Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

Louise Jones, Bridget Candy, Sarah Davis, Margaret Elliott, Anna Gola, Jane Harrington, Nuriye Kupeli, Kathryn Lord, Kirsten Moore, Sharon Scott, Victoria Vickerstaff, Rumana Z Omar, Michael King, Gerard Leavey, Irwin Nazareth, Elizabeth L Sampson, Louise Jones, Bridget Candy, Sarah Davis, Margaret Elliott, Anna Gola, Jane Harrington, Nuriye Kupeli, Kathryn Lord, Kirsten Moore, Sharon Scott, Victoria Vickerstaff, Rumana Z Omar, Michael King, Gerard Leavey, Irwin Nazareth, Elizabeth L Sampson

Abstract

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia.

Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them.

Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual.

Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process.

Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers.

Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

Keywords: Advanced dementia; complex interventions; end-of-life care; integrated care.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

© The Author(s) 2015.

Figures

Figure 1.
Figure 1.
Process for the development of the COMPASSION model of care for people with advanced dementia at the end of life and those close to them.

References

    1. Alzheimer’s Society. Dementia 2014: opportunity for change. London: Alzheimer’s Society, 2014, (accessed 3 March 2015).
    1. Rait G, Walters K, Bottomley C, et al. Survival of people with clinical diagnosis of dementia in primary care: cohort study. BMJ 2010; 341: c3584.
    1. Brayne C, McCracken C, Matthews FE. Cohort profile: Medical Research Council Cognitive Function and Ageing Study (CFAS). Int J Epidemiol 2006; 35(5): 1140–1145.
    1. Addington-Hall J, Altmann D, McCarthy M. Variations by age in symptoms and dependency levels experienced by people in the last year of life, as reported by surviving family, friends and officials. Age Ageing 1998; 27(2): 129–136.
    1. Houttekier D, Vandervoort A, Van den Block L, et al. Hospitalizations of nursing home residents with dementia in the last month of life: results from a nationwide survey. Palliat Med 2014; 28(9): 1110–1117.
    1. Klapwijk MS, Caljouw MA, van Soest-Poortvliet MC, et al. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatr 2014; 14: 99.
    1. Perrar KM, Schmidt H, Eisenmann Y, et al. Needs of people with severe dementia at the end-of-life: a systematic review. J Alzheimers Dis 2015; 43(2): 397–413.
    1. Mitchell SL, Miller SC, Teno JM, et al. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA 2010; 304(17): 1929–1935.
    1. Kitwood T, Bredin K. Towards a theory of dementia care: personhood and well-being. Ageing Soc 1992; 12: 269–287.
    1. Kitwood T. Toward a theory of dementia care: ethics and interaction. J Clin Ethics 1998; 9(1): 23–34.
    1. National Institute for Health and Care Excellence. Quality standard for dementia [NICE QS1], (2010, accessed 3 March 2015).
    1. National Institute for Health and Care Excellence. Quality standard for end of life care for adults [NICE QS13], (2011. accessed 3 March 2015).
    1. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: Department of Health, 2008.
    1. Department of Health. Improving care for people with dementia. London: Department of Health, 2013.
    1. Ngo J, Holroyd-Leduc JM. Systematic review of recent dementia practice guidelines. Age Ageing 2015; 44(1): 25–33.
    1. van der Steen JT, Radbruch L, Hertogh CM, et al. ; European Association for Palliative Care (EAPC). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014; 28(3): 197–209. DOI: 10.1177/0269216313493685.
    1. Gold Standards Framework. The gold standards framework. NHS End of Life Care Programme, (2008, accessed 2 March 2015).
    1. Kinley J, Stone L, Dewey M, et al. The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial. Palliat Med 2014; 28(9): 1099–1109.
    1. Booth M, Nash S, Banks C, et al. Three approaches to delivering end-of-life education to care homes in a region of south east England. Int J Palliat Nurs 2014; 20(1): 27–35.
    1. Kinley J, Hockley J, Stone L, et al. The provision of care for residents dying in UK nursing care homes. Age Ageing 2014; 43(3): 375–379.
