References
- Abendstern, M., Davies, K., Poland, F., Chester, H., Clarkson, P., Hughes, J., … Challis, D. (2019a). Reflecting on the research encounter for people in the early stages of dementia: Lessons from an embedded qualitative study. Dementia. doi:https://doi.org/10.1177/1471301219855295
- Abendstern, M., Jasper, R., Hughes, J., Loynes, N., Sutcliffe, C., & Challis, D. (2019b). Care coordination for older people in England: Does context shape approach? Journal of Social Work, 19(4), 427–449. doi:https://doi.org/10.1177/1468017318762654
- Alwin, J., Persson, J., & Krevers, B. (2013). Perception and significance of an assistive technology intervention - the perspectives of relatives of persons with dementia. Disability and Rehabilitation, 35(18), 1519–1526. doi:https://doi.org/10.3109/09638288.2012.743603
- Alzheimer’s Disease International. (2020). From Plan to Impact III: Maintaining dementia as a priority in unprecedented times. London: Alzheimer’s Disease International.
- Alzheimer’s Society. (2014a). Dementia 2014: Opportunity for change. London: Alzheimer’s Society.
- Alzheimer’s Society. (2014b). The memory handbook: A practical guide to living with memory problems. London: Alzheimer’s Society.
- Baranowski, T., & Stables, G. (2000). Process evaluations of the 5-a-day projects . Health Education & Behavior, 27(2), 157–166. doi:https://doi.org/10.1177/109019810002700202
- Barbosa, A., Nolan, M., Sousa, L., & Figueiredo, D. (2017). Implementing a psycho-educational intervention for care assistants working with people with dementia in aged-care facilities: Facilitators and barriers. Scandinavian Journal of Caring Sciences, 31(2), 222–231. doi:https://doi.org/10.1111/scs.12333
- Basch, C. E., Sliepcevich, E. M., Gold, R. S., Duncan, D. F., & Kolbe, L. J. (1985). Avoiding Type III errors in health education program evaluations: A case study. Health Education Quarterly, 12(4), 315–331. doi:https://doi.org/10.1177/109019818501200311
- Berwig, M., Heinrich, S., Spahlholz, J., Hallensleben, N., Brahler, E., & Gertz, H.-J. (2017). Individualized support for informal caregivers of people with dementia - effectiveness of the German adaptation of REACH II. BMC Geriatrics, 17(1), 286 doi:https://doi.org/10.1186/s12877-017-0678-y
- Black, B., Johnston, D., Rabins, P., Morrison, A., Lyketsos, C., & Samus, Q. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61(12), 2087–2095. doi:https://doi.org/10.1111/jgs.12549
- Blom, M., Zarit, S., Groot Zwaaftink, R., Cuijpers, P., & Pot, A. (2015). Effectiveness of an internet intervention for family caregivers of people with dementia: Results of a randomized controlled trial. PLoS One, 10(2), e0116622. doi:https://doi.org/10.1371/journal.pone.0116622.
- Bowen, G. A. (2008). Naturalistic inquiry and the saturation concept: A research note. Qualitative Research, 8(1), 137–152. doi:https://doi.org/10.1177/1468794107085301
- Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. [Database] doi:https://doi.org/10.1191/1478088706qp063oa
- British Psychological Society. (2018). Evidence briefing: ‘Behaviour that challenges’ in dementia. Leicester: British Psychological Society.
- Challis, D., Sutcliffe, C., Hughes, J., von Abendorff, R., Brown, P., & Chesterman, J. (2009). Supporting people with dementia at home: Challenges and opportunities for the 21st century. London: Routledge.
