Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-22T18:25:18.568Z Has data issue: false hasContentIssue false
  • English
  • Français

Exploring the experiences of people with mild cognitive impairment and their caregivers with particular reference to healthcare – a qualitative study

Published online by Cambridge University Press:  28 November 2013

Katherine Dean ,
Crispin Jenkinson ,
Gordon Wilcock  and
Zuzana Walker
Katherine Dean*
Affiliation:
Nuffield Department of Medicine, University of Oxford, Oxford, UK
Crispin Jenkinson
Affiliation:
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Headington, Oxford, UK
Gordon Wilcock
Affiliation:
Nuffield Department of Medicine, John Radcliffe Hospital, University of Oxford, Headley Way, Oxford, UK
Zuzana Walker
Affiliation:
Mental Health Sciences Unit, University College London, UK
*
Correspondence should be addressed to: Dr. Katherine Dean, Nuffield Department of Medicine, University of Oxford, Level 5, John Radcliffe Hospital, Headley Way, Oxford, OX3 9DU. Email: [email protected].
Get access

Abstract

Background:

The aim of this study was to investigate the experiences of people with mild cognitive impairment (MCI; PWMCI) and their “advocates,” particularly within healthcare services.

Methods:

Semi-structured interviews were conducted with 23 PWMCI diagnosed ≤6 months ago and 20 advocates recruited via patients. The resulting data were content-analyzed.

Results:

PWMCI interviewed rarely reported negative impressions of their general practitioner (GP). Reports regarding memory services were more mixed: positive impressions related to finding the service to be “well run” and the staff “pleasant,” negative ones to the assessment process or a perceived lack of feedback. Aside from improved information provision, most PWMCI had no suggestions for improvements to their healthcare. However, these results should be interpreted with caution as many of the PWMCI interviewed displayed evidence of impaired recall and/or insight relating to their condition and healthcare. Advocates generally reported more negative impressions of both contact with the PWMCI's GP (most commonly reporting a “dismissive” attitude) and memory services (with common complaints relating to the assessments used in clinics and lengthy waiting times). This group generally had suggestions for improvements to services – particularly regarding information provision, changes in the assessment process, and improvements in communication by services.

Conclusions:

To our knowledge, this is the first in-depth study of the difficulties experienced by PWMCI and their advocates which includes the context of healthcare provision. The specific needs of these groups, as described here, as well as those of people with dementia, should be considered when designing memory clinics and other related services.