    1. Goodman C, Drennan V, Scheibl F, et al. Models of inter professional working for older people living at home: a survey and review of the local strategies of English health and social care statutory organisations. BMC Health Serv Res 2011; 11: 337.
    1. Davies SL, Goodman C, Bunn F, et al. A systematic review of integrated working between care homes and health care services. BMC Health Serv Res 2011; 11: 320.
    1. Gage H, Dickinson A, Victor C, et al. Integrated working between residential care homes and primary care: a survey of care homes in England. BMC Geriatr 2012; 12: 71.
    1. Jones L, Harrington J, Scott S, et al. CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: improving Our Knowledge): protocol for a mixed methods study. BMJ Open 2012; 2: e002265.
    1. Fitch K, Bernstein SJ, Aguilar MS, et al. The RAND/UCLA appropriateness method user’s manual. Santa Monica, CA: RAND Corporation, MR-1269-DG-XII/RE, (accessed 2 September 2015).
    1. Van der Steen JT, Goodman C. What research we no longer need in neurodegenerative disease at the end of life: the case of research in dementia. Palliat Med 2015; 29(3): 189–192.
    1. Pawson R, Tilley N. Realistic evaluation. London: SAGE, 1997.
    1. Michie S, Abraham C. Interventions to change health behaviours: evidence-based or evidence-inspired? Psychol Health 2004; 19(1): 29–49.
    1. MRC framework for the development of complex interventions. (2008, accessed 3 March 2015).
    1. Higginson IJ, Evans CJ, Grande G, et al. ; MORECare. Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med 2013; 11: 111.
    1. Grol RPTM, Bosch MC, Hulscher MEJL, et al. Planning and studying improvement in patient care: the use of theoretical perspectives. Millbank Q 2007; 85(1): 93–138.
    1. Ferlie EB, Shortell SM. Improving the quality of health care in the United Kingdom and the United States: a framework for change. Milbank Q 2001; 79(2): 281–315.
    1. Greenhalgh T, Robert G, Macfarlane F, et al. Diffusion of innovations in service organizations: systematic review and recommendations. Milbank Q 2004; 82(4): 581–629.
    1. Elliott M, Harrington J, Moore K, et al. A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention. BMJ Open 2014; 4: e005661.
    1. Rossi PH, Lipsey MW, Freeman HE. Evaluation: a systematic approach. 7th ed. Thousand Oaks, CA: SAGE, 2004.
    1. French SD, Green SE, O’Connor DA, et al. Developing theory-informed behaviour change interventions to implement evidence into practice: a systematic approach using the Theoretical Domains Framework. Implement Sci 2012; 7: 38.
    1. Eccles M, Grimshaw J, Walker A, et al. Changing the behavior of healthcare professionals: the use of theory in promoting the uptake of research findings. J Clin Epidemiol 2005; 58(2): 107–112.
    1. Chambers DA, Glasgow RE, Stange KC. The dynamic sustainability framework: addressing the paradox of sustainment amid ongoing change. Implement Sci 2013; 8: 117.
    1. Lloyd-Williams M, Abba K, Crowther J. Supportive and palliative care for patients with chronic mental illness including dementia. Curr Opin Support Palliat Care 2014; 8(3): 303–307.
    1. Wolfs CA, Dirksen CD, Severens JL, et al. The costs and benefits of an integrated approach to dementia. Tijdschr Psychiatr 2011; 53(9): 657–665. (Dutch).
    1. Nair R, Aggarwal R, Khanna D. Methods of formal consensus in classification/diagnostic criteria and guideline development. Semin Arthritis Rheum 2011; 41(2): 95–105.
    1. Brazil K, Ozer E, Cloutier MM, et al. From theory to practice: improving the impact of health services research. BMC Health Serv Res 2005; 5: 1.
    1. Candy B, King M, Jones L, et al. Using qualitative synthesis to explore heterogeneity of complex interventions. BMC Med Res Methodol 2011; 11: 124.
    1. Candy B, King M, Jones L, et al. Using qualitative evidence on patients’ views to help understand variation in effectiveness of complex interventions: a qualitative comparative analysis. Trials 2013; 14: 179.

Source: PubMed

Patrocinadores e Colaboradores

Condições médicas

Intervenções de drogas

3
Se inscrever