- Chester, H., Clarkson, P., Davies, L., Hughes, J., Islam, M. S., Kapur, N., … Members of the HoSt-D (Home Support in Dementia) Programme Management Group. (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(1), 546. doi:https://doi.org/10.1186/s13063-018-2933-8
- Chien, W., & Lee, I. (2011). Randomized controlled trial of a dementia care programme for families of home-resided older people with dementia . Journal of Advanced Nursing, 67(4), 774–787. doi:https://doi.org/10.1111/j.1365-2648.2010.05537.x
- Clarkson, P., Hughes, J., Xie, C., Larbey, M., Roe, B., Giebel, C., Jolley, D., … Hallis, D, & Members of the HoSt-D (Home Support in Dementia) Programme 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, 73(12), 2845–2863
- de Vugt, M., & Verhey, F. (2013). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62. doi:https://doi.org/10.1016/j.pneurobio.2013.04.005
- Department of Health and Social Care. (2009). Living well with dementia: A national dementia strategy. London: Department of Health and Social Care.
- Department of Health and Social Care. (2012). Prime Minister’s challenge on dementia: Delivering major improvements in dementia care and research by 2015. London: Department of Health and Social Care.
- Department of Health and Social Care. (2018). Care and Support Statutory Guidance. Available at https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance (last updated 26 October 2018; last accessed 28 February 2020).
- Dias, A., Dewey, M. E., D’Souza, J., Dhume, R., Motghare, D. D., Shaji, K. S., … Patel, V. (2008). The effectiveness of a home care program for supporting caregivers of persons with dementia in developing countries: A randomised controlled trial from Goa, India. PLoS One, 3(6), e2333. doi:https://doi.org/10.1371/journal.pone.0002333.
- Eichler, T., Thyrian, J., Hertel, J., Richter, S., Wucherer, D., Michalowsky, B., … Hoffmann, W. (2016). Unmet needs of community-dwelling primary care patients with dementia in Germany: Prevalence and correlates. Journal of Alzheimer's Disease, 51(3), 847–855. doi:https://doi.org/10.3233/JAD-150935
- Gaugler, J., Kane, R., Kane, R., & Newcomer, R. (2005). Unmet care needs and key outcomes in dementia. Journal of the American Geriatrics Society, 53(12), 2098–2105. doi:https://doi.org/10.1111/j.1532-5415.2005.00495.x
- Hailey, E., Hodge, S., Burns, A., & Orrell, M. (2016). Patients’ and carers’ experiences of UK memory services. International Journal of Geriatric Psychiatry, 31(6), 676–680. doi:https://doi.org/10.1002/gps.4380
- Haynes, A., Brennan, S., Carter, S., O’Connor, D., Schneider, C. H., Turner, T., Gallego, G., & The CIPHER Team. (2014). Protocol for the process evaluation of a complex intervention designed to increase the use of research in health policy and program organisations (the SPIRIT study). Implementation Science, 9, 113. doi:https://doi.org/10.1186/s13012-014-0113-0
- Hickey, G., McGilloway, S., Furlong, M., Leckey, Y., Bywater, T., & Donnelly, M. (2016). Understanding the implementation and effectiveness of a group-based early parenting intervention: A process evaluation protocol. BMC Health Services Research, 16, 490. doi:https://doi.org/10.1186/s12913-016-1737-3
- Hoogendoorn, A., & Sikkel, D. (1998). Response burden and panel attrition. Journal of Official Statistics, 14(2), 189–205.
- Jeon, Y-H., Clemson, L., Naismith, S., Mowszowski, L., McDonagh, N., Mackenzie, M., Dawes, C., Krein, L. & Szanton, S. (2018). Improving the social health of community-dwelling older people living with dementia through a reablement program. International Psychogeriatrics, 30(6), 915–920. doi:https://doi.org/10.1017/S1041610217001533.
- Jeon, Y-H., Krein, L., Simpson, J., Szanton, S., Clemson, L., Naismith, S., Low, L-F., Mowszowski, L., Gonski, P., Norman, R., Gitlin, L. & Brodaty, H. (2019). Feasibility and potential effects of interdisciplinary homebased reablement program (I-HARP) for people with cognitive and functional decline: a pilot trial. Aging & Mental Health. doi:https://doi.org/10.1080/13607863.2019.1642298.
