Hostname: page-component-78c5997874-v9fdk Total loading time: 0 Render date: 2024-11-13T03:54:16.761Z Has data issue: false hasContentIssue false
  • English
  • Français

Professional caregivers’ knowledge, beliefs and attitudes about awareness in advanced dementia: a systematic review of qualitative studies

Published online by Cambridge University Press:  21 February 2019

H. Rice ,
R. Howard  and
J. Huntley
H. Rice
Affiliation:
Imperial College NHS Foundation Trust, London, UK
R. Howard
Affiliation:
Division of Psychiatry, University College London, London, UK
J. Huntley*
Affiliation:
Division of Psychiatry, University College London, London, UK
*
Correspondence should be addressed to: Jonathan Huntley, Division of Psychiatry, University College London, London, UK. Email: j.huntley@ucl.ac.uk.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives:

Awareness can be defined as a response to, or evaluation of, an aspect of one’s situation or internal state. Awareness becomes impaired as dementia progresses; however, the exact nature and degree of impairment in advanced dementia remains unclear. The extent to which caregivers understand or make assumptions about the level and nature of awareness in advanced dementia may have a significant impact on their ability to appropriately respond to and care for the person with dementia. This systematic review examines the literature regarding professional caregiver perceptions about awareness in advanced dementia.

Design:

A systematic search of online literature databases (PsychInfo, Medline, Embase, CINAHL) was conducted up to January 15, 2018, using a range of search terms related to dementia, awareness and caregiver attitudes.

Results:

The systematic review included a total of 10 qualitative studies that were heterogeneous in aspects of design, including analyses. Narrative synthesis was used to integrate results. Four major themes were identified from review of the papers: how professional caregivers defined awareness; professional caregiver beliefs about what influences the expression of awareness; professional caregiver beliefs around how to assess awareness in advanced dementia; and the perceived impact of episodes of increased awareness on the person with dementia and caregiver. Sub-themes were identified within each of these areas.

Conclusion:

This review highlights the importance of professional caregiver perceptions of awareness in advanced dementia. Supporting professional caregivers to assess and understand the nature of awareness in advanced dementia would improve their approach to care and outcomes for people with dementia.

Keywords

awarenessadvanced dementiacaregiver
Type
Review Article
Information
International Psychogeriatrics , Volume 31 , Issue 11: Issue Theme: Psychiatric Morbidity in Exceptionally Old People , November 2019 , pp. 1599 - 1609
Copyright
© International Psychogeriatric Association 2019 

