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Assessment, diagnosis, care and support for people with dementia and their carers (SIGN)
Healthcare Improvement Scotland
  1. Cunningham EL, McGuinness B, Herron B, Passmore Dementia. Ulster Med J 2015;84(2):79-87.
  2. Scottish Mental Health: Dementia. 2021. Available from url: https://www.gov.scot/policies/mental-health/dementia/
  3. World Health Dementia key facts 2021. Available from url: www.who.int/news-room/fact-sheets/detail/dementia
  4. GBD 2019 Dementia Forecasting Collaborators. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study Lancet Public Health 2022;7(2):e105-e25.
  5. King’s College London and London School of Economics, Prince M, Knapp M, Guerchet M, McCrone P, Prina M, et al. Dementia UK: Second edition –    [cited  19  Jun 2023]. Available from url: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf
  6. Loy CT, Schofield PR, Turner AM, Kwok Genetics of dementia. Lancet 2014;383(9919):828-40.
  7. Livingston G, Huntley J, Sommerlad  A,  Ames  D,  Ballard C, Banerjee S, et Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet 2020;396(10248):413-46.
  8. Lewis F, Schaffer SK, Sussex J, O'Neill P, Cockcroft L. The Trajectory of Dementia in the UK – Making a 2014. Available from url: https://www.alzheimersresearchuk.org/wp-content/uploads/2015/01/OHE-report-Full.pdf
  9. Alzheimer Charter of Rights for people with dementia and their carers in Scotland.; 2009. [cited 17th August 2023]. Available from url: https://www.alzscot.org/charter
  10. Scottish Dementia in Scotland: Everyone’s Story. 2023. Available from url: https://www.gov.scot/publications/new-dementia-strategy-scotland-everyones-story/ 
  11. Scottish Government. Dementia - health and social services staff: framework - Promoting Excellence 2021. Available from url: https://www.gov.scot/publications/promoting-excellence-2021-framework-health-social-services-staff-working-people-dementia-families-carers/
  12. Scottish Standards of Care for Dementia in Scotland: Action to support the change programme, Scotland's National Dementia Strategy. [cited 17th August 2023]. Available from url: https://www.gov.scot/publications/standards-care-dementia-scotland-action-support-change-programme-scotlands-national-dementia-strategy/
  13. Scottish Parliament. Carers (Scotland) Act 2016. 2016;
  14. Public Health Scotland. Dementia. 2021. Available from url: http://www.healthscotland.scot/health-topics/dementia
  15. NHS Health Scotland. Dementia and equality – meeting the challenge in Recommendations of the National Advisory Group on Dementia and Equality.; 2016. Available from url: http://www.healthscotland.scot/media/1226/27797-dementia-and-equality_aug16_english.pdf
  16. Waymont JMJ, Fullerton N, Borthwick A, Pennington C, Ritchie A Scoping Exercise of Clinical Assessment and Management of Cognitive Complaints and Neurodegenerative Disease in Scotland. 2021. Available from url: www.brainhealth. scot/_files/ugd/d90149_50e1ed1ef9d64db2a074afc27927af bd.pdf
  17. Stamou V, Fontaine J, O'Malley M, Jones B, Gage H, Parkes J, et al. The nature of positive post-diagnostic support as experienced by people with young onset Aging Ment Health 2021;25(6):1125-33.
  18. Stamou V, La Fontaine J, O’Malley M, Jones B, Parkes J, Carter J, et al. Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela project. Health Soc Care Community 2022;30(1):142-53.
  19. Stamou V, Oyebode J, La Fontaine J, O’Malley M, Parkes J, Carter Good practice in needs-based post-diagnostic support for people with young onset dementia: findings from the Angela Project. Ageing & Society 2023:1-24.
  20. Healthcare Improvement Scotland. Focus on Diagnosis and Post-Diagnostic Support. 2021. [cited 19 Jun 2023]. Available from url: https://ihub.scot/improvement-programmes/focus-on-dementia/improving-diagnosis-and- post-diagnostic-support/
  21. Healthcare Improvement Scotland. Focus on Dementia Care Co-ordination 2021. [cited 19 Jun 2023]. Available from url: https://ihub.scot/improvement-programmes/dementia/care-co-ordination/
  22. Dementia: assessment, management and support for people living with dementia and their carers NICE guideline [NG97]. 2018. [cited 19 Jun 2023]. Available from url: https://www.nice.org.uk/guidance/ng97
  23. Poblador-Plou B, Calderón-Larrañaga A, Marta-Moreno J, Hancco-Saavedra J, Sicras-Mainar A, Soljak M, et Comorbidity of dementia: a cross-sectional study of primary care older patients. BMC Psychiatry 2014;14:84.
