The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia

References

• Department of Health. Prime minister’s challenge on dementia 2020: implementation plan; 2016 Available from Department of Health and Social Care website: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/507981/PM_Dementia-main_acc.pdf. Accessed 225, 2019.
   Google Scholar
• NHS England. Well pathway for dementia; 2016 Available from: https://www.england.nhs.uk/mental-health/dementia/. Accessed 225, 2019
   Google Scholar
• Burgener SC, Buettner LL, Beattie E, Rose KM. Effectiveness of community-based, nonpharmacological interventions for early-stage dementia: conclusions and recommendations. J Gerontol Nurs. 2009;35(3):50–57.
   PubMed Web of Science ®Google Scholar
• Clarke CL, Keyes SE, Wilkinson H, et al. Healthbridge: the National Evaluation of Peer Support Networks and Dementia Advisers in implementation of the National Dementia Strategy for England; 2013 Available from Department of Health and Social Care website: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/246406/Demonstrator_Sites_Evaluation_-_Final_Report_Master.pdf. Accessed 226, 2019.
   Google Scholar
• Reifel BV, Larson E. Excess disability in dementia of the Alzheimer’s type In: Light E, Lebowitz BD, editors. Alzheimer’s Disease Treatment and Family Stress. New York: Hemisphere; 1990:363–382.
   Google Scholar
• Sterin J. Essay on a word: a lived experience of Alzheimer’s Disease. Dementia. 2002;1:7–10. doi:10.1177/147130120200100103
   Google Scholar
• Langdon S, Eagle A, Warner J. Making sense of dementia in the social world: a qualitative study. Soc Sci Med. 2007;34(4):989–1000. doi:10.1016/j.socscimed.2006.10.029
   Web of Science ®Google Scholar
• Birt L, Poland F, Csipke E, Charlesworth G. Shifting dementia discourses from deficit to active citizenship. Soc Health Ill. 2017;39(2):199–211. doi:10.1111/1467-9566.12530
   PubMed Web of Science ®Google Scholar
• Katsuno T. Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing Soc. 2005;25:197–214. doi:10.1017/S0144686X0400279X
   Web of Science ®Google Scholar
• MacRae H. Self and other: the importance of social interaction and social relationships in shaping the experience of early-stage Alzheimer’s disease. J Aging Stud. 2011;25:445–456. doi:10.1016/j.jaging.2011.06.001
   Web of Science ®Google Scholar
• Csipke E, Yates L, Moniz-Cook E, et al. Promoting independence in dementia (PRIDE): protocol for a feasibility trial of the PRIDE intervention for living well with mild dementia. Int J Clin Trials. 2018;5(4):177–185. doi:10.18203/2349-3259.ijct20184399
   Google Scholar
• Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new medical research council guidance. Brit Med J. 2008;337:a1655. doi:10.1136/bmj.a165518824488
   PubMed Web of Science ®Google Scholar
• Steptoe A, Breeze E, Banks J, Nazroo J. Cohort profile: the english longitudinal study of ageing. Int J Epid. 2013;42:1640–1648. doi:10.1093/ije/dys168
   PubMed Web of Science ®Google Scholar
• Birt L, Poland F, Charlesworth G, Leung P, Higgs P. Relational experiences of people seeking help and assessment for subjective cognitive concern and memory loss. Aging Ment Health. 2019;1–9. doi:10.1080/13607863.2019.1592111
   Web of Science ®Google Scholar
• INVOLVE. Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research. Eastleigh: INVOLVE; 2012.
   Google Scholar
• Department for Constitutional Affairs. The mental capacity act; 2005 http://www.opsi.gov.uk/acts/acts2005/20050009.htm. Accessed 225, 2019.
   Google Scholar
• Perepletchikova F, Treat TA, Kazdin AE. Treatment integrity in psychotherapy research: analysis of the studies and examination of the associated factors. J Consult Clin Psych. 2007;75(6):829–841. doi:10.1037/0022-006X.75.6.829
   PubMed Web of Science ®Google Scholar
• Toms GR, Quinn C, Anderson DE, Clare L. Help yourself: perspectives on self-management from people with dementia and their caregivers. Qual Health Res. 2015;25(1):87–98. doi:10.1177/104973231454960425192761
   PubMed Web of Science ®Google Scholar
• Mountain GA, Craig CL. What should be in a self-management programme for people with early dementia? Aging Ment Health. 2012;16:576–583. doi:10.1080/13607863.2011.65143022360274
   PubMed Web of Science ®Google Scholar
• Department of Health. The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. London: Department of Health; 2001.
   Google Scholar
• Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Edu Couns. 2002;48(2):177–187. doi:10.1016/S0738-3991(02)00032-0
   PubMed Web of Science ®Google Scholar
• de Silva D. Helping People Help Themselves: A Review of the Evidence considering whether It Is Worthwhile to Support Self-management. London: Health Foundation; 2011.