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

Aalten, P., Van Valen, E., Clare, L., Kenny, G. and Verhey, F. (2005). Awareness in dementia: a review of clinical correlates. Aging & Mental Health, 9, 414–422. doi: 10.1080/13607860500143075.CrossRefGoogle ScholarPubMed
Alnes, R. E., Kirkevold, M. and Skovdahl, K. (2011). Insights gained through Marte Meo counselling: experiences of nurses in dementia specific care units. International Journal of Older People Nursing, 6, 123–132.CrossRefGoogle Scholar
Berg, A., Hallberg, I. and Norberg, A. (1998). Nurses reflections about dementia care, the patients, the care and themselves in their daily caregiving. International Journal of Nursing Studies, 35, 271–282.CrossRefGoogle ScholarPubMed
Clare, L. (2010). Awareness in people with severe dementia: review and integration. Aging & Mental Health, 14, 20–32. doi: 10.1080/13607860903421029.CrossRefGoogle Scholar
Clare, L., Marková, I., Verhey, F. and Kenny, G. (2005). Awareness in dementia: a review of assessment methods and measures. Aging & Mental Health, 9, 394–413.CrossRefGoogle ScholarPubMed
Clare, L., Marková, I. S., Roth, I. and Morris, R. G. (2011). Awareness in Alzheimer’s disease and associated dementias: theoretical framework and clinical implications. Aging & Mental Health, 15, 936–944. doi: 10.1080/13607863.2011.583630.CrossRefGoogle ScholarPubMed
Clare, L., Rowlands, J., Bruce, E., Surr, C. and Downs, M. (2008). ‘I don’t do like I used to do’: a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. Social Science & Medicine, 66, 2366–2377.CrossRefGoogle ScholarPubMed
Clare, L. et al. (2012). AwareCare: development and validation of an observational measure of awareness in people with severe dementia. Neuropsychological Rehabilitation, 22, 113–133.CrossRefGoogle ScholarPubMed
Clare, L. et al. (2013). AwareCare: a pilot randomized controlled trial of an awareness-based staff training intervention to improve quality of life for residents with severe dementia in long-term care settings. International Psychogeriatrics, 25, 128–139.CrossRefGoogle ScholarPubMed
Cotrell, V. and Wild, K. (1999). Longitudinal study of self-imposed driving restrictions and deficit awareness in patients with Alzheimer disease. Alzheimer Disease and Associated Disorders, 13, 151–156.CrossRefGoogle ScholarPubMed
Duke, L. M., Seltzer, B., Seltzer, J. E. and Vasterling, J. J. (2002). Cognitive components of deficit awareness in Alzheimer’s disease. Neuropsychology, 16, 359–369.CrossRefGoogle ScholarPubMed
Edvardsson, D., Winblad, B. and Sandman, P. O. (2008). Person-centred care of people with severe Alzheimer’s disease: current status and ways forward. The Lancet Neurology, 7, 362–367.CrossRefGoogle ScholarPubMed
Green, J., Goldstein, F. C., Sirockman, B. E. and Green, R. C. (1993). Variable awareness of deficits in Alzheimer’s disease. Neuropsychiatry, Neuropsychology and Behavioral Neurology, 6, 143–207.Google Scholar
Hansebo, G. and Kihlgren, M. (2001). Carers’ reflections about their video-recorded interactions with patients suffering from severe dementia. Journal of Clinical Nursing, 10, 737–747.CrossRefGoogle ScholarPubMed
Innes, A. and Surr, C. (2001). Measuring the well-being of people with dementia living in formal care settings: the use of Dementia Care Mapping. Aging & Mental Health, 5, 258–268.CrossRefGoogle ScholarPubMed
Karger, C. R. (2018). Emotional experience in patients with advanced Alzheimer’s disease from the perspective of families, professional caregivers, physicians, and scientists. Aging & Mental Health, 22, 316–322.CrossRefGoogle ScholarPubMed
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22. doi: 10.1080/13607869757344.CrossRefGoogle Scholar
Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S. and Fernandez, J. L. (2007). Dementia UK: The Full Report. London: Alzheimer’s Society.Google Scholar
Lawton, M. P. (1994). Quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 8 Suppl 3, 138–150.CrossRefGoogle ScholarPubMed
Magai, C., Cohen, C., Gomberg, D., Malatesta, C. and Culver, C. (1996). Emotional expression during mid- to late-stage dementia. International Psychogeriatrics, 8, 383–395.CrossRefGoogle ScholarPubMed
Markova, I. S. and Berrios, G. E. (2001). The “object” of insight assessment: relationship to insight “structure”. Psychopathology, 34, 245–252.CrossRefGoogle ScholarPubMed
Nicholls, D., Chang, E., Johnson, A. and Edenborough, M. (2013). Touch, the essence of caring for people with end-stage dementia: a mental health perspective in Namaste Care. Aging & Mental Health, 17, 571–578.CrossRefGoogle ScholarPubMed
Norberg, A., Melin, E. and Asplund, K. (1986). Reactions to music, touch and object presentation in the final stage of dementia: an exploratory study. International Journal of Nursing Studies, 23, 315–323.CrossRefGoogle ScholarPubMed
Normann, H. K., Asplund, K. and Norberg, A. (1998). Episodes of lucidity in people with severe dementia as narrated by formal carers. Journal of Advanced Nursing, 28, 1295–1300.CrossRefGoogle ScholarPubMed
O’Connor, D. et al. (2007). Personhood in dementia care: developing a research agenda for broadening the vision. Dementia, 6, 121–142. doi: 10.1177/1471301207075648.CrossRefGoogle Scholar
Oliver, S. et al. (2005). An emerging framework for including different types of evidence in systematic reviews for public policy. Evaluation, 11, 428–446. doi: 10.1177/1356389005059383.CrossRefGoogle Scholar
Pasman, H., The, B. A. M., Onwuteaka‐Philipsen, B. D., Van Der Wal, G. and Ribbe, M. W. (2003). Feeding nursing home patients with severe dementia: a qualitative study. Journal of Advanced Nursing, 42, 304–311.CrossRefGoogle ScholarPubMed
Quinn, C., Clare, L., Jelley, H., Bruce, E. and Woods, B. (2014). ‘It’s in the eyes’: how family members and care staff understand awareness in people with severe dementia. Aging & Mental Health, 18, 260–268. doi: 10.1080/13607863.2013.827627.CrossRefGoogle ScholarPubMed
Rasmussen, H. and Hellzen, O. (2013). The meaning of long-term caregiving for patients with frontal lobe dementia. International Journal of Qualitative Studies on Health and Well-being, 8, 19860.CrossRefGoogle ScholarPubMed
Snilstveit, B., Oliver, S. and Vojtkova, M. (2012). Narrative approaches to systematic review and synthesis of evidence for international development policy and practice. Journal of Development Effectiveness, 4, 409–429. doi: 10.1080/19439342.2012.710641.CrossRefGoogle Scholar
World Health Organisation (2012). Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organisation.Google Scholar
Supplementary material: File

Rice et al. supplementary material

Rice et al. supplementary material 1

Download Rice et al. supplementary material(File)
File 121.9 KB