  24. Browne J, Edwards DA, Rhodes KM, Brimicombe DJ, Payne Association of comorbidity and health service usage among patients with dementia in the UK: a population-based study. BMJ Open 2017;7(3):e012546.
  25. Alzheimers Research UK. Are we ready to deliver disease modifying treatments? Old Age Psychiatrists’ views on diagnosing and treating Alzheimer’s disease before 2021. [cited 19 Jun 2023]. Available from url: https://www. alzheimersresearchuk.org/wp-content/uploads/2021/05/ARUK-Are-we-ready-to-deliver-disease-modifying-treatments_25May21.pdf
  26. World Health Organisation. Dementia. ICD-11 for Mortality and Morbidity Statistics. 2023. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/lm/en#/http://id.who.int/icd/entity/546689346
  27. World Health Organisation. 6D80 Dementia due to Alzhimers Disease. 2023. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f795022044
  28. Albert MS, DeKosky ST, Dickson D, Dubois B, Feldman HH, Fox NC, et al. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement 2011;7(3):270-9.
  29. Mirra Neuropathological assessment of Alzheimer's disease: the experience of the Consortium to Establish a Registry for Alzheimer's Disease. Int Psychogeriatr 1997;9 Suppl 1:263-8; discussion 9-72.
  30. World Health 6 D 81  Dementia  due to cerebrovascular disease. 2023. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/ http%3a%2f%2fid.who.int%2ficd%2fentity%2f1365258270
  31. World Health Organisation. 6D82 Dementia due to Lewy body disease. 2023. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who
  32. McKeith IG, Boeve BF, Dickson DW, Halliday G, Taylor JP, Weintraub D, et al. Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Neurology 2017;89(1):88-100.
  33. World Health Organisation. 6D83 Frontotemporal dementia. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f831337417
  34. World Health Organisation. 6D8Z Dementia, unknown or unspecified 2023. [cited 7 Sep 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f546689346%2fmms%2funspecified
  35. World Health 6D80.2 Alzheimer disease dementia, mixed type, with cerebrovascular disease. 2023. [cited 7th September 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1543494610
  36. World Health 6D80.3 Alzheimer disease dementia, mixed type, with other nonvascular aetiologies. 2023. [cited 7th September 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.whoint%2ficd%2fentity%2f1072662343
  37. Dementia: What is it? [cited 17th August 2023]. Available from url: https://cks.nice.org.uk/topics/dementia/background-information/definition/
  38. Holmerova I, Waugh A, Macrae R, Veprkova R, Sandvide Å, Hanson E, et al. Dementia Palliare Best Practice Statement 2016. [cited 19 Jun 2023]. Available from url: http://dementia.uws.ac.uk/documents/2015/12/dementia-palliare-best-practice-statement-web.pdf/
  39. Tolson D, Holmerova I, Macrae R, Waugh A, Hvalič-Touzery S, de Abreu W, et al. Improving Advanced Dementia Care: An Interprofessional Palliare Learning Framework. J Am Med Dir Assoc 2017;18(7):561-3.
  40. Scottish Government. Scotland’s Carers. 2015. [cited 19 Jun 2023]. Available from url:  https://www.gov.scot/publications/scotlands-carers/
  41. Fernandes B, Goodarzi Z, Holroyd-Leduc J. Optimizing the diagnosis and management of dementia within primary care: a systematic review of systematic BMC Family Practice 2021;22(1):166.
  42. Creavin ST, Wisniewski S, Noel-Storr AH, Trevelyan CM, Hampton T, Rayment D, et al. Mini-Mental State Examination (MMSE) for the detection of dementia in clinically unevaluated people aged 65 and over in community and primary care populations. Cochrane Database Syst Rev 2016; Issue 1.
  43. Chan CC, Fage BA, Burton JK, Smailagic N, Gill SS, Herrmann N, et Mini-Cog for the detection of dementia within a secondary care setting. Cochrane Database Syst Rev 2021; Issue 7.
  44. Seitz DP, Chan CC, Newton HT, Gill SS, Herrmann N, Smailagic N, et Mini-Cog for the detection of dementia within a primary care setting. Cochrane Database Syst Rev 2021; Issue 7.
  45. Beishon LC, Batterham AP, Quinn TJ, Nelson CP, Panerai RB, Robinson T, et al. Addenbrooke’s Cognitive Examination III (ACE‐III) and mini‐ACE for the detection of dementia and mild cognitive impairment. Cochrane Database of Systematic Reviews 2019; Issue 12.
  46. Carpenter CR, Banerjee J, Keyes D, Eagles D, Schnitker L, Barbic D, et al. Accuracy of Dementia Screening Instruments in Emergency Medicine: A Diagnostic Meta-analysis. Academic Emergency Medicine 2019;26(2):226-45.
