Caregivers’ beliefs about dementia: findings from the IDEAL study

References

• Alzheimer’s Association. (2017). 2017 Alzheimer’s disease facts and figure. Alzheimer’s & Dementia, 13, 325–373. doi:10.1016/j.jalz.2017.02.001
   Google Scholar
• Aminzadeh, F., Byszewski, A., Molnar, F. J., & Eisner, M. (2007). Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives. Aging & Mental Health, 11, 281–290. doi:10.1080/13607860600963695
   PubMed Web of Science ®Google Scholar
• Askham, J. (1995). Making sense of dementia: Carers’ perceptions. Ageing & Society, 15, 103–114. doi:10.1017/S0144686X00002142
   Web of Science ®Google Scholar
• Balducci, C., Mnich, E., McKee, K. J., Lamura, G., Beckmann, A., Krevers, B., … Öberg, B. (2008). Negative impact and positive value in caregiving: Validation of the COPE index in a six-country sample of carers. The Gerontologist, 48, 276–286. doi:10.1093/geront/48.3.276
   PubMed Web of Science ®Google Scholar
• Batsch, N. L., Mittleman, M. S., & Alzheimer’s Disease International. (2012). World Alzheimer report 2012: Overcoming the stigma of dementia. London, UK: Alzheimer’s Disease International.
   Google Scholar
• Bech, P. (2004). Measuring the dimension of psychological general well-being by the WHO-5. Quality of Life Newsletter, 32, 15–16.
   Google Scholar
• Broadbent, E. (2010). Illness perceptions and health: Innovations and clinical applications. Social and Personality Psychology Compass, 4, 256–266. doi:10.1111/j.1751-9004.2010.00260.x
   Google Scholar
• Broadbent, E., Petrie, K. J., Main, J., & Weinman, J. (2006). The Brief Illness Perception Questionnaire. Journal of Psychosomatic Research, 60, 631–637. doi:10.1016/j.jpsychores.2005.10.020
   PubMed Web of Science ®Google Scholar
• Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L., … Iliffe, S. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Medicine, 9, e1001331. doi:10.1371/journal.pmed.1001331
   PubMed Web of Science ®Google Scholar
• Clare, L., Nelis, S. M., Quinn, C., Martyr, A., Henderson, C., Hindle, J. V., … Victor, C. R. (2014). Improving the experience of dementia and enhancing active life- living well with dementia: Study protocol for the IDEAL study. Health & Quality of Life Outcomes, 12, 164. doi:10.1186/s12955-014-0164-6
   PubMed Web of Science ®Google Scholar
• Clare, L., Quinn, C., Jones, I. R., & Woods, R. T. (2016). ‘I Don’t think of it as an illness’: Illness representations in mild to moderate dementia. Journal of Alzheimers Disease, 51, 139–150. doi:10.3233/JAD-150794
   PubMed Web of Science ®Google Scholar
• Diefenbach, M. A., & Leventhal, H. (1996). The common-sense model of illness representation: Theoretical and practical considerations. Journal of Social Distress and the Homeless, 5, 11–37. doi:10.1007/BF02090456
   Web of Science ®Google Scholar
• Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 71–75. doi:10.1207/s15327752jpa4901_13
   PubMed Web of Science ®Google Scholar
• Donovan, H. S., & Ward, S. (2001). A representational approach to patient education. Journal of Nursing Scholarship, 33, 211–216. doi:10.1111/j.1547-5069.2001.00211.x
   PubMed Web of Science ®Google Scholar
• Dooley, J., Bass, N., & McCabe, R. (2018). How do doctors deliver a diagnosis of dementia in memory clinics? The British Journal of Psychiatry, 212, 239–245. doi:10.1192/bjp.2017.64
   PubMed Web of Science ®Google Scholar
• Evans, D., & Norman, P. (2009). Illness representations, coping and psychological adjustment to Parkinson’s disease. Psychology and Health, 24, 1181–1196. doi:10.1080/0887044082398188
   PubMed Web of Science ®Google Scholar
• Folstein, M. F., Folstein, F. E., & 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. doi:10.1016/0022-3956(75)900265-6
   PubMed Web of Science ®Google Scholar
• Glidewell, L., Johnston, M., & Thomas, R. (2012). Shared understandings of dementia? An application of the Common Sense Self Regulation Model to a case study. Dementia, 11, 217–250. doi:10.1177/1471301211416611
   Google Scholar
• Graham, C., Ballard, C., & Sham, P. (1997). Carers’ knowledge of dementia and their coping strategies and morbidity. International Journal of Geriatric Psychiatry, 12, 931–936. doi:10.1002/(SICI)1099-12:9 < 931::AID-GPS666 > 3.0.C.O;2-8
   PubMed Web of Science ®Google Scholar
• Greene, J. G., Smith, R., Gardiner, M., & Timbury, G. C. (1982). Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: A factor analytic study. Age and Ageing, 11, 121–126. doi:10.1093/ageing/11.2.121
   PubMedGoogle Scholar
• Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and Health, 18, 141–184. doi:10.1080/088704403100081321
   Web of Science ®Google Scholar
• Heijmans, M., de Ridder, D., & Bensing, J. (1999). Dissimilarity in patients’ and spouses’ representations of chronic illness: Exploration of relations to patient adaptation. Psychology & Health, 14, 451–466. doi:10.1080/08870449908407340
