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Research Papers

Development of an assessment guide to evaluate meaningful outcomes for people living with dementia who are engaged in reablement programs

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Pages 6042-6054 | Received 01 Feb 2021, Accepted 20 Jul 2021, Published online: 08 Aug 2021

References

  • Alzheimer's Disease International. World alzheimer’s report 2018. The state of the art of dementia research: new frontiers. London: ADI; 2018.
  • Australian Institute of Health and Welfare. Australia’s health 2018. Canberra: AIHW; 2018.
  • World Health Organisation. Global action plan on the public health response to dementia 2017-2025. Geneva: WHO; 2017.
  • Wong G, Knapp M. Should we move dementia research funding from a cure to its care? Expert Rev Neurother. 2020;20(4):303–305.
  • Guideline Adaptation Committee. Clinical practice guidelines and principals of care for people with dementia. Sydney: Guideline Adaptation Committee; 2016.
  • National Institute for Health and Care Excellence (NICE). Dementia: assessment, management and support for people living with dementia and their carers. UK: National Institute for Health and Care Excellence; 2018.
  • Registered Nurses’ Association of Ontario. Delirium, dementia, and depression in older adults: Assessment and care. 2nd ed. Toronto (ON): Registered Nurses’ Association of Ontario; 2016.
  • Laver K, Dyer S, Whitehead C, et al. Interventions to delay functional decline in people with dementia: a systematic review of systematic reviews. BMJ Open. 2016;6(4):e010767.
  • Aspinal F, Glasby J, Rostgaard T, et al. New horizons: reablement - supporting older people towards independence. Age & Ageing. 2016;45:574–578.
  • Poulos CJ, Bayer A, Beaupre L, et al. A comprehensive approach to reablement in dementia. Alzheimers Dement (N Y)). 2017;3(3):450–458.
  • O'Connor CM, Gresham M, Clemson L, et al. Understanding in the australian aged care sector of reablement interventions for people living with dementia: a qualitative content analysis. BMC Health Serv Res. 2020;20(1):140.
  • O'Connor CMC, Gresham M, Poulos RG, et al. Translating reablement research for dementia practice: development of a handbook using implementation science. Disab Rehabil. 2020. DOI:10.1080/09638288.2020.1797910.
  • Poulos CJ, Gresham M, Poulos RG, et al. Supporting independence and function in people living with dementia: a handbook for service providers. 2nd ed. Sydney: HammondCare; 2019.
  • Harrison JK, Noel-Storr AH, Demeyere N, et al. Outcomes measures in a decade of dementia and mild cognitive impairment trials. Alzheimers Res Ther. 2016;8(1):48.
  • Webster L, Groskreutz D, Grinbergs-Saull A, et al. Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations. Health Technol Assess. 2017;21(26):1–192.
  • Clare L. Rehabilitation for people living with dementia: a practical framework of positive support. PLoS Med. 2017;14(3):e1002245.
  • World Health Organisation (WHO). World report on ageing and health. Luxemborg: World Health Organisation; 2015.
  • World Health Organisation (WHO). Towards a common language for functioning, disability and health: ICF the international classification of functioning, disability and health. Geneva: WHO; 2002.
  • Dutzi I, Schwenk M, Kirchner M, et al. "What would you like to achieve?" Goal-Setting in Patients with Dementia in Geriatric Rehabilitation?”. BMC Geriatr. 2019;19(1):280.
  • Spector A, Orrell M. Using a biopsychosocial model of dementia as a tool to guide clinical practice. Int Psychogeriatr. 2010;22(6):957–965.
  • Kiresuk TJ, Sherman RE. Goal attainment scaling: a general method for evaluating comprehensive community mental health programs. Community Ment Health J. 1968;4(6):443–453.
  • Hurn J, Kneebone I, Cropley M. Goal setting as an outcome measure: a systematic review. Clin Rehabil. 2006;20(9):756–772.
  • Law M, Baptiste S, Carswell A, et al. Canadian occupational performance measure. 4th ed. Ottawa: CAOT Publications ACE; 2005.