  47. Davis DH, Creavin ST, Yip JL, Noel-Storr AH, Brayne C, Cullum Montreal Cognitive Assessment for the detection of dementia. Cochrane Database Syst Rev 2021; Issue 7.
  48. Park J, Jeong E, Seomun The clock drawing test: A systematic review and meta-analysis of diagnostic accuracy. Journal of Advanced Nursing 2018;74(12):2742-54.
  49. Nielsen TR, Segers K, Vanderaspoilden V, Bekkhus-Wetterberg P, Bjørkløf GH, Beinhoff U, et al. Validation of the Rowland Universal Dementia Assessment Scale (RUDAS) in a multicultural sample across five Western European countries: diagnostic accuracy and normative data. Int Psychogeriatr 2019;31(2):287-96.
  50. Burns A, Harrison JR, Symonds C, Morris J. A novel hybrid scale for the assessment of cognitive and executive function: The Free-Cog. International Journal of Geriatric Psychiatry 2021;36(4):566-72.
  51. Larner AJ. Free-Cog: Pragmatic Test Accuracy Study and Comparison with Mini-Addenbrooke's Cognitive Dementia & Geriatric Cognitive Disorders 2019;47(4-6): 254-63.
  52. Basic D, Khoo A, Conforti D, Rowland J, Vrantsidis F, LoGiudice D, et Rowland Universal Dementia Assessment Scale, Mini- Mental State Examination and General Practitioner Assessment of Cognition in a multicultural cohort of community-dwelling older persons with early dementia. Australian Psychologist 2009;44(1):40-53.
  53. Brodaty H, Connors MH, Loy C, Teixeira-Pinto A, Stocks N, Gunn J, et Screening for Dementia in Primary Care: A Comparison of the GPCOG and the MMSE. Dement Geriatr Cogn Disord 2016;42(5-6):323-30.
  54. Brodaty H, Pond D, Kemp NM, Luscombe G, Harding L, Berman K, et The GPCOG: a new screening test for dementia designed for general practice. J Am Geriatr Soc 2002;50(3):530-4.
  55. Hendry K, Green C, McShane R, Noel-Storr AH, Stott DJ, Anwer S, et al. AD-8 for detection of dementia across a variety of healthcare Cochrane Database of Systematic Reviews 2019; 2019: Issue 3.
  56. Burton JK, Fearon P, Noel-Storr AH, McShane R, Stott DJ, Quinn Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) for the detection of dementia within a general practice (primary care) setting. Cochrane Database Syst Rev 2021; Issue 7.
  57. Burton JK, Fearon P, Noel-Storr AH, McShane R, Stott DJ, Quinn Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) for the detection of dementia within a secondary care setting. Cochrane Database Syst Rev 2021; Issue 7.
  58. Beishon LC, Elliott E, Hietamies TM, Mc Ardle R, O'Mahony A, Elliott AR, et Diagnostic test accuracy of remote, multidomain cognitive assessment (telephone and video call) for dementia. Cochrane Database Syst Rev 2022; Issue 4.
  59. Elliott E, Green C, Llewellyn DJ, Quinn Accuracy of Telephone-Based Cognitive Screening Tests: Systematic Review and Meta-Analysis. Curr Alzheimer Res 2020;17(5):460-71.
  60. Lesman-Segev OH, La Joie R, Iaccarino L, Lobach I, Rosen  HJ, Seo SW, et al. Diagnostic Accuracy of Amyloid versus (18) F-Fluorodeoxyglucose Positron  Emission  Tomography in Autopsy-Confirmed Dementia. Ann Neurol 2021;89(2): 389-401.
  61. Dooley J, Bailey C, McCabe Communication in healthcare interactions in dementia: A systematic review of observational studies. International Psychogeriatrics 2015;27(8):1277-300.
  62. Khanassov V, Vedel Family Physician-Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review. Annals of family medicine 2016;14(2):166-77.
  63. Yates J, Stanyon M, Samra R, Clare Challenges in disclosing and receiving a diagnosis of dementia: A systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. International Psychogeriatrics 2021;33(11):1161-92.
  64. Champlin The informal caregiver’s lived experience of being present with a patient who receives a diagnosis of dementia: A phenomenological inquiry. Dementia (London) 2020;19(2): 375-96.
  65. Scottish Intercollegiate Guidelines Network (SIGN). Risk reduction and management of Edinburgh: SIGN; 2019. (SIGN publication no. 157). [cited 20 Jun 2023]. Available from url: https://www.sign.ac.uk/our-guidelines/risk-reduction-and-management-of-delirium/
  66. Alothman D, Card T, Lewis S, Tyrrell E, Fogarty AW, Marshall CR. Risk of Suicide After Dementia Diagnosis. JAMA Neurol 2022;79(11):1148-54.
