Carer preferences for home support services in later stage dementia

References

• Age UK. (2017). Briefing: Health and care of older people in England. London: Author.
   Google Scholar
• All Party Parliamentary Group on Dementia. (2016). Dementia rarely travels alone: Living with dementia and other conditions - the result of an inquiry that was held last year into dementia and comorbidities. London: Alzheimer's Society.
   Google Scholar
• Andrew, T., Moriarty, J., Levin, E., & Webb, S. (2000). Outcome of referral to social services departments for people with cognitive impairment. International Journal of Geriatric Psychiatry, 15, 406–414. doi:10.1002/(SICI)1099-1166(200005)15:5<406::AID-GPS122>3.0.CO;2-F
   PubMed Web of Science ®Google Scholar
• Arksey, H., Kemp, P. A., Glendinning, C., Kotchetkova, I., & Tozer, R. (2005). Carers’ aspirations and decisions around work and retirement (Report No. 290). London: Department for Work and Pensions.
   Google Scholar
• Ayalon, L., Gum, A. M., Feliciano, L., & Areán, P. A. (2006). Effectiveness of nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia. Archives of Internal Medicine, 166(20), 2182–2188. doi:10.1001/archinte.166.20.2182
   PubMed Web of Science ®Google Scholar
• Bowen, A., Hesketh, A., Patchick, E., Young, A., Davies, L., Vail, A., … Tyrrell, P. (2012). Clinical effectiveness, cost-effectiveness and service users’ perceptions of early, well-resourced communication therapy following a stroke: A randomised controlled trial (the ACT NoW Study). Health Technology Assessment, 16(26), 1–160. doi:10.3310/hta16260
   PubMed Web of Science ®Google Scholar
• Burgess, L. (2007). Discrete choice experiments [computer software]. Sydney: Department of Mathematical Sciences, University of Technology. Retrieved from http://crsu.science.uts.edu.au/choice/.
   Google Scholar
• Cascioli, T., Al-Madfai, H., Oborne, P., & Phelps, S. (2008). An evaluation of the needs and service usage of family carers of people with dementia. Quality in Ageing and Older Adults, 9, 18–27. doi: 10.1108/14717794200800011
   Google Scholar
• Chester, H., Clarkson, P., Davies, L., Sutcliffe, C., Davies, S., & Feast, A., … Members of the HOST-D (Home Support in Dementia) Programme Management Group. (2016). People with dementia and carer preferences for home support services in early-stage dementia. Aging & Mental Health, 1–10. doi:10.1080/13607863.2016.1247424
   PubMed Web of Science ®Google Scholar
• Chester, H., Clarkson, P., Davies, L., Sutcliffe, C., Roe, B., Hughes, J., & Challis, D. (2017). A discrete choice experiment to explore carer preferences. Quality in Ageing and Older Adults, 18, 33–43.
   Web of Science ®Google Scholar
• Clarkson, P., Giebel, C. M., Larbey, M., Roe, B., Challis, D., & Hughes, J., … Members of the HoSt-D (Home Support in Dementia) Programme Management Group. (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, 186–196. doi: 10.1111/jan.12737
   PubMed Web of Science ®Google Scholar
• Clarkson, P., Hughes, J., Xie, C., Larbey, M., Roe, B., & Giebel, C., … Members of the HoSt-D (Home Support in Dementia) Programme Management Group. (2017). Overview of systematic reviews: Effective home support in dementia care, components and impacts – Stage 1, psychosocial interventions for dementia. Journal of Advanced Nursing. doi: 10.1111/jan.13362
   Web of Science ®Google Scholar
• Coast, J., & Horrocks, S. (2007). Developing attributes and levels for discrete choice experiments using qualitative methods. Journal of Health Services Research and Policy, 12, 25–30. doi: 10.1258/135581907779497602
   PubMedGoogle Scholar
• Coast, J., Al-Janabi, H., Sutton, E., Horrocks, S., Vosper, J., Swancutt, D., & Flynn, T. (2012). Using qualitative methods for attribute development for discrete choice experiments: Issues and recommendations. Health Economics, 21, 730–741.