   Google Scholar
• Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. J Amer Med Assoc. 2002;288(19):2469–2475. doi:10.1001/jama.288.19.2469
   PubMed Web of Science ®Google Scholar
• Lorig KR, Holman R. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7. doi:10.1207/S15324796ABM2601_0112867348
   PubMed Web of Science ®Google Scholar
• Mountain GA. Self-management for people with early dementia: an exploration of concepts and supporting evidence. Dementia. 2006;5(3):429–446. doi:10.1177/1471301206067117
   Google Scholar
• Quinn C, Toms G, Anderson D, Clare L. A review of self-management interventions for people with dementia and mild cognitive impairment. J Appl Gerontol. 2016;35(11):1154–1188. doi:10.1177/073346481456685225608870
   PubMed Web of Science ®Google Scholar
• Barbas NR, Wilde EA. Competency issues in dementia: medical decision making, driving, and independent living. J Geriatr Psych Neuro. 2001;14(4):199–212. doi:10.1177/089198870101400405
   PubMed Web of Science ®Google Scholar
• Livingston JD, Boyd E. Correlates and consequences of internalized stigma for people living with mental illness: a systematic review and meta-analysis. Soc Sci Med. 2010;71(12):2150–2161. doi:10.1016/j.socscimed.2010.09.03021051128
   PubMed Web of Science ®Google Scholar
• MacQuarrie R. Experiences in early stage Alzheimer’s disease: understanding the paradox of acceptance and denial. Aging Ment Health. 2005;9(5):430–441. doi:10.1080/1360786050014285316024402
   PubMed Web of Science ®Google Scholar
• Samsi K, Manthorpe J. Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. Inter Psychoger. 2013;25(6):949–961. doi:10.1017/S1041610213000306
   PubMed Web of Science ®Google Scholar
• Clare L, Wu Y-T, Teale JC, et al. Potentially modifiable lifestyle factors, cognitive reserve, and cognitive function in later life: a cross-sectional study. PLoS Med. 2017;14(3):e1002259. doi:10.1371/journal.pmed.100223028323829
   PubMed Web of Science ®Google Scholar
• Baltes PB, Baltes MM. Psychological perspectives on successful aging: the model of selective optimization with compensation In: Baltes PB, Baltes MM, editors. Successful Aging: Perspectives from the Behavioral Sciences. New York: Cambridge University Press; 1990:1–34.
   Google Scholar
• Vassilev I, Rogers A, Blickem C, et al. Social networks, the ‘work’ and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One. 2013;8(4):e59723. doi:10.1371/journal.pone.005972323565162
   PubMed Web of Science ®Google Scholar
• Cornwell E, Waite L. Social network resources and management of hypertension. J Health Soc Behav. 2012;53(2):215–231. doi:10.1177/002214651244683222660826
   PubMed Web of Science ®Google Scholar
• Bandura A. Social Learning Theory. Englewood Cliffs, NJ: Prentice Hall; 1977.
   Google Scholar
• Robinson L, Clare L, Evans K. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging Ment Health. 2005;9(4):337–347. doi:10.1080/1360786050011455516019290
   PubMed Web of Science ®Google Scholar
• Beard RL, Knauss J, Moyer D. Managing disability and enjoying life: how we reframe dementia through personal narratives. J Aging Stud. 2009;23(4):227–235. doi:10.1016/j.jaging.2008.01.002
   Web of Science ®Google Scholar
• Bouchard E, Bannister K, Anas A. The dementia narrative: writing to reclaim social identity. J Aging Stud. 2009;23(3):145–157. doi:10.1016/j.jaging.2007.12.018
   Web of Science ®Google Scholar
• Menne HL, Kinney M, Morhardt DJ. ‘Trying to continue to do as much as they can do’ Theoretical insights regarding continuity and meaning making in the face of dementia. Dementia. 2002;1(3):367–382. doi:10.1177/147130120200100308
   Google Scholar
• Bandura A. The explanatory and predictive scope of self-efficacy theory. J Soc Clin Psychol. 1986;4(3):359–373. doi:10.1521/jscp.1986.4.3.359
   Web of Science ®Google Scholar
• Soni M, Orrell M, Bandelow S, et al. Physical activity pre-and post-dementia: english longitudinal study of ageing. Aging Ment Health. 2019;23(1):1–7. doi:10.1080/13607863.2017.139657529148830
   PubMed Web of Science ®Google Scholar
• Rafnsson SB, Orrell M, d’Orsi E, et al. Loneliness, social integration, and incident dementia over 6 years: prospective findings from the english longitudinal study of ageing. J Gerontol B Psychol Sci Soc Sci J Gerontol. 2017:gbx087 Series BEpub 2017 Jun 27.
   Google Scholar
• Khondoker M, Rafnsson SB, Morris S, Orrell M, Steptoe A. Positive and negative experiences of social support and risk of dementia in later life: an investigation using the english longitudinal study of ageing. J Alzeimers Dis. 2017;58(1):99–108. doi:10.3233/JAD-161160
   PubMed Web of Science ®Google Scholar
• Elliott-King J. Factors affecting assessment, uptake and adherence to Physical activities in people with Dementia: An Inclusive Approach [PhD doctoral thesis]. National Centre for Sports and Exercise Medicine, Loughborough University, Loughborough, UK; 2019.