  67. Mason SE, McShane R, Ritchie Diagnostic tests for Alzheimer's disease: rationale, methodology, and challenges. Int J Alzheimers Dis 2010;2010:972685.
  68. Ritchie C, Smailagic N, Noel‐Storr AH, Takwoingi Y, Flicker L, Mason SE, et al. Plasma and cerebrospinal fluid amyloid beta for the diagnosis of Alzheimer's disease dementia and other dementias in people with mild cognitive impairment (MCI). Cochrane Database of Systematic Reviews 2014; Issue 6.
  69. Kazee AM, Eskin TA, Lapham LW, Gabriel KR, McDaniel KD, Hamill RW, et al. The neuropathologic findings from a group of 123 patients who have come to autopsy from the Rochester Alzheimer Disease Project (RADP). New York University of Rochester; 1993.
  70. Shetty A, Bickle, Positron emission tomography. Radiopaedia.org; 2022. [cited 10 Jun 2023]. Available from url: https://radiopaedia.org/articles/positron-emission-tomography?lang=us
  71. Johnson KA, Minoshima S, Bohnen NI, Donohoe KJ, Foster NL, Herscovitch P, et al. Appropriate use criteria for amyloid PET: a report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association. Alzheimers Dement 2013;9(1):e-1-16.
  72. Kolanko MA, Win Z, Loreto F, Patel N, Carswell C, Gontsarova A, et al. Amyloid PET imaging in clinical practice. Pract Neurol 2020;20(6):451-62.
  73. Blazhenets G, Ma Y, Sörensen A, Schiller F, Rücker G, Eidelberg D, et al. Predictive Value of (18)F-Florbetapir and (18)F-FDG PET for Conversion from Mild Cognitive Impairment to Alzheimer Dementia. J Nucl Med 2020;61(4):597-603.
  74. Yeo JM, Waddell B, Khan Z, Pal S. A systematic review and meta-analysis of (18)F-labeled amyloid imaging in Alzheimer's disease. Alzheimers Dement (Amst) 2015;1(1):5-13.
  75. Morris E, Chalkidou A, Hammers A, Peacock J, Summers J, Keevil S. Diagnostic accuracy of (18)F amyloid PET tracers for the diagnosis of Alzheimer's disease: a systematic review and meta-analysis. Eur J Nucl Med Mol Imaging 2016;43(2):374-85.
  76. Ramusino MC, Perini G, Altomare D, Barbarino P, Weidner W, Porro SG, et al. Outcomes of clinical utility in amyloid-PET studies: state of art and future perspectives. Eur J Nucl Med Mol Imaging 2021;48(7):2157-68.
  77. Fantoni ER, Chalkidou A, O'Brien JT, Farrar G, Hammers A Systematic Review and Aggregated Analysis on the Impact of Amyloid PET Brain Imaging on the Diagnosis, Diagnostic Confidence, and Management of Patients being Evaluated for Alzheimer's Disease. Journal of Alzheimer's Disease 2018;63(2):783-96.
  78. de Wilde A, van der Flier WM, Pelkmans W, Bouwman F, Verwer J, Groot C, et al. Association of Amyloid Positron Emission Tomography With Changes in Diagnosis and Patient Treatment in an Unselected Memory Clinic Cohort: The ABIDE Project. JAMA Neurol 2018;75(9):1062-70.
  79. Leuzy A, Savitcheva I, Chiotis K, Lilja J, Andersen P, Bogdanovic N, et al. Clinical impact of [(18)F]flutemetamol PET among memory clinic patients with an unclear Eur J Nucl Med Mol Imaging 2019;46(6):1276-86.
  80. Matsuda H, Okita K, Motoi Y, Mizuno T, Ikeda M, Sanjo N, et al. Clinical impact of amyloid PET using (18)F-florbetapir in patients with cognitive impairment and suspected Alzheimer's disease: a multicenter Ann Nucl Med 2022;36(12):1039- 49.
  81. Rabinovici GD, Gatsonis C, Apgar C, Chaudhary K, Gareen  I, Hanna L, et al. Association of Amyloid Positron Emission Tomography With Subsequent Change in Clinical Management Among Medicare Beneficiaries With Mild Cognitive Impairment or Dementia. JAMA 2019;321(13):1286-94.
  82. Triviño-Ibáñez EM, Sánchez-Vañó R, Sopena-Novales P, Romero-Fábrega JC, Rodríguez-Fernández A, Carnero Pardo C, et al. Impact of amyloid-PET in daily clinical management of patients with cognitive impairment fulfilling appropriate use Medicine (Baltimore) 2019;98(29):e16509.