- Leontjevas, R., Gerritsen, D., Koopmans, R., Smalbrugge, M., & Vernooij-Dassen, M. (2012). Process evaluation to explore internal and external validity of the “act in case of depression” care program in nursing homes. Journal of the American Medical Directors Association, 13(5), 488.e1–488.e8. doi:https://doi.org/10.1016/j.jamda.2012.03.006
- Linnan, L., & Steckler, A. (2002). Process evaluation for public health interventions and research: An overview. In A. Steckler & L. Linnan (Eds.), Process evaluation for public health interventions and research (pp. 1–23). San Francisco: Wiley
- Lives Improvement Service. (2014). Wales National audit memory clinic and memory assessment services. Cardiff: 1000 Lives Improvement Service, Public Health Wales.
- Livingston, G., Barber, J., Rapaport, P., Knapp, M., Griffin, M., King, D., … Cooper, C. (2014). Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: A single-blind, randomised, controlled trial. The Lancet. Psychiatry, 1(7), 539–548. doi:https://doi.org/10.1016/S2215-0366(14)00073-X
- Lord, K., Beresford-Dent, J., Rapaport, P., Burton, A., Leverton, M., Walters, K., … Cooper, C. (2019). Developing the new interventions for independence in dementia study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: A systematic review of theoretical models and randomised controlled trial evidence. Social Psychiatry and Psychiatric Epidemiology, 1(7), 539–548.
- Martini de Oliveira, A., Radanovic, M., de Mello, P. C. H., Buchain, P. C., Vizzotto, A. D. B., Celestino, D. L., Stella, F., Piersol, V., … Forlenza, O. (2015). Nonpharmacological interventions to reduce behavioral and psychological symptoms of dementia: A systematic review. BioMed Research International, 2015, 218980.
- Masterson-Algar, P., Burton, C., Brady, M. C., Nicoll, A., Clarke, C. E., Rick, C., … Sackley, C. (2017). The PD COMM trial: A protocol for the process evaluation of a randomised trial assessing the effectiveness of two types of SLT for people with Parkinson's disease. Trials, 18(1), 397–398. doi:https://doi.org/10.1186/s13063-017-2130-1
- Mazurek, J., Szcześniak, D., Urbańska, K., Dröes, R.-M., & Rymaszewska, J. (2019). Met and unmet care needs of older people with dementia living at home: Personal and informal carers' perspectives. Dementia (London, England), 18(6), 1963–1975. doi:https://doi.org/10.1177/1471301217733233
- McDermott, O., Orrell, M., & Ridder, H. M. (2015). The development of Music in Dementia Assessment Scales (MiDAS). Nordic Journal of Music Therapy, 24(3), 232–251. doi:https://doi.org/10.1080/08098131.2014.907333
- Molloy, D., & Standish, T. (1997). Mental status and neuropsychological assessment: A guide to the Standardised Mini-Mental State Examination. International Psychogeriatrics, 9(S1), 87–94. doi:https://doi.org/10.1017/S1041610297004754
- Moore, G. F., Audrey, S., Barker, M., Bond, L., Bonell, C., Hardeman, W., … Baird, J. (2015). Process evaluation of complex interventions: Medical Research Council guidance. BMJ, 350(6), h1258. doi:https://doi.org/10.1136/bmj.h1258
- Moore, K., Goodison, H., & Sampson, E. (2019). The role of the memory service in helping carers prepare for end of life: A mixed methods study. International Journal of Geriatric Psychiatry, 34(2), 360–368. doi:https://doi.org/10.1002/gps.5034
- Nordheim, J., Hausler, A., Yasar, S., Suhr, R., Kuhlmey, A., Rapp, M., & Gellert, P. (2019). Psychosocial intervention in couples coping with dementia led by a psychotherapist and a social worker: The DYADEM trial. Journal of Alzheimer's Disease, 68(2), 745–755. doi:https://doi.org/10.3233/JAD-180812
- Oakley, A., Strange, V., Bonell, C., Allen, E., Stephenson, J., & RIPPLE Study Team. (2006). Process evaluation in randomised controlled trials of complex interventions. BMJ, 332(7538), 413–416. doi:https://doi.org/10.1136/bmj.332.7538.413
