1. Cheong, K, Fisher, P, Goh, J, et al. Advance care planning in people with early cognitive impairment. BMJ Support Palliat Care. 2015;5:63-69.
Google Scholar | Crossref | Medline2. Guzmán, A, Gillanders, D, Stevenson, A, Ross, K. Psychosocial adjustment to mild cognitive impairment: the role of illness perceptions, cognitive fusion and cognitive impairment. Dementia 2020;20(1):464–484. doi: 10.1177/1471301219893862
Google Scholar | SAGE Journals3. Bryant, J, Sellars, M, Sinclair, C, et al. Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities. BMJ Support Palliat Care. 2021. doi: 10.1136/bmjspcare-2020-002767
Google Scholar | Crossref4. Carr, D, Luth, EA. Advance care planning: contemporary issues and future directions. Innovat Aging. 2017;1(1):1-10.
Google Scholar | Medline5. Boerner, K, Moorman, SM, Carr, D, Ornstein, KA. Insufficient advance care planning? Correlates of planning without personal conversations. J Gerontol B. 2021;76(1):104-108.
Google Scholar | Crossref | Medline6. Casey, DA, Walker, DM. The clinical realities of advance directives. Widener Law Rev. 2011;17:429.
Google Scholar7. Hague, SB, Moody, LE. A study of the public’s knowledge regarding advance directives. Nurs Econ. 1993;11(5):303-307.
Google Scholar | Medline8. Wendrich-van Dael, A, Bunn, F, Lynch, J, et al. Advance care planning for people living with dementia: an umbrella review of effectiveness and experiences. Int J Nurs Stud. 2020;107. doi: 10.1016/j.ijnurstu.2020.103576
Google Scholar | Crossref | Medline9. Dixon, J, Karagiannidou, M, Knapp, M. The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: a systematic review and critical discussion. J Pain Symptom Manage. 2018;55(1):132-150.
Google Scholar | Crossref | Medline10. Siconolfi, D, Bandini, J, Chen, E. Individual, interpersonal, and health care factors associated with informal and formal advance care planning in a nationally-representative sample of midlife and older adults. Patient Educ Couns.. 2020;104(7):1806–1813. doi: 10.1016/j.pec.2020.12.023
Google Scholar | Crossref | Medline11. Wallace, CL . Family communication and decision making at the end of life: a literature review. Palliat Support Care. 2015;13(3):815.
Google Scholar | Crossref | Medline | ISI12. Sudore, RL, Lum, HD, You, JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821-832.
Google Scholar | Crossref | Medline13. Doukas, DJ, Hardwig, J. Using the family covenant in planning end-of-life care: obligations and promises of patients, families, and physicians. J Am Geriatr Soc. 2003;51(8):1155-1158.
Google Scholar | Crossref | Medline | ISI14. Peterson, LJ, Hyer, K, Meng, H, et al. Discussing end-of-life care preferences with family: role of race and ethnicity. Res Aging. 2019;41(9):823-844.
Google Scholar | SAGE Journals | ISI15. Kale, MS, Ornstein, KA, Smith, CB, Kelley, AS. End-of-life discussions with older adults. J Am Geriatr Soc. 2016;64(10):1962-1967.
Google Scholar | Crossref | Medline16. Fetherstonhaugh, D, McAuliffe, L, Shanley, C, et al. Did I make the right decision?”: the difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia. Dementia. 2019;18(5):1601-1614.
Google Scholar | SAGE Journals | ISI17. Harrison Dening, K, King, M, Jones, L, et al. Advance care planning in dementia: do family carers know the treatment preferences of people with early dementia? PLoS One. 2016;11(7):e0159056.
Google Scholar | Crossref | Medline18. Piers, R, Albers, G, Gilissen, J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17(1):88.
Google Scholar | Crossref | Medline19. Moorman, SM, Carr, D. Spouses’ effectiveness as end-of-life health care surrogates: accuracy, uncertainty, and errors of overtreatment or undertreatment. Gerontologist. 2008;48(6):811-819.
Google Scholar | Crossref | Medline | ISI20. Bomba, P . Supporting the patient voice: building the foundation of shared decision-making. Generations. 2017;41(1):21-30.
Google Scholar21. Chiarchiaro, J, Buddadhumaruk, P, Arnold, RM, White, DB. Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc. 2015;12(10):1528-1533.
Google Scholar | Crossref | Medline22. Geshell, L, Kwak, J, Radhakrishnan, K. Perspectives and experiences of persons with dementia with advance care planning: an integrative literature review. J Geriatr Psychiatry Neurol. 2019;32(5):231-245.
Google Scholar | SAGE Journals | ISI23. Fried, TR, Zenoni, M, Iannone, L, et al. Engagement in advance care planning and surrogates’ knowledge of patients’ treatment goals. J Am Geriatr Soc. 2017;65(8):1712-1718.
Google Scholar | Crossref | Medline24. Fried, T, Zenoni, M, Iannone, L. A dyadic perspective on engagement in advance care planning. J Am Geriatr Soc. 2017;65(1):172-178.
Google Scholar | Crossref | Medline25. Scott, IA, Mitchell, GK, Reymond E, J, Daly, MP. Difficult but necessary conversations—the case for advance care planning. Med J Aust. 2013;199(10):662-666.