  • Clare L, Hindle JV, Jones IR, et al. The AgeWell study of behavior change to promote health and wellbeing in later life: study protocol for a randomized controlled trial. Trials. 2012;13:115.
  • Clare L, Kudlicka A, Oyebode JR, et al. Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: the GREAT RCT. Health Technol Assess. 2019;23(10):1–242.
  • Colquhoun H, Letts L, Law M, et al. Feasibility of the canadian occupational performance measure for routine use. British Journal of Occupational Therapy. 2010;73(2):48–54.
  • Enemark Larsen A, Carlsson G. Utility of the canadian occupational performance measure as an admission and outcome measure in interdisciplinary community-based geriatric rehabilitation. Scandinavian Journal of Occupational Therapy. 2012;19(2):204–213.
  • Bouwens SFM, van Heugten CM, Verhey FRJ. Review of goal attainment scaling as a useful outcome measure in psychogeriatric patients with cognitive disorders. Dement Geriatr Cogn Disord. 2008;26(6):528–540.
  • Martyr A, Clare L. Awareness of functional ability in people with early-stage dementia. Int J Geriatr Psychiatry. 2018;33(1):31–38.
  • Bogardus ST, Bradley EH, Tinetti ME. A taxonomy for goal setting in the care of persons with dementia. J Gen Intern Med. 1998;13(10):675–680.
  • Jennings LA, Ramirez KD, Hays RD, et al. Personalized goal attainment in dementia care: measuring what persons with dementia and their caregivers want. J Am Geriatr Soc. 2018;66(11):2120–2127.
  • Rockwood K. An individualized approach to tracking and treating Alzheimer's disease. Clin Pharmacol Ther. 2010;88(4):446–449.
  • Clare L, Evans S, Parkinson C, et al. Goal-Setting in cognitive rehabilitation for people with Early-Stage alzheimer's disease. Clinical Gerontologist. 2011;34(3):220–236.
  • Clare L, Kudlicka A, Oyebode JR, et al. Individual goal-oriented cognitive rehabilitation to improve everyday functioning for people with early-stage dementia: a multicentre randomised controlled trial (the GREAT trial). ).Int J Geriatr Psychiatry. 2019;34(5):709–721.
  • Stolee P, Awad M, Byrne K, Day Hospital Goal Attainment Scaling Interest Group of the Regional Geriatric Programs of Ontario, et al. A multi-site study of the feasibility and clinical utility of goal attainment scaling in geriatric day hospitals. Disabil Rehabil. 2012;34(20):1716–1726.
  • Turner-Stokes L. Goal attainment scaling (GAS) in rehabilitation: a practical guide. Clin Rehabil. 2009;23(4):362–370.
  • Yip AM, Gorman MC, Stadnyk K, et al. A standardized menu for goal attainment scaling in the care of frail elders. Gerontologist. 1998;38(6):735–742.
  • Gitlin LN. Introducing a new intervention: an overview of research phases and common challenges. Am J Occup Ther. 2013;67(2):177–184.
  • Peters DH, Adam T, Alonge O, et al. Implementation research: what it is and how to do it. BMJ. 2013;347:f6753.
  • Krueger RA, Casey MA. Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks (CA): Sage Publications Inc; 2000.
  • Cucinotta D, Vanelli M. WHO declares COVID-19 a pandemic. Acta Biomed. 2020;91(1):157–160.
  • Harper M, Cole P. Member checking: can benefits be gained similar to group therapy? Qualitative Report. 2012;17:510–517.
  • Carcary M. The research audit trail: enhancing trustworthiness in qualitative inquiry. Electronic Journal of Business Research Methods. 2009;7:11–24.
  • Downe-Wamboldt B. Content analysis: method, applications, and issues. Health Care Women Int. 1992;13(3):313–321.
  • Thomas DR. A general inductive approach for analysing qualitative evaluation data. American Journal of Evaluation. 2006;27(2):237–246.
  • Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405.
  • Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112.
  • Weber RP. Basic content analysis. Beverly Hills (CA): Sage; 1990.
  • Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288.