   Web of Science ®Google Scholar
• Hinton, L., Franz, C. E., Yeo, G., & Levkoff, S. E. (2005). Conceptions of dementia in a multiethnic sample of family caregivers. Journal of the American Geriatrics Society, 53, 1405–1410. doi:10.1111/j.1532-5415.2005.53409.x
   PubMed Web of Science ®Google Scholar
• Hinton, L., & Levkoff, S. (1999). Constructing Alzheimer’s: Narratives of lost identities, confusion and loneliness in old age. Culture, Medicine and Psychiatry, 23, 453–475. doi:10.1023/A:1005516002792
   PubMed Web of Science ®Google Scholar
• Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi:10.1177/1049732305276687
   PubMed Web of Science ®Google Scholar
• Irvin, B. L., & Acton, G. J. (1997). Stress, hope, and well-being of women caring for family members with Alzheimer’s disease. Holistic Nursing Practice, 11, 69–79. doi:10.1097/00004650-199701000-00010
   PubMedGoogle Scholar
• Limb, M. (2011). UK government spends £2m to raise awareness of dementia. BMJ, 343, d7235. doi:10.1136/bmj.d7235
   PubMedGoogle Scholar
• Lobban, F., Barrowclough, C., & Jones, S. (2004). The impact of beliefs about mental health problems and coping on outcome in schizophrenia. Psychological Medicine, 34, 1165–1176. doi:10.1017/S003329170400203X
   PubMed Web of Science ®Google Scholar
• Lobban, F., Barrowclough, C., & Jones, S. (2005). Assessing cognitive representations of mental health problems. II. The Illness Perception Questionnaire for Schizophrenia: Relatives’ version. British Journal of Clinical Psychology, 44, 163–179. doi:10.1348/014466504X19785
   PubMed Web of Science ®Google Scholar
• Lo Sterzo, E., & Orgeta, V. (2017). Illness representation and sense of coherence in dementia caregiving. Journal of Health Psychology, 22, 722–732. doi:10.1177/1359105315613132
   PubMed Web of Science ®Google Scholar
• Matchwick, C., Domone, R., Leroi, I., & Simpson, J. (2014). Perceptions of cause and control in people with Alzheimer’s disease. The Gerontologist, 54, 268–276. doi:10.1093/geront/gnt014
   PubMed Web of Science ®Google Scholar
• McConaghy, R., & Caltabiano, M. L. (2005). Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well-being. Nursing & Health Sciences, 7, 81–91. doi:10.1111/j.1442-2018.2005.00213.x
   PubMedGoogle Scholar
• National Institute for Health and Care Excellence. (2018). Dementia: Assessment, management and support for people living with dementia and their carers. Retrieved from nice.org.uk/guidance/ng97
   Google Scholar
• Pagel, M. D., Becker, J., & Coppel, D. B. (1985). Loss of control, self-blame, and depression: An investigation of spouse caregivers of Alzheimer’s disease patients. Journal of Abnormal Psychology, 94, 169–182. doi:10.1037/0021-843X.94.2.169
   PubMed Web of Science ®Google Scholar
• Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer report 2015. The global impact of dementia. London, UK: Alzheimer’s Disease International
   Google Scholar
• Pucci, E., Belardinelli, N., Borsetti, G., & Giuliani, G. (2003). Relatives’ attitudes towards informing patients about the diagnosis of Alzheimer’s disease. Journal of Medical Ethics, 29, 51–54. doi:10.1136/jme.29.1.51
   PubMed Web of Science ®Google Scholar
• Quinn, C., Jones, I. R., & Clare, L. (2017). Illness representations in caregivers of people with dementia. Aging & Mental Health, 21, 553–561. doi:10.1080/13607863.2015.1128882
   PubMed Web of Science ®Google Scholar
• Quinn, C., Morris, R. G., & Clare, L. (2018). Beliefs about dementia: Development and validation of the Representations and Adjustment to Dementia Index (RADIX). The American Journal of Geriatric Psychiatry, 26, 680–689. doi:10.1016/j.jagp.2018.02.004
   PubMed Web of Science ®Google Scholar
• Rexhaj, S., Python, N. V., Morin, D., Bonsack, C., & Favrod, J. (2013). Correlational study: Illness representations and coping styles in caregivers for individuals with schizophrenia. Annals of General Psychiatry, 12, 27. doi:10.1186/1744-859X-12-27
   PubMed Web of Science ®Google Scholar
• Roberts, J. S., & Connell, C. M. (2000). Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Disease & Associated Disorders, 14, 129–136. doi:10.1097/00002093-200007000-00003
   PubMed Web of Science ®Google Scholar
• Scodellaro, C., & Pin, S. (2013). The ambiguous relationships between aging and Alzheimer’s disease: A critical literature review. Dementia, 12, 137–151. doi:10.1177/1471301211421230
   PubMedGoogle Scholar
• Weinman, J., Petrie, K. J., Moss-Morris, R., & Horne, R. (1996). The illness perception questionnaire: A new method for assessing the cognitive representation of illness. Psychology & Health, 11(3), 431–445. doi:10.1080/08870449608400270
   Web of Science ®Google Scholar