   PubMed Web of Science ®Google Scholar
• Curtice, L., & Fraser, F. (2000). The domiciliary care market in Scotland: Quasi- markets revisited. Health and Social Care in the Community, 8, 260–268. doi: 10.1046/j.1365-2524.2000.00248.x
   PubMed Web of Science ®Google Scholar
• Davies, B., Fernandez, J., & Nomer, B. (2000). Equity and efficiency policy in community care: Needs, service productivities, efficiencies and their implications. (PSSRU Studies) Aldershot: Ashgate.
   Google Scholar
• Department of Health. (2009). Living well with dementia: A national dementia strategy. London: Author.
   Google Scholar
• Department of Health. (2013). Dementia: A state of the nation report on dementia care and support in England. London: Author.
   Google Scholar
• Dolan, P., Gudex, C., Kind, P., & Williams, A. (1995). A social tariff for euroqol: Results from a UK general population survey (Discussion Paper No. 138). York: Centre for Health Economics, University of York.
   Google Scholar
• Elvish, R., Lever, S.-J., Johnstone, J., Cawley, R., & Keady, J. (2013). Psychological interventions for carers of people with dementia: A systematic review of quantitative and qualitative evidence. Counselling and Psychotherapy Research, 13, 106–125. doi:14733145.2012.739632
   Google Scholar
• EuroQol Group. (1990). EuroQol-a new facility for the measurement of health-related quality of life. Health Policy, 16, 199–208. doi: 10.1016/0168-8510(90)90421-9
   PubMed Web of Science ®Google Scholar
• Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22, 37–51. doi: 10.1037/0882-7974.22.1.37
   PubMed Web of Science ®Google Scholar
• Giebel, C., Roe, B., Hodgson, A., Britt, D., Clarkson, P., & Members of the HoST-D (Home Support in Dementia) Programme Management Group & Patient Public and Carer Involvement Groups. (2017). Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection. Dementia, 1–14. doi: 10.1177/1471301216687698
   Google Scholar
• Green, P., & Srinivasan, V. (1990). Conjoint analysis in marketing: New developments with implications for research and practice. Journal of Marketing, 54, 3–19. doi: 10.2307/1251756
   Web of Science ®Google Scholar
• Hall, J., Kenny, P., & Hossain, I. (2007). The provision of informal care in terminal illness: An analysis of carers’ needs using a discrete choice experiment (CHERE Working Paper 2007/12). Sydney: Centre for Health Economics Research and Evaluation, Faculty of Business.
   Google Scholar
• Hensher, D., Rose, J., & Greene, W. (2005). Applied choice analysis: A primer. Cambridge: Cambridge University Press.
   Google Scholar
• Hirst, M. (2005). Carer distress: A prospective, population-based study. Social Science & Medicine, 61, 697–708. doi: 10.1016/j.socscimed.2005.01.001
   PubMed Web of Science ®Google Scholar
• Kim, S. Y., Yoo, E. Y., Jung, M. Y., Park, S. H., & Park, J. H. (2012). A systematic review of the effects of occupational therapy for persons with dementia: A meta-analysis of randomized controlled trials. NeuroRehabilitation, 31, 107–115. doi: 10.3233/NRE-2012-0779
   PubMed Web of Science ®Google Scholar
• Knapp, M., King, D., Romeo, R., Schehl, B., Barber, J., Griffin, M., … Livingston, G. (2013). Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): A pragmatic randomised controlled trial. British Medical Journal, 347, f6342. doi: 10.1136/bmj.f6342
   PubMed Web of Science ®Google Scholar
• Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernández, J.L., … Stewart, R. (2007). Dementia UK. London: PSSRU, London School of Economics and the Institute of Psychiatry for the Alzheimer's Society.
