Ablitt, A., Jones, G. V. and Muers, J. (2009). Living with dementia: a systematic review of the influence of relationship factors. Aging & Mental Health, 13, 497–511.
Boyle, M. H. (1998). Guidelines for evaluating prevalence studies. Evidence Based Mental Health, 1, 37–39.
Butcher, H. K., Holkup, P. A., Park, M. and Maas, M. (2001). Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Research in Nursing & Health, 24, 470–480.
Cairns, M. (2012). In sickness and in health: an exploration of some of the unconscious processes involved in the decision by family caregivers to place a family member with dementia in residential care. Psychoanalytic Psychotherapy, 26, 34–47.
Caron, C. D., Ducharme, F. and Griffith, J. (2006). Deciding on institutionalisation for a relative with dementia: the most difficult decision for caregivers. Canadian Journal on Aging, 25, 193–205.
Chang, Y. P. and Schneider, J. K. (2010). Decision-making process of nursing home placement among Chinese family caregivers. Perspectives in Psychiatric Care, 46, 108–118.
Chang, Y. P., Schneider, J. K. and Sessanna, L. (2011). Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Journal of Aging Studies, 25, 436–444.
Chrisp, T. A., Tabberer, S. and Thomas, B. D. (2013). Bounded autonomy in deciding to seek medical help: carer role, the sick role and the case of dementia. Journal of Health Psychology, 18, 272–281.
Chrisp, T. A., Tabberer, S., Thomas, B. D. and Goddard, W. A. (2012). Dementia early diagnosis: triggers, supports and constraints affecting the decision to engage with the health care system. Aging & Mental Health, 16, 559–565.
Coetzee, R. H., Leask, S. J. and Jones, R. G. (2003). The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia. International Journal of Geriatric Psychiatry, 18, 169–173.
Cohen, C. A., Gold, D. P., Shulman, K. I., Wortley, J. T., McDonald, G. and Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: a prospective study. Gerontologist, 33, 714–720.
Cooper, C., Ketley, D. and Livingston, G. (2014). Systematic review and meta-analysis to estimate potential recruitment to dementia intervention studies. International Journal of Geriatric Psychiatry, 29, 515–525.
Ducharme, F., Couture, M. and Lamontagne, J. (2012). Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31, 197–218.
Elliott, B. A., Gessert, C. E. and Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251–258.
Heinrich, M., Neufeld, A. and Harrison, M. J. (2003). Seeking support: caregiver strategies for interacting with health personnel. Canadian Journal of Nursing Research, 35, 38–56.
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., Casarett, D. J. and Karlawish, J. H. (2005). Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-slowing medication? The American Journal of Geriatric Psychiatry, 13, 1014–1021.
Karlawish, J. H., Casarett, D., Propert, K. J., James, B. D. and Clark, C. M. (2002). Relationship between Alzheimer's disease severity and patient participation in decisions about their medical care. Journal of Geriatric Psychiatry and Neurology, 15, 68–72.
Kwon, S. H. and Tae, Y. S. (2012). Nursing home placement: the process of decision making and adaptation among adult children caregivers of demented parents in Korea. Asian Nursing Research, 6, 143–151.
Landau, R., Auslander, G. K., Werner, S., Shoval, N. and Heinik, J. (2011). Who should make the decision on the use of GPS for people with dementia? Aging & Mental Health, 15, 78–84.
Livingston, G.et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184.
Mitchell, S. L., Tetroe, J. and O’Connor, A. M. (2001). A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of the American Geriatrics Society, 49, 313–316.
Moise, P., Schwarzinger, M. and Um, M. (2004). Dementia Care in 9 OECD Countries: A Comparative Analysis. Paris: OECD.
Mukadam, N., Cooper, C. and Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26, 12–20.
Potkins, D., Bradley, S., Shrimanker, J., O’Brien, J., Swann, A. and Ballard, C. (2000). End of life treatment decisions in people with dementia: carers’ views and the factors which influence them. International Journal of Geriatric Psychiatry, 15, 1005–1008.
Sampson, E. L.et al. (2011). Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliative Medicine, 25, 197–209.
Samsi, K. and Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25, 949–961.
Shalowitz, D. I., Garrett-Mayer, E. and Wendler, D. (2006). The accuracy of surrogate decision makers: a systematic review. Archives of Internal Medicine, 166, 493–497.
Smebye, K. L., Kirkevold, M. and Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC. Health Services Research, 12, 241.
Sommerlad, A., Manela, M, Cooper, C, et al. (2014). START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention. BMJ Open, 4, e005273. doi:10.1136/bmjopen-2014-005273.
St-Amant, O.et al. (2012). Making care decisions in home-based dementia care: why context matters. Canadian Journal on Aging, 31, 423–434.
Stirling, C.et al. (2012). Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Medical Informatics and Decision Making, 12, 21.
Sugarman, J., Cain, C., Wallace, R. and Welsh-Bohmer, K. A. (2001). How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society, 49, 1110–1119.
Torke, A. M., Alexander, G. G. and Lantos, J. (2008). Substituted judgment: the limitations of autonomy in surrogate decision making. Journal of General Internal Medicine, 23, 1514–1517.
Torke, A. M., Schwartz, P. H., Holtz, L. R., Montz, K. and Sachs, G. A. (2013). Caregiver perspectives on cancer screening for persons with dementia: “why put them through it?.” Journal of the American Geriatrics Society, 61, 1309–1314.
Tyrell, J.Genin, N. and Myslinski, M. (2006). Freedom of choice and decision-making in health and social care: views of older patients with early-stage dementia and their carers. Dementia, 5, 479–502.
Wackerbarth, S. (1999). Modelling a dynamic decision process: supporting the decisions of caregivers of family members with dementia. Qualitative Health Research, 9, 294.
Walker, E. and Jane Dewar, B. (2001). How do we facilitate carers involvement in decision making? Journal of Advanced Nursing, 34, 329–337.
Wolfs, C. A.et al. (2012). Rational decision-making about treatment and care in dementia: a contradiction in terms? Patient Education and Counseling, 87, 43–48.
Wortmann, M. (2012). Dementia: a global health priority—highlights from an ADI and world health organization report. Alzheimer's Research & Therapy, 4, 40.