‘It's in the eyes’: how family members and care staff understand awareness in people with severe dementia

References

• Abramowitz, L. (2008). Working with advanced dementia patients in a day care setting. Journal of Gerontological Social Work, 50, 25–35. doi: 10.1300 /J083v50n3_03
   Google Scholar
• Astell, A.J., & Ellis, M.P. (2006). The social function of imitation in severe dementia. Infant and Child Development, 15, 311–319. doi: 10.1002 /icd.455
   Google Scholar
• Barbour, R. (2008). Doing focus groups. London: Sage.
   Google Scholar
• Boller, F., Verny, M., Hugonot-Diener, L., & Saxton, J. (2002). Clinical features and assessment of severe dementia: A review. European Journal of Neurology, 9, 125–136. doi: 10.1046 /j.1468-1331.2002.00356.x
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi: 10.1191 /1478088706qp063oa
   Google Scholar
• Clare, L. (2010). Awareness in people with severe dementia: Review and integration. Aging & Mental Health, 14, 20–32. doi: 10.1080 /13607860903421029
   Google Scholar
• Clare, L., Markova, I., Roth, I., & Morris, R. (2011). Awareness in Alzheimer's disease and associated dementias: Theoretical framework and clinical implications. Aging and Mental Health, 15, 936–944. doi: 10.1080 /13607863.2011.583630
   Google Scholar
• Clare, L., Rowlands, J., Bruce, E., Surr, C., & Downs, M. (2008). ‘I don't do like I used to’: A grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. Social Science and Medicine, 66, 2366–2377. doi: 10.1016 /j.socscimed.2008.01.045
   Google Scholar
• Clare, L., Whitaker, R., Quinn, C., Jelley, H., Hoare, Z., Woods, B., … Wilson, B. (2012). AwareCare: Development and validation of an observational measure of awareness in people with severe dementia. Neuropsychological Rehabilitation, 22, 113–133. doi: 10.1080 /09602011.2011.640467
   Google Scholar
• Clare, L., Whitaker, R., Woods, R.T., Quinn, C., Jelley, H., Hoare, Z., … Wilson, B.A. (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(1), 128–139. doi: 10.1017 /S1041610212001226
   Google Scholar
• Cohen-Mansfield, J., Marx, M.S., Freedman, L.S., Murad, H., Thein, K., & Dakheel-Ali, M. (2012). What affects pleasure in persons with advanced stage dementia? Journal of Psychiatric Research, 46, 402–406. doi: 10.1016 /j.jpsychires.2011.12.003
   Google Scholar
• Cohen-Mansfield, J., Thein, K., Dakheel-Ali, M., & Marx, M.S. (2010). Engaging nursing home residents with dementia in activities: The effects of modeling, presentation order, time of day, and setting characteristics. Aging & Mental Health, 14, 471–480. doi: 10.1080 /13607860903586102
   Google Scholar
• Ekman, S.-L., Norberg, A., Viitanen, M., & Winblad, B. (1991). Care of demented patients with severe communication problems. Scandinavian Journal of Caring Sciences, 5, 163–170.
   Google Scholar
• Elliott, R., Fischer, C.T., & Rennie, D.L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215–229. doi: 10.1348 /014466599162782
   Google Scholar
• Eritz, H., & Hadjistavropoulos, T. (2011). Do informal caregivers consider nonverbal behavior when they assess pain in people with severe dementia. The Journal of Pain, 12, 331–339. doi: 10.1016 /j.jpain.2010.07.012
   Google Scholar
• Hansebo, G., & Kihlgren, M. (2002). Carers’ interactions with patients suffering from severe dementia: A difficult balance to facilitate mutual togetherness. Journal of Clinical Nursing, 11, 225–236. doi: 10.1046 /j.1365-2702.2002.00601.x
   Google Scholar
• Hubbard, G., Cook, A., Tester, S., & Downs, M. (2002). Beyond words older people with dementia using and interpreting nonverbal behaviour. Journal of Aging Studies, 16, 155–167. doi: 10.1016 /S0890-4065(02)00041-5
   Google Scholar
• Jansson, L., Norberg, A., Sandamn, P.-O., Athlin, E., & Asplund, K. (1992). Interpreting facial expressions in patients in the terminal stage of the Alzheimer disease. Omega, 26, 309–324. doi: 10.2190 /HFR8-R09R-W3KL-1LBB
   Google Scholar
• Kellett, U.M. (1998). Meaning-making for family carers in nursing homes. International Journal of Nursing Practice, 4, 113–119. doi: 10.1046 /j.1440-172X.1998.00072.x
   Google Scholar
• Kovach, C.R., & Magliocco, J.S. (1998). Late-stage dementia and participation in therapeutic activities. Applied Nursing Research, 11, 167–173. doi: 10.1016 /S0897-1897(98)80285-1
   Google Scholar
• Lawton, M.P., Van Haitsma, K., & Klapper, J. (1996). Observed affect in nursing home residents with Alzheimer's disease. Journal of Gerontology: Psychological Sciences, 51, 3–14. doi: 10.1093 /geronb/51B.1.P3
   Google Scholar
• Neufeld, A., & Harrison, M.J. (1998). Men as caregivers: Reciprocal relationships or obligation? Journal of Advanced Nursing, 28, 959–968. doi: 10.1046 /j.1365-2648.1998.00818.x
   Google Scholar
• Norberg, A., Melin, E., & Asplund, K. (2003). Reactions to music, touch and object presentation in the final stages of dementia: An exploratory study. International Journal of Nursing Studies, 40, 473–479. doi: 10.1016 /S0020-7489(03)00062-2
   Google Scholar
• Polk, D.M. (2005). Communication and family caregiving for Alzheimer's dementia: Linking attributions and problematic integration. Health Communication, 18, 257–273. doi: 10.1207 /s15327027hc1803_4
   Google Scholar
• Ward, R., Vass, A.A., Aggarwal, N., Garfield, C., & Cybyk, B. (2008). A different story: Exploring patterns of communication in residential dementia care. Ageing and Society, 28, 629–651. doi: 10.1017 /S0144686×07006927
   Google Scholar
• Whittemore, R., Chase, S.K., & Mandle, C.L. (2001). Validity in qualitative research. Qualitative Health Research, 11, 522–537. doi: 10.1177 /104973201129119299
   Google Scholar
• Woods, B., Keady, J., & Seddon, D. (2007). Involving families in care homes: A relationship-centred approach to dementia care. London: Jessica Kingsley.
   Google Scholar