- Orrell, M. (2012). The new generation of psychosocial interventions for dementia care. The British Journal of Psychiatry, 201(5), 342–343. doi:https://doi.org/10.1192/bjp.bp.111.107771
- Orrell, M., Aguirre, E., Spector, A., Hoare, Z., Woods, R., Streater, A., … Russell, I. (2014). Maintenance cognitive stimulation therapy for dementia: single-blind, multicentre, pragmatic randomised controlled trial. The British Journal of Psychiatry, 204(6), 454–461. doi:https://doi.org/10.1192/bjp.bp.113.137414
- Oyebode, J., & Parveen, S. (2019). Psychosocial interventions for people with dementia: An overview and commentary on recent developments. Dementia (London, England), 18(1), 8–35. doi:https://doi.org/10.1177/1471301216656096
- Patel, B., Perera, M., Pendleton, J., Richman, A., & Majumdar, B. (2014). Psychosocial interventions for dementia: From evidence to practice. Advances in Psychiatric Treatment, 20(5), 340–349. doi:https://doi.org/10.1192/apt.bp.113.011957
- Perry, C., Sellers, D., Johnson, C., Pedersen, S., Bachman, K., Parcel, G., … Cook, K. (1997). The child and adolescent trial for cardiovascular health (CATCH): Intervention, implementation and feasibility for elementary schools in the United States. Health Education & Behavior, 24(6), 716–735. doi:https://doi.org/10.1177/109019819702400607
- Public Health England. (2018). Guidance: Process evaluation. Retrieved October 4, 2019, from https://www.gov.uk/government/publications/evaluation-in-health-and-well-being-overview/process-evaluation.
- Qiu, D., Hu, M., Yu, Y., Tang, B., & Xiao, S. (2019). Acceptability of psychosocial interventions for dementia caregivers: A systematic review. BMC Psychiatry, 19(1), 1–14. doi:https://doi.org/10.1186/s12888-018-1976-4
- Regan, J., Frison, E., Collin, F., Dawes, P., Hann, M., Himmelsbach, I., … The SENSE-Cog Trial Development Team. (2019). Individualised sensory intervention to improve quality of life in people with dementia and their companions (SENSE-Cog trial): Study protocol for a randomised controlled trial. Trials, 20(1), 80. doi:https://doi.org/10.1186/s13063-018-2973-0
- van der Roest, H., Wenborn, J., Pastink, C., Dröes, R., & Orrell, M. (2017). Assistive technology for memory support in dementia. Cochrane Database of Systematic Reviews, 6, CD009627. doi:https://doi.org/10.1002/14651858.CD009627.pub2
- Voigt-Radloff, S., Graff, M., Leonhart, R., Schornstein, K., Jessen, F., Bohlken, J., … Hüll, M. (2011). A multicentre RCT on community occupational therapy in Alzheimer’s disease: 10 sessions are not better than one consultation. BMJ Open, 1(1), e000096. doi:https://doi.org/10.1136/bmjopen-2011-000096
- Welsh Assembly Government. (2011). National dementia vision for Wales: Dementia supportive communities. Cardiff: Welsh Assembly Government/Alzheimer’s Society.
- Wittenberg, R., Hu, B., Barraza-Araiza, L., & Rehill, A. (2019). Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019–2040. London: Care Policy and Evaluation Centre, LSE.
- Wright, J., Foster, A., Cooper, C., Sprange, K., Walters, S., Berry, K., … Mountain, G. (2019). Study protocol for a randomised controlled trial assessing the clinical and cost-effectiveness of the Journeying through Dementia (JtD) intervention compared to usual care. BMJ Open, 9(9), e029207 doi:https://doi.org/10.1136/bmjopen-2019-029207
- Zwingmann, I., Michalowsky, B., Esser, A., Kaczynski, A., Monsees, J., Keller, A., … Hoffmann, W. (2019). Identifying unmet needs of family dementia caregivers: Results of the baseline assessment of a cluster-randomized controlled intervention trial. Journal of Alzheimer's Disease, 67(2), 527–539. doi:https://doi.org/10.3233/JAD-180244