   Google Scholar
• Kong, E. H., Evans, L. K., & Guevara, J. P. (2009). Nonpharmacological intervention for agitation in dementia: A systematic review and meta-analysis. Aging & Mental Health, 13, 512–520. doi: 10.1080/13607860902774394
   PubMed Web of Science ®Google Scholar
• Kosloski, K., & Montgomery, R. J. V. (1993). The effects of respite on caregivers of Alzheimer's patients: One-year evaluation of the michigan model respite programs. Journal of Applied Gerontology, 12, 4–17. doi: 10.1177/073346489301200102
   Web of Science ®Google Scholar
• Lancsar, E., & Louviere, J. (2008). Conducting discrete choice experiments to inform healthcare decision making: A user's guide. PharmacoEconomics, 26, 661–677. doi:10.2165/00019053-200826080-00004
   PubMed Web of Science ®Google Scholar
• Lawton, M. P., Brody, E. M., & Saperstein, A. R. (1989). A controlled study of respite service for caregivers of Alzheimer's patients. The Gerontologist, 29, 8–16. doi: 10.1093/geront/29.1.8
   PubMed Web of Science ®Google Scholar
• Lee, H., & Cameron, M. H. (2004). Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews, (1), Art. no. CD004396. doi: 10.1002/14651858.CD004396.pub2
   Google Scholar
• Levin, E., Sinclair, I., & Gorbach, P. (1989). Families, services and confusion in old age. Aldershot: Gower.
   Google Scholar
• Li, R., Cooper, C., Austin, A., & Livingston, G. (2013). Do changes in coping style explain the effectiveness of interventions for psychological morbidity in family carers of people with dementia? A systematic review and meta-analysis. International Psychogeriatrics, 25, 204–214. doi: 10.1017/S1041610212001755
   PubMed Web of Science ®Google Scholar
• Logsdon, R. G., McCurry, S. M., & Teri, L. (2007). Evidence-based interventions to improve quality of life for individuals with Dementia, Alzheimers Care Today, 8, 309–318. doi: 10.1097/01.ALCAT.0000297151.12774.46
   PubMedGoogle Scholar
• Losada, A., Márquez-González, M., & Romero-Moreno, R. (2011). Mechanisms of action of a psychological intervention for dementia caregivers: Effects of behavioural activation and modification of dysfunctional thoughts. International Journal of Geriatric Psychiatry, 26, 1119–1127. doi: 10.1002/gps.2648
   PubMed Web of Science ®Google Scholar
• Martin, S., Kelly, G., Kernohan, W. G., McCreight, B., & Nugent, C. (2008). Smart home technologies for health and social care support. Cochrane Database of Systematic Reviews, (4), Art. no. CD006412. doi: 10.1002/14651858.CD006412.pub2
   PubMed Web of Science ®Google Scholar
• Miller, G. A. (1956). The magical number seven, plus or minus two: Some limits on our capacity for processing information. Psychological Review, 63, 81–97. doi: 10.1037/h0043158
   PubMed Web of Science ®Google Scholar
• Moise, P., Schwarzinger, M., & Um, M. Y. (2004). Dementia care in 9 OECD countries: A comparative analysis (OECD Health Working Papers No. 13). Paris: OECD Publishing.
   Google Scholar
• National Institute for Health and Clinical Excellence and Social Care Institute for Excellence. (2011). Dementia: Supporting people with dementia and their carers in health and social care. Care guideline (amended March 2011). London: Author.
   Google Scholar
• Neal, M., & Barton Wright, P. (2003). Validation therapy for dementia. Cochrane Database of Systematic Reviews, (3), Art no. CD001394. doi: 10.1002/14651858.CD001394
   Google Scholar
• Newbronner, L., Chamberlain, R., Borthwick, R., Baxter, M., & Glendinning, C. (2013). A road less rocky: Supporting carers of people with dementia. London: Carers Trust.