Google Scholar | Crossref | Medline | ISI26. Jutkowitz, E, Van Houtven, CH, Plassman, BL, Mor, V. Willingness to undergo a risky treatment to improve cognition among persons with cognitive impairment who received an amyloid PET scan. Alzheimer Dis Assoc Disord. 2020;34(1):1–9. doi: 10.1097/WAD.0000000000000338
Google Scholar | Crossref | Medline27. Baker, EF, Marco, CA. Advance directives in the emergency department. J Am Coll Emerg Phys Open. 2020;1(3):270-275.
Google Scholar | Crossref | Medline28. Doukas, DJ, Doukas, MA. Considering advance directives for oncology patients. Prim Care: Clin Off Pract. 1998;25(2):423-431.
Google Scholar | Crossref | Medline29. Obernberger, S . When love and abuse are not mutually exclusive: the need for government intervention. Issues L Med. 1996;12(4):355.
Google Scholar30. Rauscher, J, Nacinovich, MR. Concerns and wishes–communication of advance care planning. J Commun Healthc. 2012;5(1):1-2.
Google Scholar | Crossref31. Emanuel, LL, von Gunten, CF, Ferris, FD. Advance care planning. Arch Fam Med. 2000;9(10):1181.
Google Scholar | Crossref | Medline32. Welsh, KA, Breitner, JCS, Magruder-Habib, KM. Detection of dementia in the elderly using telephone screening of cognitive status. Cogn Behav Neurol. 1993;6(2):103-110.
Google Scholar33. Ofstedal, MB, Fisher, GG, Herzog, AR. Documentation of Cognitive Functioning Measures in the Health and Retirement Study; 2005. http://hrsonline.isr.umich.edu/sitedocs/userg/dr-006.pdf. Accessed September 9, 2020.
Google Scholar | Crossref34. Bedard, M, Molloy, DW, Squire, L, et al. The Zarit burden interview: a new short version and screening version. Gerontologist. 2001;41(5):652-657.
Google Scholar | Crossref | Medline | ISI35. Zarit, SH, Reever, KE, Bach-Peterson, J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655.
Google Scholar | Crossref | Medline | ISI36. Van Houtven, CH, Miller, KEM, O’Brien, EC, et al. Development and initial validation of the caregiver perceptions about communication with clinical team members (CAPACITY) measure. Med Care Res Rev. 2019;76(6):784-806.
Google Scholar | SAGE Journals | ISI37. Van Houtven, C, Lippmann, S, Belanger, E, et al. Measurement properties of the CAPACITY instrument to assess perceived communication with the health care team among care partners of patients with cognitive impairment. Med Care. 2020;58(9):842-849. doi: 10.1097/MLR.0000000000001363.
Google Scholar | Crossref | Medline38. Gallo, JJ, Breitner, JC. Alzheimer’s disease in the NAS-NRC registry of aging twin veterans, IV. Performance characteristics of a two-stage telephone screening procedure for Alzheimer’s dementia. Psychol Med. 1995;25(6):1211-1219.
Google Scholar | Crossref | Medline | ISI39. Brandt, J, Welsh, KA, Breitner, JC, Folstein, MF, Helms, M, Christian, JC. Hereditary influences on cognitive functioning in older men. A study of 4000 twin pairs. Arch Neurol. 1993;50(6):599-603.
Google Scholar | Crossref | Medline40. McHugh, ML . Interrater reliability: the kappa statistic. Biochem Med. 2012;22(3):276-282.
Google Scholar | Crossref | Medline | ISI41. Inoue, M, Tompkins, C, Scruggs, K, Robles, J. Advance directives information delivery in medicare/Medicaid-funded agencies: an exploratory study. J Soc Work End Life Palliat Care. 2018;14(2-3):177-193.
Google Scholar | Crossref | Medline42. Davies, N, Schiowitz, B, Rait, G, Vickerstaff, V, Sampson, EL. Decision aids to support decision-making in dementia care: a systematic review. Int Psychogeriatr. 2019;31(10):1403-1419.
Google Scholar | Crossref | Medline43. Fried, TR, Redding, CA, Robbins, ML, O’Leary, JR, Iannone, L. Agreement between older persons and their surrogate decision-makers regarding participation in advance care planning. J Am Geriatr Soc. 2011;59(6):1105-1109.
Google Scholar | Crossref | Medline44. Jung, MY, Matthews, AK. A systematic review of clinical interventions facilitating end-of-life communication between patients and family caregivers. Am J Hosp Palliat Med 2020;38(2):180–190. doi: 10.1177/1049909120929323
Google Scholar | SAGE Journals45. Anderson, RJ, Bloch, S, Armstrong, M, et al. Communication between healthcare professionals and relatives of patients approaching the end-of-life: a systematic review of qualitative evidence. Palliat Med. 2019;33(8):926-941.
Google Scholar | SAGE Journals | ISI46. Song, MK, Ward, SE, Hepburn, K, et al. Can persons with dementia meaningfully participate in advance care planning discussions? A mixed-methods study of spirit. J Palliat Med. 2019 Nov 1;22(11):1410-1416.
Google Scholar | Crossref | Medline47. Van den Block, L . Advancing research on advance care planning in dementia. Palliat Med. 2019;33(3):259-261.
Google Scholar | SAGE Journals | ISI48. Read, ST, Toye, C, Wynaden, D. The participation of people with dementia in the planning of their care and support: an integrative literature review. Dementia. 2020;19(3):691-707.
Google Scholar | SAGE Journals | ISI