  83. Carswell CJ, Win Z, Muckle K, Kennedy A, Waldman A, Dawe G, et al. Clinical utility of amyloid PET imaging with (18) F-florbetapir: a retrospective study of 100 J Neurol Neurosurg Psychiatry 2018;89(3):294-9.
  84. The Royal College of Radiologists. IR(MER)R Implications for clinical practice in diagnostic imaging, interventional radiology and diagnostic nuclear medicine 2020. [cited 10 Jun 2023]. Available from url: https://www.rcr.ac.uk/our-services/all-our-publications/clinical-radiology-publications/ir-me-r-implications-for-clinical-practice-in-diagnostic-imaging-interventional-radiology-and-diagnostic-nuclear-medicine/
  85. Administration of Radioactive Substances Advisory Committee (ARSAC). Notes for guidance on the clinical administration of radiopharmaceuticals and use of sealed radioactive sources. 2023. [cited 20 Jun 2023]. Available from url: https://www.gov.uk/government/publications/arsac-notes-for-guidance
  86. Hornberger J, Bae J, Watson I, Johnston J, Happich Clinical and cost implications of amyloid beta detection with amyloid beta positron emission tomography imaging in early Alzheimer's disease - the case of florbetapir. Curr Med Res Opin 2017;33(4):675-85.
  87. Schindler Fluid Biomarkers in Dementia Diagnosis. Continuum (Minneap Minn) 2022;28(3):822-33.
  88. Müller EG, Edwin TH, Stokke C,  Navelsaker  SS,  Babovic A, Bogdanovic N, et Amyloid-β PET-Correlation with cerebrospinal fluid biomarkers and prediction of Alzheimer´s disease diagnosis in a memory clinic. PLoS One 2019;14(8):e0221365.
  89. Seeburger JL, Holder DJ, Combrinck M, Joachim C, Laterza O, Tanen M, et al. Cerebrospinal fluid biomarkers distinguish postmortem-confirmed Alzheimer's disease from other dementias and healthy controls in the OPTIMA cohort. J Alzheimers Dis 2015;44(2):525-39.
  90. Palmqvist S, Insel PS, Stomrud E, Janelidze S, Zetterberg H, Brix B, et Cerebrospinal fluid and plasma biomarker trajectories with increasing amyloid deposition in Alzheimer's disease. EMBO Mol Med 2019;11(12):e11170.
  91. Ritchie C, Smailagic N, Noel-Storr AH, Ukoumunne O, Ladds EC, Martin CSF tau and the CSF tau/ABeta ratio for the diagnosis of Alzheimer's disease dementia and other dementias in people with mild cognitive impairment (MCI). Cochrane Database Syst Rev 2017; Issue 3.
  92. Zwan M, van Harten A, Ossenkoppele R, Bouwman F, Teunissen C, Adriaanse S, et Concordance between cerebrospinal fluid biomarkers and [11C]PIB PET in a memory clinic cohort. J Alzheimers Dis 2014;41(3):801-7.
  93. Kokkinou M, Beishon LC, Smailagic N, Noel-Storr AH, Hyde C, Ukoumunne O, et al. Plasma and cerebrospinal fluid ABeta42 for the differential diagnosis of Alzheimer's disease dementia in participants diagnosed with any dementia subtype in a specialist care setting. Cochrane Database of Systematic Reviews 2021; Issue 2.
  94. Olsson B, Lautner R, Andreasson U, Öhrfelt A, Portelius E, Bjerke M, et CSF and blood biomarkers for the diagnosis of Alzheimer's disease: a systematic review and meta-analysis. Lancet Neurol 2016;15(7):673-84.
  95. Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangalos EG, Kokmen Mild cognitive impairment: clinical characterization and outcome. Arch Neurol 1999;56(3):303-8.
  96. Petersen Mild cognitive impairment as a diagnostic entity. J Intern Med 2004;256(3):183-94.
  97. Matthews FE, Stephan BC, McKeith IG, Bond J, Brayne Two- year progression from mild cognitive impairment to dementia: to what extent do different definitions agree? J Am Geriatr Soc 2008;56(8):1424-33.
  98. Shaw LM, Arias J, Blennow K, Galasko D, Molinuevo JL, Salloway S, et Appropriate use criteria for lumbar puncture and cerebrospinal fluid testing in the diagnosis of Alzheimer's disease. Alzheimers Dement 2018;14(11):1505-21.
  99. Duits FH, Martinez-Lage P, Paquet C, Engelborghs S, Lleó A, Hausner L, et al. Performance and complications of lumbar puncture in memory clinics: Results of the multicenter lumbar puncture feasibility Alzheimers Dement 2016;12(2):154- 63.
  100. Peskind ER, Riekse R, Quinn JF, Kaye J, Clark CM, Farlow MR, et Safety and acceptability of the research lumbar puncture. Alzheimer Dis Assoc Disord 2005;19(4):220-5.
