Disclosing a diagnosis of dementia: A background to the phenomenon

Nursing Older People

Volumn 25, Issue 10, 2013, Pages 16-21

  Mitchell, Gary ^a   McCollum, Patricia ^a   Monaghan, Catherine ^a  

^a QUEEN'S UNIVERSITY BELFAST   (United Kingdom)

Author keywords

Advocacy; Alzheimer's disease; Dementia; Diagnosis; Diagnosis disclosure; Person centred care

Indexed keywords

EID: 84890073828     PISSN: 14720795     EISSN: 20478941     Source Type: Trade Journal    
DOI: 10.7748/nop2013.12.25.10.16.e497     Document Type: Article

References (53)

1. Alzheimer's Society (2012) Mapping the Dementia Gap 2012: Progress on Improving Diagnosis of Dementia 2011-2012. Alzheimer's Society, London
2. Alzheimer's Society (2013) Diagnosis Rate Data. tinyurl.com/nbjqgx5 (Last accessed: November 1 2013)
3. Ballard C, Gauthier S, Corbett A et al (2011) Alzheimer's disease. The Lancet. 377, 9770, 1019-1031
4. Bamford S-M (2010) Dementia: the challenge and importance of diagnosis in Europe. British Journal of Neuroscience Nursing. 6, 3, 110
5. Bamford C, Lamont S, Eccles M et al (2004) Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry. 19, 2, 151-169
6. Banerjee S, Willis R, Matthews D et al (2007) Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model. International Journal of Geriatric Psychiatry. 22, 8, 782-788
7. Bond J, Stave C, Sganga A et al (2005) Inequalities in dementia care across Europe: key findings of the Facing Dementia Survey. International Journal of Clinical Practice. 59, Suppl 146, 8-14
8. Bouckaert F, van den Bosch S (2005) Attitudes of family members towards disclosing diagnosis of dementia. International Psychogeriatrics. 17, Suppl 2, 216
9. Bradford A, Kunik M, Schulz P et al (2009) Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Disease and Associated Disorders. 23, 4, 306-314
10. Brooker D (2007) Person-centred Dementia Care: Making Services Better. Jessica Kingsley, London
11. Dautzenberg P, van Marum R, van Der Hammen R et al (2003) Patients and families desire a patient to be told the diagnosis of dementia: a survey by questionnaire on a Dutch memory clinic. International Journal of Geriatric Psychiatry. 18, 9, 777-779
12. Dening K, Jones L, Sampson E (2011) Advance care planning for people with dementia: a review. International Psychogeriatrics. 23, 10, 1535-1551
13. Department of Health (2001) National Service Framework for Older People. DH, London
14. Department of Health (2005) Everybody's Business. DH, London
15. Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of their Life. DH, London
16. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. DH, London
17. Department of Health (2012) Prime Minister's Challenge on Dementia. DH, London
18. Downs M, Bowers B (Eds) (2008) Excellence in Dementia Care: Research into Practice. Open University Press, Maidenhead
19. Downs M, Small N, Froggatt K (2006) Explanatory models of dementia: links to end-of-life care. International Journal of Palliative Nursing. 12, 5, 209-213
20. Elson P (2006) Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease? International Journal of Geriatric Psychiatry. 21, 5, 419-425
21. Ferri C, Prince M, Brayne C et al (2005) Global prevalence of dementia: a Delphi consensus study. The Lancet. 366, 9503, 2112-2117
22. Gaugler J, Kane R, Kane R et al (2005) Early community-based service utilization and its effects on institutionalization in dementia caregiving. The Gerontologist. 45, 2, 177-185
23. Georges J, Gove D (2007) Disclosing a diagnosis: the Alzheimer Europe view. Journal of Dementia Care. 15, 6, 28-29
24. Iliffe S, Robinson L, Brayne C et al (2009) Primary care and dementia: 1. diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry. 24, 9, 895-901
25. International Longevity Centre-UK (2011) The Future Economic, Health and Social Care Costs of Dementia: ILC-UK and the Actuarial Profession Joint Debates held in London and Edinburgh. ILC-UK, London
26. Kaduszkiewicz H, Bachmann C, Van den Bussche H (2008) Telling 'the truth' in dementia: do attitude and approach of general practitioners and specialists differ? Patient Education and Counseling. 70, 2, 220-226
