What research we no longer need in neurodegenerative disease at the end of life: The case of research in dementia

Palliative Medicine

Volumn 29, Issue 3, 2015, Pages 189-192

  Van Der Steen, Jenny T ^a   Goodman, Claire ^b  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b UNIVERSITY OF HERTFORDSHIRE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

DEGENERATIVE DISEASE; DEMENTIA; EVIDENCE BASED MEDICINE; HUMAN; MEDICAL RESEARCH; METHODOLOGY; PALLIATIVE THERAPY; REVIEW; TERMINAL CARE; HEALTH SERVICES RESEARCH;

DEMENTIA; EVIDENCE-BASED MEDICINE; HEALTH SERVICES RESEARCH; HUMANS; NEURODEGENERATIVE DISEASES; PALLIATIVE CARE; RESEARCH DESIGN; TERMINAL CARE;

EID: 84923515166     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216315569998     Document Type: Review

References (27)

1. EU Joint Programme - Neurodegenerative Disease Research (JPND). Palliative and end-of-life care research in neurodegenerative diseases. A report of the JPND Action group, http://www.neurodegenerationresearch.eu/initiatives/jpnd-alignment-actions/palliative-care/
2. Shega JW, Hougham GW, Stocking CB, et al. Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage. 2008 ; 35 (5). 499-507
3. Teno JM, Gozalo PL, Lee IC, et al. Does hospice improve quality of care for persons dying from dementia?. J Am Geriatr Soc. 2011 ; 59 (8). 1531-1536
4. Cohen LW, van der Steen JT, Reed D, et al. Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands. J Am Geriatr Soc. 2012 ; 60 (2). 316-322
5. van Soest-Poortvliet MC, van der Steen JT, de Vet HCW, et al. Comfort goal of care and end-of-life outcomes in dementia: a prospective study. Palliat Med. :
6. Volicer L, Rheaume Y, Brown J, et al. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA. 1986 ; 256 (16). 2210-2213
7. Lloyd-Williams M.. An audit of palliative care in dementia. Eur J Cancer Care. 1996 ; 5 (1). 53-55
8. McCarthy M, AddingtonHall J, Altmann D.. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry. 1997 ; 12: 404-409
9. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis. 2010 ; 22 (1). 37-55
10. van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimers Dis. 2014 ; 40 (3). 743-757
11. Goodman C, Evans C, Wilcock J, et al. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry. 2010 ; 25 (4). 329-337
12. 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
13. Bunn F, Goodman C, Sworn K, et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Med. 2012 ; 9 (10). e1001331
14. Dening KH, Jones L, Sampson EL.. Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011 ; 23 (10). 1535-1551
15. Mathie E, Goodman C, Crang C, et al. An uncertain future: the unchanging views of care home residents about living and dying. Palliat Med. 2012 ; 26 (5). 734-743
16. Robinson L, Dickinson C, Bamford C, et al. A qualitative study: professionals' experiences of advance care planning in dementia and palliative care, 'a good idea in theory but... '. Palliat Med. 2013 ; 27 (5). 401-408
17. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. New Engl J Med. 2009 ; 361 (16). 1529-1538
18. van der Steen JT, Onwuteaka-Philipsen BD, Knol DL, et al. Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study. BMC Med. 2013 ; 11: 105
19. 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
20. Parker G, Corden A, Heaton J.. Experiences of and influences on continuity of care for service users and carers: synthesis of evidence from a research programme. Health Soc Care Community. 2011 ; 19 (6). 576-601
21. Sampson EL, Ritchie CW, Lai R, et al. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005 ; 17 (1). 31-40
22. 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
23. Fanelli D.. Redefine misconduct as distorted reporting. Nature. 2013 ; 494 (7436). 149
24. Djulbegovic B, Kumar A, Magazin A, et al. Optimism bias leads to inconclusive results - an empirical study. J Clin Epidemiol. 2011 ; 64 (6). 583-593
25. McGauran N, Wieseler B, Kreis J, et al. Reporting bias in medical research - a narrative review. Trials. 2010 ; 11: 37
26. Petticrew M, Egan M, Thomson H, et al. Publication bias in qualitative research: what becomes of qualitative research presented at conferences?. J Epidemiol Community Health. 2008 ; 62 (6). 552-554
27. Sleeman KE, Murtagh FE.. Increasing the value of research in palliative care. Palliat Med. 2014 ; 28 (10). 1165-1166