  101. Hampel H, Shaw LM, Aisen P, Chen C, Lleó A, Iwatsubo T, et State-of-the-art of lumbar puncture and its place in the journey of patients with Alzheimer's disease. Alzheimers Dement 2022;18(1):159-77.
  102. Engelborghs S, Niemantsverdriet E, Struyfs H, Blennow K, Brouns R, Comabella M, et Consensus guidelines for lumbar puncture in patients with neurological diseases. Alzheimers Dement (Amst) 2017;8:111-26.
  103. Lee SA, Sposato LA, Hachinski V, Cipriano Cost-effectiveness of cerebrospinal biomarkers for the diagnosis of Alzheimer's disease. Alzheimers Res Ther 2017;9(1):18.
  104. Scottish NHS Scotland performance against LDP standards. 2022. [cited 20 Jun 2023]. Available from url: https://www.gov.scot/publications/nhsscotland-performance-against-ldp-standards/pages/dementia-post-diagnostic-support/
  105. Healthcare Improvement Scotland. A Quality Improvement Framework for Dementia Post-Diagnostic Support in 2021. [cited 20 Jun 2023]. Available from url: https://ihub.scot/improvement-programmes/focus-on-dementia/improving-diagnosis-and-post-diagnostic-support/a-quality-improvement-framework-for-dementia-post-diagnostic-support-in-scotland/
  106. Alzheimer 5 Pillar Model of Post Diagnostic Support. 2015. [cited 20 Jun 2023]. Available from url: https://www.alzscot.org/our-work/campaigning-for-change/current-campaigns/5-pillar-model-of-post-diagnostic-support
  107. Bunn F, Goodman C, Sworn K, Rait G, Brayne C, Robinson L, et Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies. PLoS Med 2012;9(10):e1001331.
  108. Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health 2018;33(11):1321-42.
  109. Sivananthan SN, Puyat JH, McGrail KM. Variations in self- reported practice of physicians providing clinical care to individuals with dementia: A systematic review. Journal of the American Geriatrics Society 2013;61(8):1277-85.
  110. Low L-F, Swaffer K, McGrath M, Brodaty H. Do people with early stage dementia experience prescribed disengagement? A systematic review of qualitative studies. International Psychogeriatrics 2018;30(6):807-31.
  111. Prorok JC, Horgan S, Seitz Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies. CMAJ 2013;185(14):E669-80.
  112. Bunn F, Sworn K, Brayne C, Iliffe S, Robinson L, Goodman C. Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study. Health expectations : an international journal of public participation in health care and health policy 2015;18(5):740-53.
  113. Chirico I, Ottoboni G, Valente M, Chattat Children and young people's experience of parental dementia: A systematic review. International Journal of Geriatric Psychiatry 2021;36(7):975- 92.
  114. Francis N, Hanna Informal carer experiences of UK dementia services - a systematic review. Journal of psychiatric and mental health nursing. 2022;29(1):116-29.
  115. Gregg JE, Simpson J, Nilforooshan R, Perez-Algorta What is the relationship between people with dementia and their caregiver's illness perceptions post-diagnosis and the impact on help-seeking behaviour? A systematic review. Dementia (London) 2021;20(7):2597-617.
  116. Macdonald M, Martin-Misener R, Weeks L, Helwig M, Moody E, MacLean H. Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review. JBI Evid Synth 2019;18(4):647-703.
  117. Greenwood N, Smith The experiences of people with young- onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas 2016;92:102-9.
  118. Sansoni J, Duncan C, Grootemaat P, Capell J, Samsa P, Westera A. Younger Onset Dementia. American Journal of Alzheimer's Disease & Other Dementias 2016;31(8):693-705.
  119. von Kutzleben M, Schmid W, Halek M, Holle B, Bartholomeyczik S. Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & mental health 2012;16(3):378-90
  120. Millenaar JK, Bakker C, Koopmans RT, Verhey FR, Kurz A, de Vugt ME. 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 2016;31(12):1261-76
  121. Spreadbury JH, Kipps C. Measuring younger onset dementia: What the qualitative literature reveals about the 'lived experience' for patients and caregivers. Dementia (London) 2019;18(2):579-98.
  122. Nunnemann S, Kurz A, Leucht S, Diehl-Schmid J. Caregivers of patients with frontotemporal lobar degeneration: A review on burden, problems, needs and interventions. Dementia and Geriatric Cognitive Disorders 2012;24(9):1368-86.
  123. Parker M, Barlow S, Hoe J, Aitken L. Persistent barriers and facilitators to seeking help for a dementia diagnosis: A systematic review of 30 years of the perspectives of carers and people with dementia. International Psychogeriatrics 2020;32(5):611-34.
