References | Adams, K. B. and Sanders, S. (2004). Alzheimers caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease: a mixedmethod analysis. Dementia, 3, 195–210. https://doi.org/10 .1177/1471301204042337. Bakker, C. et al. (2013). The use of formal and informal care in early onset dementia: results from the NeedYD study. The American Journal of Geriatric Psychiatry, 21, 37–45. https:// doi.org/10.1016/j.jagp.2012.10.004. Blandin, K. and Pepin, R. (2017). Dementia grief: a theoretical model of a unique grief experience. Dementia (London, England), 16, 67–78. https://doi.org/10.1177/ 1471301215581081. Braun, V. and Clarke, V. (2012). Thematic analysis, Research designs: Quantitative, qualitative, neuropsychological, and biological. In: H. Cooper and e tal (Eds.), APA Handbook of Research Methods in Psychology. vol. 2, p. 57–71). Washington, DC, US: American Psychological Association. https://doi.org/10.1037/13620- 004. Brotherhood, E. V. et al. (2020). Protocol for the rare dementia support impact study: RDS impact. International Journal of Geriatric Psychiatry, 35, 833–841. https://doi .org/10.1002/gps.5253. Brown, A. et al. (2019). Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL. Quality of Life Research, 28, 2299–2310. https://doi.org/10.1007/s11136-019-02186-w. Chan, D., Livingston, G., Jones, L. and Sampson, E. L. (2013). Grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry, 28, 1– 17. https://doi.org/10.1002/gps.3795. Chien, L.-Y. et al. (2011). Caregiver support groups in patients with dementia: a meta-analysis. International Journal of Geriatric Psychiatry, 26, 1089–1098. https://doi .org/10.1002/gps.2660. Collins, C., Liken, M., King, S. and Kokinakis, C. (1993). Loss and grief among family caregivers of relatives with dementia. Qualitative Health Research, 3, 236–253. https:// doi.org/10.1177/104973239300300206. Crespo, M., López, J. and Zarit, S. H. (2005). Depression and anxiety in primary caregivers: a comparative study of caregivers of demented and nondemented older persons. International Journal of Geriatric Psychiatry, 20, 591–592. https://doi.org/10.1002/gps.1321. Czaja, S. J., Loewenstein, D., Schulz, R., Nair, S. N. and Perdomo, D. (2013). A videophone psychosocial intervention for dementia caregivers. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 21, 1071–1081. https:// doi.org/10.1016/j.jagp.2013.02.019. Dam, A. E. H., de Vugt, M. E., Klinkenberg, I. P. M., Verhey, F. R. J. and van Boxtel, M. P. J. (2016). A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas, 85, 117–130. https://doi.org/10.1016/j .maturitas.2015.12.008. Diwan, S., Hougham, G. W. and Sachs, G. A. (2009). Chronological patterns and issues precipitating grieving over the course of caregiving among family caregivers of persons with dementia. Clinical Gerontologist, 32, 358–370. https:// doi.org/10.1080/07317110903110179. Doka, K. J. (2008). Disenfranchised grief in historical and cultural perspective. In: M. S. Stroebe, et al. (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp 223–240). Washington, DC, USA: American Psychological Association. https://doi.org/ 10.1037/14498-011. Durepos, P., Akhtar-Danesh, N., Ploeg, J., Sussman, T. and Kaasalainen, S. (2021). Caring ahead: mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia. Palliative Medicine, 35, 768–784. https://doi.org/10.1177/ 0269216321994732. Harvey, R. J., Roques, P., Fox, N. C. and Rossor, M. N. (1996). Non-Alzheimer dementias in young patients. The British Journal of Psychiatry, 168, 384–385. https://doi.org/ 10.1192/bjp.168.3.384b. Hendriks, S. et al. (2021). Global prevalence of young-onset dementia: a systematic review and meta-analysis. JAMA Neurology, 78, 1080–1090. https://doi.org/10.1001/ jamaneurol.2021.2161. Hvidsten, L. et al. (2020). Quality of life of family carers of persons with young-onset compared to late-onset dementia. Aging & Mental Health, 24, 1394–1401. https://doi.org/10 .1080/13607863.2019.1617245. Koedam, E. L. G. E. et al. (2010). Early- versus late-onset Alzheimers disease: more than age alone. Journal of Alzheimer’s Disease, 19, 1401–1408. https://doi.org/10 .3233/JAD-2010-1337. Kroenke, K., Spitzer, R. L. and Williams, J. B. W. (2001). The PHQ-9. Journal of General Internal Medicine, 16, 606– 613. https://doi.org/10.1046/j.1525-1497.2001 .016009606.x. Lindauer, A. and Harvath, T. A. (2014). Pre-death grief in the context of dementia caregiving: a concept analysis. Journal of Advanced Nursing, 70, 2196–2207. https://doi .org/10.1111/jan.12411. Lubben, J. et al. (2006). Performance of an abbreviated version of the Lubben Social Network Scale among three European community-dwelling older adult populations. The Gerontologist, 46, 503–513. https://doi.org/10.1093/ geront/46.4.503. MacCourt, P., McLennan, M., Somers, S. and Krawczyk, M. (2017). Effectiveness of a grief intervention for caregivers of people with dementia. OMEGA Journal of Death and Dying, 75, 230–247. https://doi.org/10.1177/ 0030222816652802. Marziali, E. and Garcia, L. J. (2011). Dementia caregivers