The experience of research participation and the value of diagnosis in dementia: Implications for practice

References

• Bahro, M., Silber, E. & Sunderland, T. (1995). How do patients with Alzheimer's disease cope with their illness? A clinical experience report. Journal ofthe American Geriatrics Society, 43, 41–46.
   PubMed Web of Science ®Google Scholar
• Barnes, R.C. (1997). Telling the diagnosis to patients with Alzheimer's disease. British Medical Jour-nal, 314,1, 375–376.
   Google Scholar
• Black, J. (1995). Telling the truth: Should persons with Alzheimer's disease be told their diagnosis? Alzhe-imer's Disease International Global Perspective, 6, 10.
   Google Scholar
• Burnard, P. (1991). A method of analysing interview transcripts in qualitative research. Nurse Educa-tion Today, 11, 461–466.
   PubMedGoogle Scholar
• Cayton, H. (1995). Diagnostic testing: Who wants to know? Journal of Dementia Care, Jan, 12–13.
   Google Scholar
• Chalmers, I. (1995). What do I want from health research and researchers when I am a patient? British Medical Journal, 310, 1315–1318.
   Google Scholar
• Drickamer, M.A. & Lachs, M.S. (1992). Should pa-tients with Alzheimer's disease be told their diag-nosis? New England Journal of Medicine, 326, 947–951.
   Google Scholar
• Ellis, D.A., Hopkin, J. M., Leitch, A.G. & Crofton, Sir John. (1979). 'Doctors' orders': controlled trial of supplementary, written information for patients. British Medical Journal, 17, 456.
   Google Scholar
• Erde, E.L., Nadal, E.C. & Schol, T.O. (1988). On truth telling and the diagnosis of Alzheimer's disease. Journal of Family Practice, 26, 401–406.
   PubMed Web of Science ®Google Scholar
• Faulkner, A. (1993). Helping relatives to cope with a diagnosis of cancer in a loved one. Journal of Cancer Care, 2, 132–136.
   Google Scholar
• Fitch, M.I. (1994). How much should I say to whom? Journal of Palliative Care, 10, 90–100
   Google Scholar
• Gilliard, J. & Gwilliam C. (1996). Sharing the diagno-sis: A survey of memory disorders clinics, their policies of informing people with dementia and their families, and the support they offer. Interna-tional Journal of Geriatric Psychiatry, 11, 1001–1003.
   Google Scholar
• Hindley, N.J., Jobst, K.A., King, E., Barnetson, L., Smith, A. & Haigh, A-M. (1995). High acceptabil-ity and low morbidity of diagnostic lumbar punc-ture in elderly subjects of mixed cognitive status. Acta Neurologica Scandinavica, 91, 405–411.
   Google Scholar
• Illife, S. (1994) Why GPs have a bad reputation. Jour-nal of Dementia Care, 2, 24–25.
   Google Scholar
• Jobst, K.A., Hindley, N.J., King, E. & Smith, A.D. (1994). The diagnosis of Alzheimer's disease: A question of image? Journal of Clinical Psychiatry, 55, 22–31.
   PubMed Web of Science ®Google Scholar
• Jobst, K.A., Barnetson, L.P.D., & Shepstone, B.J., on behalf of OPTIMA. (1997). Accurate prediction of histologically confirmed Alzheimer's disease and the differential diagnosis of dementia: The use of NINCDS-ADRD A and DSM-III R- Criteria, SPECT, X-Ray CT, and ApoE4 in medial temporal lobe dementias. International Psychogeriatrics, 9, Suppl. 1,191–222.
   PubMedGoogle Scholar
• Keady, J. & Nolan, M. (1995). IM MEL 2: Working to augment coping responses in early dementia. Brit-ish Journal of Nursing, 4, 377–380.
   PubMedGoogle Scholar
• Kellett, J. (1994). Why be a guinea pig? Journal of Dementia Care, Sept/Oct, 29.
   Google Scholar
• King, E.M-F.O., Smith, A. & Jobst, K.A. (1993). Autopsy: Consent, completion and communica-tion in Alzheimer's disease research. Age and Ageing, 22, 209–214.
   Google Scholar
• Kitwood, T. (1997). The experience of dementia. Ag-ing and Mental Health, 1,13–22.
   Web of Science ®Google Scholar
• Maguire, C.P., Kirby, M., Coen, R., Coakley, D., Lawlor, B.A. & 0' Neill, D. (1996). Family mem-bers' attitudes towardtelling thepatient with Alzhe-imer's disease their diagnosis. British Medical Journal, 313, 529–530.
   Google Scholar
• Maguire, P. (1993). Facilitating psychological adapta-tionto a cancer diagnosis. Journal ofCancer Care, 2, 128–131.
   Google Scholar
• Meyers, B. 5. (1997). Telling patients they have Alzhe-imer's disease. British Medical Journal, 314,321–322.
   Google Scholar
• Mirra, S.S., Heyman, A., McKeel, D., Sumi, S.M., Crain, B.J., Brownlee, L.M., Vogel, F.S., Hughes, J.P., van Belle, G. & Berg, L. (1991). The Consor-tium to Establish a Registry for Alzheimer's Dis-ease (CERAD). Part II. Standardisation of the neu- ropathologic assessment of Alzheimer's disease. Neurology, 41, 479–486.
   PubMed Web of Science ®Google Scholar
• Post, S.G. & Foley, J.M. (1993). Biological Markers and Truth-telling. Alzheimer Disease and Associ-ated Disorders, 6, 201–204.
   Google Scholar
• Rice, K. & Warner, N. (1994). Breaking the bad news: What do psychiatrists tell patients with dementia about their illness? International Journal Of Geri-atric Psychiatry, 9,467–471.
   Google Scholar
• Rimmer, T.W. (1993). Bad news- who should be informed first? Journal of Cancer Care, 2, 6–10.
   Google Scholar
• Rogers, S.L. & Friedhoff, L.T. (1996). The efficacy and safety of Donepezil in patients with Alzheimer ' s disease: Results of a US multicentre, randomized, double-blind,placebo-contr olled trial. Dementia, 7, 293–303.
   PubMedGoogle Scholar
• Rohde, K., Peskind, E.R. & Raskind, M.A. (1995). Suicide in two patients with Alzheimer's disease.
   Google Scholar
• Journal of the American Geriatric Society, 43, 187–189.
   Google Scholar
• Roth, M., Tym, E., Mountjoy, C.Q., Huppert, F.A., Hendrie, H., Verma, S. & Goddard, R. (1986). Camdex: A standardised instrument for the diag-nosis of mental disorder in the elderly with special reference to the early detection of dementia. British Journal of Psychiatry, 149, 698–709.
   PubMed Web of Science ®Google Scholar
• Tierney, M.C., Fisher R.H., Lewis, A.J., Zorzitto, ML., Snow, W.G., Reid, D.W. & Nieuwstraten, P. (1988). The NINCDS -ADRDA work group criteria for the clinical diagnosis of probable Alzheimer's disease: A clinicopathological study of 57 cases. Neurol-ogy, 38, 359–364.
   Google Scholar
• Woodard, L.J. & Pamies, R.J. (1992). The disclosure of the diagnosis of cancer. Primary Care, 19, 657–663.
   Google Scholar
• Woods, B. (1995). Dementia care: Progress and prospects. Journal of Mental Health, 4, 115–124.
   Google Scholar