27. Keady J (2008) The role of the community psychiatric nurse. Psychiatry. 7, 2, 70-72
28. Keightley J, Mitchell A (2004) What factors influence mental health professionals when deciding whether or not to share a diagnosis of dementia with the person? Aging and Mental Health. 8, 1, 13-20
29. Laakkonen M, Raivio M, Eloniemi-Sulkava U et al (2008) How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics. 34, 6, 427-430
30. Lin K, Liao Y, Wang P et al (2005) Family members favor disclosing the diagnosis of Alzheimer's disease. International Psychogeriatrics. 17, 4, 679-688
31. Marzanski M (2000) Would you like to know what is wrong with you? On telling the truth to patients with dementia. Journal of Medical Ethics. 26, 2, 108-113
32. Milne A (2010) Dementia screening and early diagnosis: the case for and against. Health, Risk and Society. 12, 1, 65-76
33. Mitchell G (2013) Applying pharmacology to practice: the case of dementia. Nurse Prescribing. 11, 4, 185-190
34. Mitchell G, McCollum P, Monaghan C (2012) The person with dementia: the personal impact of diagnosis disclosure. Abstract, 22nd Alzheimer Europe Conference, Vienna, Austria, October 5. tinyurl.com/o82qdbg (Last accessed: November 1 2013)
35. Mitchell G, McCollum P, Monaghan C (2013) The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature. British Journal of Neuroscience Nursing. 9, 5, 223-228
36. Mittelman M, Roth D, Clay O et al (2007) Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry. 15, 9, 780-789
37. Moniz-Cook E, Manthorpe J, Carr I et al (2006) Facing the future: a qualitative study of older people referred to a memory clinic prior to assessment and diagnosis. Dementia. 5, 3, 375-395
38. National Audit Office (2007) Dementia: International Comparisons. NAO, London
39. National Institute for Health and Care Excellence (2011a) Dementia: Supporting People with Dementia and Their Carers in Health and Social Care. Clinical guideline 42. NICE, London
40. National Institute for Health and Care Excellence (2011b) Donepezil, Galantamine, Rivastigmine and Memantine for the Treatment of Alzheimer's Disease. Review of NICE Technology Appraisal Guidance 111. NICE, London
41. Page S, Hope K, Bee P et al (2008) Nurses making a diagnosis of dementia - a potential change in practice? International Journal of Geriatric Psychiatry. 23, 1, 27-33
42. Pinner G, Bouman W (2003) Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics. 15, 3, 279-288
43. Pucci E, Belardinelli N, Borsetti G et al (2003) Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease. Journal of Medical Ethics. 29, 1, 51-54
44. Robinson L, Gemski A, Abley C et al (2011) The transition to dementia-individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics. 23, 7, 1026-1043
45. Scottish Government (2013) Scotland's National Dementia Strategy 2013-2016. The Scottish Government, Edinburgh
46. Shimizu M, Raicher I, Takahashi D et al (2008) Disclosure of the diagnosis of Alzheimer's disease: caregivers' opinions in a Brazilian sample. Arquivos de Neuro-psiquiatria. 66, 3B, 625-630
47. Stephan B, Brayne C (2008) Prevalence and projections of dementia. In Downs M, Bowers B (Eds) Excellence in Dementia Care: Research into Practice. Open University Press, Maidenhead
48. Teel C (2004) Rural practitioners' experiences in dementia diagnosis and treatment. Aging and Mental Health. 8, 5, 422-429
49. Turner S, Iliffe S, Downs M et al (2004) General practitioners' knowledge, confidence and attitudes in the diagnosis and management of dementia. Age and Ageing. 33, 5, 461-467
50. van Hout H, Vernooij-Dassen M, Stalman W (2007) Diagnosing dementia with confidence by GPs. Family Practice. 24, 6, 616-621
51. Vernooij-Dassen M, Moniz-Cook E, Woods R et al (2005) Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. International Journal of Geriatric Psychiatry. 20, 4, 377-386
52. Woods B, Pratt R (2005) Awareness in dementia: ethical and legal issues in relation to people with dementia. Aging and Mental Health. 9, 5, 423-429
53. World Health Organization (2012) Dementia: A Public Health Priority. WHO, Geneva