a guide to the Standardised Mini-Mental State Examination. International Psychogeriatrics, 9, 8794.
Moriarty, J. and Webb, S. (2000). Part of their Lives: Community Care for Older People with Dementia. Bristol: Policy Press.
Moyle, W. (2010). Is quality of life being compromised in people with dementia in long-term care? International Journal of Older People Nursing, 5, 245252.
Mozley, C. et al. (1999). ‘Not knowing where I am doesn't mean I don't know what I like': cognitive impairment and quality of life responses in elderly people. International Journal of Geriatric Psychiatry, 14, 776783. doi: 10.1002/(SICI)1099-1166(199909)14:9<776::AID-GPS13>3.0.CO;2-C.
Mulhern, B. et al. (2013). Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technology Assessment, 17, 1–140.
Noelker, L. and Bass, D. (1989). Home care for elderly persons: linkages between formal and informal caregivers. Journal of Gerontology: Social Sciences, 44, S63S70.
O'Reilly, M. and Parker, N. (2013). Unsatisfactory saturation: a critical exploration of the notion of saturated sample sizes in qualitative research. Qualitative Research, 13, 190197.
Orgeta, V. et al. (2015). Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomized controlled trial. Health Technology Assessment, 19, 1108.
Personal Social Services Research Unit (PSSRU) (2015). Effective home support in dementia care: components, impacts and costs of tertiary prevention. A Five Year Research Programme. Manchester: PSSRU. Available at:; last accessed 30 August 2016.
Poland, F. and Birt, L. (2016). The agentic person: shifting the focus of care. Aging and Mental Health, 20, 771772. doi: 10.1080/13607863.2016.1146873.
Pritchard, E. and Dewing, J. (2001). A multi-method evaluation of an independent dementia care service and its approach. Ageing and Mental Health, 5, 6372.
Raftery, J. (2014). NICE's cost-effectiveness range: should it be lowered? PharmacoEconomics, 32, 613615.
Robinson, A. et al. (2011). Mixed methods data collection in dementia research: a “progressive engagement” approach. Journal of Mixed Methods Research, 5, 330344.
Rogerson, P. (2001). Data reduction: factor analysis and cluster analysis. In Rogerson, P. (ed.), Statistical Methods for Geography. London: SAGE Publications.
Rossor, M. and Knapp, M. (2015). Can we model, a cognitive footprint of interventions and policies to help meet the global challenge of dementia? The Lancet, 386, 10081010.
Rothera, I. et al. (2008). An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. International Journal of Geriatric Psychiatry, 23, 6572.
Selai, C. and Trimble, M. (1999). Assessing quality of life in dementia. Ageing and Mental Health, 3, 101111.
Smith, S. C. et al. (2005). Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment, 9, 193.
Trojano, M., Pellegrini, F., Paolicelli, D., Fuiani, A. and Di Renzo, V. (2009). Observational studies: propensity score analysis of non-randomized data. The International MS Journal, 16, 9097.
van Hout, B. et al. (2012). Interim scoring for the EQ-5D-5L: Mapping the EQ-5D-5L to EQ-5D-3L value sets. Value in Health, 15, 708715.
Venables, D., Reilly, S., Challis, D., Hughes, J. 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, 187194.
Vernooji-Dassen, M., Felling, A., Brummelkamp, E., Dauzenberg, M., van den Bos, G. and Grol, R. (1999). Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a short sense of competence questionnaire (SSCQ) suitable for clinical practice. Journal of the American Geriatrics Society, 47, 256257.
Wenger, C. (1991) A network typology: from theory to practice, Journal of Aging Studies, 5, 147162.
Wenger, G. and Tucker, I. (2002) Using network variation in practice: identification of support network type, Health and Social Care in the Community, 10, 2835.
Wistow, G. (2012). Still a fine mess? Local government and the NHS 1962 to 2012. Journal of Integrated Care, 20, 101114.
Zarit, S. and Leitsch, S. (2001). Developing and evaluating community based intervention programs for Alzheimer's patients and their caregivers. Aging and Mental Health, 5, S84S98.
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649655.
Zarit, S., Stephens, M., Townsend, A. and Greene, R. (1998). Stress reduction for family caregivers: effects of adult day care use. Journal of Gerontological Social Science, 53B, S267S277.
Zarit, S., Gaugler, J. and Jarrott, S. (1999). Useful services for families: research findings and directions. International Journal of Geriatric Psychiatry, 14, 165181.



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