  124. O'Malley M, Carter J, Stamou V, LaFontaine J, Oyebode J, Parkes J. Receiving a diagnosis of young onset dementia: a scoping review of lived experiences. Aging & mental health 2021;25(1):1-12.
  125. Young Dementia Network. Young onset dementia pathway. Diagnosis and support for people with young onset dementia and their families. 2022. [cited 20 Jun 2023]. Available from url: https://www.youngdementianetwork.org/wp-content/uploads/2022/03/Young-onset-dementia-pathway-03-2022-FINAL.pdf
  126. James IA, Reichelt FK, Duffy F, Moniz-Cook E. Getting our terminology right: The power of language. Journal of Dementia Care 2021;29(2):24-7.
  127. Afram B, Stephan A, Verbeek H, Bleijlevens MH, Suhonen R, Sutcliffe C, et al. Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. J Am Med Dir Assoc 2014;15(2):108-16.
  128. Hope T, Keene J, Gedling K, Fairburn CG, Jacoby R. Predictors of institutionalization for people with dementia living at home with a carer. Int J Geriatr Psychiatry 1998;13(10):682-90.
  129. Sampson EL, White N, Leurent B, Scott S, Lord K, Round J, et al. Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study. Br J Psychiatry 2014;205(3):189-96.
  130. James I, Stephenson M. Behaviour that challenges us: The Newcastle support model. Journal of Dementia Care 2007;15(5):19-22.
  131. NHS Education for Scotland. Psychology and psychological interventions in Dementia. [cited 7 Sep 2023]. Available from url: https://www.nes.scot.nhs.uk/our-work/dementiapsychology-and-psychological-interventions/#trainingprogrammes2
  132. Dunn R, Moniz-Cook E. Evaluating interventions for Behaviours that Challenge (BtC) in dementia care–what instruments do specialist practitioners working in the UK use? FPOP Bulletin. 2019;148(5):51-61.
  133. Halek M, Holle D, Bartholomeyczik S. Development and evaluation of the content validity, practicability and feasibility of the Innovative dementia-oriented Assessment system for challenging behaviour in residents with dementia. BMC Health Serv Res 2017;17(1):554.
  134. Gitlin LN, Marx KA, Stanley IH, Hansen BR, Van Haitsma KS. Assessing neuropsychiatric symptoms in people with dementia: a systematic review of measures. Int Psychogeriatr 2014;26(11):1805-48.
  135. Watt JA, Goodarzi Z, Veroniki AA, Nincic V, Khan PA, Ghassemi M, et al. Comparative Efficacy of Interventions for Aggressive and Agitated Behaviors in Dementia: A Systematic Review and Network Meta-analysis. Ann Intern Med 2019;171(9):633-42.
  136. Brasure M, Jutkowitz E, Fuchs E, Nelson VA, Kane RA, Shippee T, et al. Nonpharmacologic Interventions for Agitation and Aggression in Dementia. Comparative Effectiveness Review No. 177. Rockville; 2016. [cited 21 Jun 2023]. Available from url: https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/dementia-agitation-aggression_research.pdf
  137. Deshmukh SR, Holmes J, Cardno A. Art therapy for people with dementia. Cochrane Database Syst Rev 2018; Issue 9.
  138. Ballard C, Corbett A, Orrell M, Williams G, Moniz-Cook E, Romeo R, et al. Impact of person-centred care training and personcentred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A clusterrandomised controlled trial. PLoS Med 2018;15(2):e1002500.
  139. Lichtwarck B, Selbaek G, Kirkevold Ø, Rokstad AMM, Benth J, Lindstrøm JC, et al. Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms: A Cluster Randomized Controlled Trial. Am J Geriatr Psychiatry 2018;26(1):25-38.
  140. Livingston G, Barber J, Marston L, Stringer A, Panca M, Hunter R, et al. Clinical and cost-effectiveness of the Managing Agitation and Raising Quality of Life (MARQUE) intervention for agitation in people with dementia in care homes: a singleblind, cluster-randomised controlled trial. Lancet Psychiatry 2019;6(4):293-304.
  141. Surr CA, Holloway I, Walwyn RE, Griffiths AW, Meads D, Kelley R, et al. Dementia Care Mapping™ to reduce agitation in care home residents with dementia: the EPIC cluster RCT. Health Technol Assess 2020;24(16):1-172.
  142. Moniz Cook ED, Swift K, James I, Malouf R, De Vugt M, Verhey F. Functional analysis-based interventions for challenging behaviour in dementia. Cochrane Database of Systematic Reviews 2012; Issue 2.
  143. Möhler R, Renom A, Renom H, Meyer G. Personally tailored activities for improving psychosocial outcomes for people with dementia in community settings. Cochrane Database of Systematic Reviews 2020; Issue 8.