   Google Scholar
• Nieboer, A., Koolman, X., & Stolk, E. (2010). Preferences for long-term care services: Willingness to pay estimates derived from a discrete choice experiment. Social Science and Medicine, 70, 1317–1325. doi: 10.1016/j.socscimed.2009.12.027
   PubMed Web of Science ®Google Scholar
• Olazarán, J., Reisberg, B., Clare, L., Cruz, I., Peña-Casanova, J., Del Ser, T., … Muñiz, R. (2010). Non-pharmacological therapies in Alzheimer's disease: A systematic review of efficacy. Dementia and Geriatric Cognitive Disorders, 30, 161–178. doi: 10.1159/000316119
   PubMed Web of Science ®Google Scholar
• Price, J. D., Hermans, D., & Grimley Evans, J. (2001). Subjective barriers to prevent wandering of cognitively impaired people. Cochrane Database of Systematic Reviews, (1). Art. no. CD001932. doi: 10.1002/14651858.CD001932
   PubMedGoogle Scholar
• Riordan, J. M., & Bennett, A. V. (1998). An evaluation of an augmented domiciliary service to older people with dementia and their carers. Aging & Mental Health, 2, 137–143. doi: 10.1080/13607869856821
   Web of Science ®Google Scholar
• Rothera, I., Jones, R., Harwood, R., Avery, A. J., Fisher, K., James, V., … Waite, J. (2008). An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. International Journal of Geriatric Psychiatry, 23, 65–72. doi: 10.1002/gps.1841
   PubMed Web of Science ®Google Scholar
• Ryan, M., Bate, A., Eastmond, C., & Ludbrook, A. (2001). Use of discrete choice experiments to elicit preferences. Quality in Health Care, 10(Suppl I), i55–i60. doi:10.1136/qhc.0100055
   PubMedGoogle Scholar
• Ryan, M., Gerard, K., & Amaya-Amaya, M. (Eds.). (2008). Using discrete choice experiments to value health and health care. New York, NY: Springer.
   Google Scholar
• Ryan, M., Netten, A., Skåtun, D., & Smith, P. (2006). Using discrete choice experiments to estimate a preference-based measure of outcome–an application to social care for older people. Journal of Health Economics, 25, 927–944. doi: 10.1016/j.jhealeco.2006.01.001
   PubMed Web of Science ®Google Scholar
• Sloane, N. (2010). A library of orthogonal arrays [software]. Retrieved from http://neilsloane.com/oadir/.
   Google Scholar
• Spector, A., Davies, S., Woods, B., & Orrell, M. (2000). Reality orientation for dementia: A systematic review of the evidence of effectiveness from randomized controlled trials. The Gerontologist, 40, 206–212. doi: 10.1093/geront/40.2.206
   PubMed Web of Science ®Google Scholar
• Stirling, C. M., Dwan, C. A., & McKenzie, A. R. (2014). Why carers use adult day respite: A mixed method case study. BMC Health Services Research, 14, 245–253. doi: 10.1186/1472-6963-14-245
   PubMed Web of Science ®Google Scholar
• Turner, D., Tarrant, C., Windridge, K., Bryan, S., Boulton, M., Freeman, G., & Baker, R. (2007). Do patients value continuity of care in general practice? An investigation using stated preference discrete choice experiments. Journal of Health Services Research and Policy, 12, 132–137. doi: 10.1258/135581907781543021
   PubMedGoogle Scholar
• United Kingdom Home Care Association. (2013). An overview of the UK domiciliary care sector. Sutton: Author.
   Google Scholar
• Van Selm, M., & Jankowski, N. W. (2006). Conducting online surveys. Quality & Quantity, 40, 435–456. doi: 10.1007/s11135-005-8081-8
   Web of Science ®Google Scholar
• Ware, P., Matosevic, T., Forder, J., Hardy, B., Kendall, J., Knapp, M., & Wistow, G. (2001). Movement and change: Independent sector domiciliary care providers between 1995 and 1999. Health and Social Care in the Community, 9, 334–340. doi: 10.1046/j.1365-2524.2001.03111.x
   PubMed Web of Science ®Google Scholar
• Wills, W., & Soliman, A. (2001). Understanding the needs of the family carers of people with dementia. Mental Health Review, 6, 25–28. doi: 10.1108/13619322200100017
   Google Scholar
• Woods, R. T., Wills, W., Higginson, I. J., Hobbins, J., & Whitby, M. (2003). Support in the community for people with dementia and their carers: A comparative outcome study of specialist mental health service interventions. International Journal of Geriatric Psychiatry, 18, 298–307. doi:10.002/gps.822
   PubMed Web of Science ®Google Scholar