   Google Scholar
• d’Orsi E, Xavier AJ, Rafnsson SB, et al. Is use of the internet in midlife associated with lower dementia incidence? Results from the english longitudinal study of ageing. Aging Ment Health. 2017;22(11):1525–1533. doi:10.1080/13607863.2017.136084028795579
   PubMed Web of Science ®Google Scholar
• García-Casal JA, Loizeau A, Csipke E, Franco-Martín M, Perea-Bartolomé MV, Orrell M. Computer-based cognitive interventions for people living with dementia: a systematic literature review and meta-analysis. Aging Ment Health. 2017;21(5):454–467. doi:10.1080/13607863.2015.113267726806365
   PubMed Web of Science ®Google Scholar
• Wenger GC. A network typology: from theory to practice. J Aging Stud. 1991;5(2):147–162. doi:10.1016/0890-4065(91)90003-B
   Web of Science ®Google Scholar
• National Development Team for Inclusion. Circles of support for people with dementia: summary evaluation report; 2014 Available from: https://www.ndti.org.uk/resources/articles/journal-of-dementia-care-article. Accessed 225, 2019.
   Google Scholar
• The Dementia Engagement and Empowerment Project. Dementia words matter: guidelines on language about dementia; 2014 Available from DEEP website: http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf. Accessed 725, 2019.
   Google Scholar
• The Dementia Engagement and Empowerment Project. Writing dementia-friendly information; 2013 Available from DEEP website: http://dementiavoices.org.uk/wp-content/uploads/2013/11/DEEP-Guide-Writing-dementia-friendly-information.pdf. Accessed 225, 2019.
   Google Scholar
• Yates L, Orrell M, Leung P, et al. Making A Difference I3: Individual Cognitive Stimulation Therapy: A Manual for Carers. London: Hawker; 2014.
   Google Scholar
• Kitwood T. The experience of dementia. Aging Ment Health, 1 (1),13-22.Langdon, S., Eagle, A. and Warner, J. (2007) Making sense of dementia in the social world: A qualitative study. Soc Sci Med. 1997;64:989–1000.
   Google Scholar
• Michie S, Richardson M, Johnston M, et al. The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med. 2013;46(1):81–95. doi:10.1007/s12160-013-9486-623512568
   PubMed Web of Science ®Google Scholar
• Walton HJ. Evaluating the implementation of social interventions to improve independence in dementia [Doctoral Thesis (Ph.D)]; 2018 Available from UCL Discovery: http://discovery.ucl.ac.uk/10064480/. Accessed 725, 2019.
   Google Scholar
• Watts S, Cheston R, Moniz-Cook E, et al. Post-diagnostic Support for People Living with Dementia. Clinical Psychology in the Early Stage Dementia Care Pathway. London: British Psychological Society; 2013.
   Google Scholar
• Kelly F, Innes A. Facilitating independence: the benefits of a post-diagnostic support project for people with dementia. Dementia. 2016;15(2):162–180. doi:10.1177/147130121452078024535818
   PubMedGoogle Scholar
• National Audit Office. Improving Services and Support for People with Dementia. London, UK: National Audit Office; 2007.
   Google Scholar
• Manthorpe J, Samsi K, Campbell S, et al. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. Br J Gen Pract. 2013;63(606):e69–e75. doi:10.3399/bjgp13X66080523336476
   PubMed Web of Science ®Google Scholar
• Webb TL, Joseph J, Yardley L, Michie S. Using the internet to promote health behavior change: a systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. J Med Internet Res. 2010;12(1). doi:10.2196/jmir.1587
   Web of Science ®Google Scholar
• Bellg AJ, Borrelli B, Resnick B, et al. Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH behavior change consortium. Health Psychol. 2004;23(5):443. doi:10.1037/0278-6133.23.5.44315367063
   PubMed Web of Science ®Google Scholar
• Wilson GT. Manual-based treatments: the clinical application of research findings. Behav Res Ther. 1996;34:295–315. doi:10.1016/0005-7967(95)00084-48871362
   PubMed Web of Science ®Google Scholar
• Connor‐Smith JK, Weisz JR. Applying treatment outcome research in clinical practice: techniques for adapting interventions to the real world. Child Adol Ment H-UK. 2003;8(1):3–10. doi:10.1111/1475-3588.00038
   Google Scholar
• Oliver SR, Rees RW, Clarke‐Jones L, et al. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect. 2008;11(1):72–84. doi:10.1111/j.1369-7625.2007.00476.x18275404
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen M, Moniz-Cook E. Raising the standard of applied dementia care research: addressing the implementation error. Aging Ment Health. 2014;18(7):809–814. doi:10.1080/13607863.2014.89997724815025
   PubMed Web of Science ®Google Scholar
• McKeown J, Clarke A, Ingleton C, et al. The use of life story work with people with dementia to enhance person‐centred care. Int J Older People Nurs. 2010;5(2):148–158. doi:10.1111/j.1748-3743.2010.00219.x20925716
   PubMedGoogle Scholar
• Tait L, Lester H. Encouraging user involvement in mental health services. BJ Psych Advance. 2005;11(3):168–175.
   Google Scholar