Keywords

mild cognitive impairmentmemory clinicscarersqualitative research
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 3 , March 2014 , pp. 475 - 485
Copyright
Copyright © International Psychogeriatric Association 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adams, K. B. (2006). The transition to caregiving: the experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47, 3–29.Google Scholar
Austrom, M. G. and Lu, Y. (2009). Long-term caregiving: helping families of persons with mild cognitive impairment cope. Current Alzheimer Research, 6, 392–398.Google Scholar
Blieszner, R. and Roberto, K. A. (2010). Care partner responses to the onset of mild cognitive impairment. Gerontologist, 50, 11–22.Google Scholar
Blieszner, R., Roberto, A., Wilcox, L., Barham, J. and Winston, L. (2007). Dimensions of ambiguous loss in couples coping with mild cognitive impairment. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 56, 196–209.Google Scholar
Bruce, J. M., McQuiggan, M., Williams, V., Westervelt, H. and Tremont, G. (2008). Burden among spousal and child caregivers of patients with mild cognitive impairment. Dementia and Geriatric Cognitive Disorders, 25, 385–390.Google Scholar
Cahill, S. M., Gibb, M., Bruce, I., Headon, M. and Drury, M. (2008). I was worried coming in because I don't really know why it was arranged. Dementia, 7, 175–189.Google Scholar
Department of Health. (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health.Google Scholar
Department of Health. (2012). Prime Minister's Challenge on Dementia. London: Department of Health.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-Mental State”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.Google Scholar
Frank, L. et al. (2006a). Validation of a new symptom impact questionnaire for mild to moderate cognitive impairment. International Psychogeriatrics, 18, 135–149.Google Scholar
Frank, L. et al. (2006b). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151–162.Google Scholar
Garand, L., Dew, M. A., Eazor, L. R., DeKosky, S. T. and Reynolds, C. F. 3rd (2005). Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment. International Journal of Geriatric Psychiatry, 20, 512–522.Google Scholar
Gauthier, S. et al. (2006). Mild cognitive impairment. Lancet, 367, 1262–1270.Google Scholar
Hamann, J. et al. (2011). Patient participation in medical and social decisions in Alzheimer's disease. Journal of the American Geriatric Society, 59, 2045–2052.Google Scholar
Joosten-Weyn Banningh, L., Vernooij-Dassen, M., Rikkert, M. O. and Teunisse, J. P. (2008). Mild cognitive impairment: coping with an uncertain label. International Journal Geriatric Psychiatry, 23, 148–154.Google Scholar
Kuo, L. M. and Shyu, Y. I. (2010). Process of ambivalent normalisation: experience of family caregivers of elders with mild cognitive impairment in Taiwan. Journal of Clinical Nursing, 19, 3477–3484.Google Scholar
Lu, Y. F. and Haase, J. E. (2009). Experience and perspectives of caregivers of spouse with mild cognitive impairment. Current Alzheimer Research, 6, 384–391.Google Scholar
Lu, Y. Y. and Haase, J. E. (2011). Content validity and acceptability of the daily enhancement of meaningful activity program: intervention for mild cognitive impairment patient-spouse dyads. Journal of Neuroscience Nursing, 43, 317–328.Google Scholar
Lu, Y.-F. Y., Haase, J. E. and Farran, C. J. (2007). Perspectives of persons with mild cognitive impairment: sense of being able. Alzheimer's Care Today, 8, 75–86.Google Scholar
Matthews, F. E., Stephan, B. C., McKeith, I. G., Bond, J. and Brayne, C. (2008). Two-year progression from mild cognitive impairment to dementia: to what extent do different definitions agree? Journal of American Geriatric Society, 56, 1424–1433.Google Scholar
Mitchell, A. J., Meader, N. and Pentzek, M. (2011). Clinical recognition of dementia and cognitive impairment in primary care: a meta-analysis of physician accuracy. Acta Psychiatrica Scandinavica, 124, 165–183.Google Scholar
Mitchell, A. J. and Shiri-Feshki, M. (2009). Rate of progression of mild cognitive impairment to dementia–meta-analysis of 41 robust inception cohort studies. Acta Psychiatrica Scandinavica, 119, 252–265.Google Scholar
Palmer, K., Backman, L., Winblad, B. and Fratiglioni, L. (2008). Mild cognitive impairment in the general population: occurrence and progression to Alzheimer's disease. American Journal of Geriatric Psychiatry, 16, 603–611.Google Scholar
Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G. and Kokmen, E. (1999). Mild cognitive impairment: clinical characterization and outcome. Archives of Neurology, 56, 303–308.Google Scholar
Roberts, J. L., Clare, L. and Woods, R. T. (2009). Subjective memory complaints and awareness of memory functioning in mild cognitive impairment: a systematic review. Dementia and Geriatric Cognitive Disorders, 28, 95–109.Google Scholar
Roberts, J. S., Karlawish, J. H., Uhlmann, W. R., Petersen, R. C. and Green, R. C. (2010). Mild cognitive impairment in clinical care: a survey of American Academy of Neurology members. Neurology, 75, 425–431.Google Scholar
Ryan, K. A., et al. (2010). Caregiver support service needs for patients with mild cognitive impairment and Alzheimer's disease. Alzheimer Disease and Associated Disorders, 24, 171–176.Google Scholar
Starkstein, S. E. et al. (1997). Prospective longitudinal study of depression and anosognosia in Alzheimer's disease. British Journal of Psychiatry, 171, 47–52.Google Scholar
van Hout, H. P. J., Vernooij-Dassen, M. J. F. J., Hoefnagels, W. H. L. and Grol, R. P. T. M. (2001). Measuring the opinions of memory clinic users: patients, relatives and general practitioners. International Journal of Geriatric Psychiatry, 16, 846–851.Google Scholar
Vogel, A., Stokholm, J., Gade, A., Andersen, B. B., Hejl, A. M. and Waldemar, G. (2004). Awareness of deficits in mild cognitive impairment and Alzheimer's disease: do MCI patients have impaired insight? Dementia and Geriatric Cognitive Disorders, 17, 181–187.Google Scholar
Wahlund, L. O., Pihlstrand, E. and Jonhagen, M. E. (2003). Mild cognitive impairment: experience from a memory clinic. Acta Neurologica Scandinavica Supplement, 179, 21–24.Google Scholar