responses to 2 internet-based intervention programs. American Journal of Alzheimer’s Disease and Other Dementias, 26, 36–43. https://doi.org/10.1177/ 1533317510387586. Mayrhofer, A. M. et al. (2020). Young onset dementia: public involvement in co-designing community-based support. Dementia, 19, 1051–1066. https://doi.org/10 .1177/1471301218793463. Meichsner, F., Schinköthe, D. and Wilz, G. (2016). The Caregiver Grief Scale: development, exploratory and confirmatory factor analysis, and validation. Clinical Gerontologist, 39, 342–361. https://doi.org/10.1080/ 07317115.2015.1121947.Meuser, T. M. and Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41, 658–670. https://doi.org/10.1093/geront/ 41.5.658. Millenaar, J. K., Bakker, C., Koopmans, R. T. C. M., Verhey, F. R. J., Kurz, A. and de Vugt, M. E. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 31, 1261–1276. https://doi.org/10.1002/gps.4502. Millenaar, J. K. et al. (2016). The impact of young onset dementia on informal caregivers compared with late onset dementia: results from the NeedYD study. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 24, 467–474. https://doi .org/10.1016/j.jagp.2015.07.005. Moore, K. J. et al. (2017). Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatrics, 17, 135. https://doi.org/10.1186/s12877-017- 0523-3. Moore, K. J., Crawley, S., Vickerstaff, V., Cooper, C., King, M. and Sampson, E. L. (2020). Is preparation for end of life associated with pre-death grief in caregivers of people with dementia? International Psychogeriatrics, 32, 753–763. https://doi.org/10.1017/S1041610220000289. Ott, C. H., Kelber, S. T. and Blaylock, M. (2010). Easing the way, for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention. Research in Gerontological Nursing, 3, 89–99. https://doi.org/10.3928/ 19404921-20100302-01. Paun, O. and Cothran, F. (2019). Chronic grief management: a live-streaming video, group-based intervention for family caregivers of individuals with dementia in long-term care. Journal of Psychosocial Nursing and Mental Health Services, 57, 17–24. https://doi.org/10 .3928/02793695-20180601-03. Pinquart, M. and Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging, 18, 250–267. https://doi.org/10.1037/0882-7974.18 .2.250. Roach, L., Laidlaw, K., Gillanders, D. and Quinn, K. (2013). Validation of the Caregiver Guilt Questionnaire (CGQ) in a sample of British dementia caregivers. International Psychogeriatrics, 25, 2001–2010. https://doi.org/ 10.1017/S1041610213001506. Romero, M. M., Ott, C. H. and Kelber, S. T. (2014). Predictors of grief in bereaved family caregivers of persons with Alzheimer’s disease: a prospective study. Death Studies, 38, 395–403. https://doi.org/10.1080/07481187 .2013.809031. Rossor,M.N., Fox, N. C.,Mummery, C. J., Schott, J.M. and Warren, J. D. (2010). The diagnosis of young-onset dementia. The LancetNeurology, 9, 793–806. https://doi.org/ 10.1016/S1474-4422(10)70159-9. Sanders, S. and Corley, C. S. (2003). Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimers disease. Social Work in Health Care, 37, 35–53. https://doi.org/10.1300/J010v37n03_03. Sanders, S. and Sharp, A. (2004). The utilization of a psychoeducational group approach for addressing issues of grief and loss in caregivers of individuals with Alzheimers disease. Journal of Social Work in Long-Term Care, 3, 71–89. https://doi.org/10.1300/J181v03n02_06. Spitzer, R. L., Kroenke, K., Williams, J. B. W. and Löwe, B. (2006). A brief measure for assessing Generalized Anxiety Disorder: the GAD-7. Archives of Internal Medicine, 166, 1092–1097. https://doi.org/10.1001/archinte .166.10.1092. Stamou, V. et al. (2021). Services for people with young onset dementia: the, Angela, project national UK survey of service use and satisfaction. International Journal of Geriatric Psychiatry, 36, 411–422. https://doi.org/10.1002/ gps.5437. Waddington, C. et al. (2022). The development of videoconference-based support for people living with rare dementias and their carers: protocol for a 3-phase support group evaluation. JMIR Research Protocols, 11, e35376. https://doi.org/10.2196/35376. Wagnild, G. (2009). The Resilience Scale user’s guide for the US English version of the Resilience Scale and the 14-item Resilience Scale. Montana, US: The Resilience Centre. Wimo, A., Gauthier, S. and Prince, M. (2018). Global estimates of informal care, Alzheimer’s Disease International and Karolinska Institutet. https://www.alzint .org/resource/global-estimates-of-informal-care/. Woolley, J. D., Khan, B. K., Murthy, N. K., Miller, B. L. and Rankin, K. P. (2011). The diagnostic challenge of psychiatric symptoms in neurodegenerative disease: rates of and risk factors for prior psychiatric diagnosis in patients with early neurodegenerative disease. The Journal of Clinical Psychiatry, 72, 126–133. https://doi.org/10.4088/ JCP.10m06382oli. Zarit, S. H., Todd, P. A. and Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: a longitudinal study. The Gerontologist, 26, 260–266. https:// doi.org/10.1093/geront/26.3.260. |
---|