  • O’Connor CMC, Poulos CJ. Setting goals and evaluating meaningful outcomes for people living with dementia who are participating in reablement programs: practitioner guide. Sydney: HammondCare; 2021.
  • O'Connor CMC, Poulos CJ. Setting goals and evaluating meaningful outcomes for people living with dementia who are participating in reablement programs: client book. Sydney: HammondCare; 2021.
  • Plant SE, Tyson SF, Kirk S, et al. What are the barriers and facilitators to goal-setting during rehabilitation for stroke and other acquired brain injuries? A systematic review and Meta-synthesis. Clin Rehabil. 2016;30(9):921–930.
  • Muò R, Schindler A, Vernero I, et al. Alzheimer's disease-associated disability: an ICF approach. Disabil Rehabil. 2005;27(23):1405–1413.
  • Turner-Stokes L, Williams H, Johnson J. Goal attainment scaling: does it provide added value as a person-centred measure for evaluation of outcome in neurorehabillitation following acquired brain injury? J Rehabil Med. 2009;41(7):528–535.
  • Bovend'Eerdt TJH, Botell RE, Wade DT. Writing SMART rehabilitation goals and achieving goal attainment scaling: a practical guide. Clin Rehabil. 2009;23(4):352–361.
  • Turner-Stokes L. Goal attainment scaling (GAS) in rehabilitation: a practical guide. London: King's College London; 2017.
  • Genoe MR, Dupuis SL. The role of leisure within the dementia context. Dementia (London)). 2014;13(1):33–58.
  • O'Connor CMC, Wesson JB, Clemson L. Active and engaged: maintaining leisure activities in dementia. In: Low LF, Laver K, editors. Dementia rehabilitation: Evidence-based interventions and clinical recommendations. London, UK: Elsevier; 2020. p. 118–290.
  • Trigg R, Watts S, Jones R, et al. Predictors of quality of life ratings from persons with dementia: the role of insight. Int J Geriatr Psychiatry. 2011;26(1):83–91.,.
  • Marková IS, Clare L, Wang M, et al. Awareness in dementia: conceptual issues. Aging Ment Health. 2005;9(5):386–393.
  • Sinclair C, Field S, Williams K, et al. Supporting decision-making: a guide for people living with dementia, family members and carers. Sydney: Cognitive Decline Partnership Centre; 2018.
  • Hicks E, Sims-Gould J, Byrne K, et al. She was a little bit unrealistic”: choice in healthcare decision making for older people. Journal of Aging Studies. 2012;26(2):140–148.
  • Jelles F, Van Bennekom CAM, Lankhorst GJ, et al. Inter- and intra-rater agreement of the rehabilitation activities profile. J Clin Epidemiol. 1995;48(3):407–416.
  • Teri L, Logsdon RG. Identifying pleasant activities for alzheimer's disease patients: the pleasant events Schedule-AD. Gerontologist. 1991;31(1):124–127.
  • Tennant A. Goal attainment scaling: current methodological challenges. Disabil Rehabil. 2007;29(20-21):1583–1588.
  • Wade D. Rehabilitation - a new approach. Part three: the implications of the theories. Clin Rehabil. 2016;30(1):3–10.
  • Stolee P, Zaza C, Pedlar A, et al. Clinical experience with goal attainment scaling in geriatric care. J Aging Health. 1999;11(1):96–124.
  • Turner-Stokes L, Rose H, Lakra C, et al. Goal-setting and attainment in prolonged disorders of consciousness – development of a structured approach. Brain Injury. 2020;34(1):78–88.
  • McGarrigle L, Rockwood K. The responsiveness of goal attainment scaling using just one goal in controlled clinical trials: an exploratory analysis. Journal of Patient-Reported Outcomes. 2020;4:35.
  • Damschroder LJ, Aron DC, Keith RE, et al. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4:50.
  • Foley T, Sheehan C, Jennings AA, et al. A qualitative study of the dementia-care experiences and educational needs of physiotherapists in the republic of Ireland. Physiotherapy. 2020;107:267–274.
  • Graham I, Logan J, Harrison M, et al. Lost in knowledge translation: time for a map? J Contin Educ Health Prof. 2006;26(1):13–24.
  • Harvey G, Kitson A. PARIHS revisited: from heuristic to integrated framework for the successful implementation of knowledge into practice. Implement Sci. 2016;11:33.

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