  144. Möhler R, Renom A, Renom H, Meyer G. Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care. Cochrane Database of Systematic Reviews 2018; Issue 2.
  145. Lu S, Zhang AY, Liu T, Choy JCP, Ma MSL, Wong G, et al. Degree of personalisation in tailored activities and its effect on behavioural and psychological symptoms and quality of life among people with dementia: a systematic review and metaanalysis. BMJ Open 2021;11(11):e048917
  146. Forbes D, Blake CM, Thiessen EJ, Peacock S, Hawranik Light therapy for improving cognition, activities of daily living, sleep, challenging behaviour, and psychiatric disturbances in dementia. Cochrane Database Syst Rev 2014; Issue 2.
  147. Brown A, O'Connor S. Mobile health applications for people with dementia: a systematic review and synthesis of qualitative Inform Health Soc Care 2020;45(4):343-59.
  148. Chou HK, Yan SH, Lin IC, Tsai MT, Chen CC, Woung A pilot study of the telecare medical support system as an intervention in dementia care: the views and experiences of primary caregivers. J Nurs Res 2012;20(3):169-80.
  149. Lindauer A, Croff R, Mincks K, Mattek N, Shofner SJ, Bouranis N, et al. “It Took the Stress out of Getting Help”: The STAR-C- Telemedicine Mixed Methods Pilot. Care Wkly 2018;2:7-14.
  150. Mehrabian S, Extra J, Wu YH, Pino M, Traykov L, Rigaud AS. The perceptions of cognitively impaired patients and their caregivers of a home telecare system. Med Devices (Auckl) 2014;8:21-9.
  151. Schaller S, Marinova-Schmidt V, Setzer M, Kondylakis H, Griebel L, Sedlmayr M, et al. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia JMIR Res Protoc 2016;5(2):e47.
  152. Tiersen F, Batey P, Harrison MJC, Naar L, Serban AI, Daniels SJC, et Smart Home Sensing and Monitoring in Households With Dementia: User-Centered Design Approach. JMIR Aging 2021;4(3):e27047.
  153. Tuijt R, Rait G, Frost R, Wilcock J, Manthorpe J, Walters K. Remote primary care consultations for people living with dementia during the COVID-19 pandemic: experiences of people living with dementia and their Br J Gen Pract 2021;71(709):e574-82.
  154. Wrede C, Braakman-Jansen A, van Gemert-Pijnen Requirements for Unobtrusive Monitoring to Support Home- Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers. JMIR Aging 2021;4(2):e26875.
  155. Supiano KP, Andersen TC, Haynes Sudden-On-Chronic Death and Complicated Grief in Bereaved Dementia Caregivers: Two Case Studies of Complicated Grief Group Therapy. J Soc Work End Life Palliat Care 2015;11(3-4):267-82.
  156. Neimeyer RA, Currier JM. Grief Therapy: Evidence of Efficacy and Emerging Directions. Current Directions in Psychological Science 2009;Volume 18(6):352-56.
  157. Lundorff M, Holmgren H, Zachariae R, Farver-Vestergaard I, O'Connor M. Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. J Affect Disord 2017;212:138-49.
  158. Iglewicz A, Shear MK, Reynolds CF, 3rd, Simon N, Lebowitz B, Zisook Complicated grief therapy for clinicians: An evidence- based protocol for mental health practice. Depress Anxiety 2020;37(1):90-8.
  159. Coelho A, de Brito M, Barbosa A. Caregiver anticipatory grief: phenomenology, assessment and clinical Current Opinion in Supportive & Palliative Care 2018;12(1):52-7.
  160. Rando Loss and anticipatory grief. Massachusetts: Lexington Books; 1986.
  161. Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic International Journal of Geriatric Psychiatry 2013;28(1):1-17.
  162. Large S, Slinger Grief in caregivers of persons with Alzheimer’s disease and related dementia: a qualitative synthesis. Dementia (London) 2015;14(2):164-83.
  163. Noyes BB, Hill RD, Hicken BL, Luptak M, Rupper R, Dailey NK, et al. The role of grief in dementia caregiving. American Journal of Alzheimer’s Disease & Other Dementias 2010;25(1):9-17.
  164. Holley CK, Mast The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist 2009;49(3):388-96.
  165. Lindauer A, Harvath TA. Pre-death grief in the context of dementia caregiving: a concept Journal of Advanced Nursing 2014;70(10):2196-207.
  166. Clemerson G, Walsh S, Isaac Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed. Dementia (London) 2014;13(4):451-66.
  167. Griffin J, Oyebode JR, Allen J. Living with a diagnosis of behavioural-variant frontotemporal dementia: The person's Dementia (London) 2016;15(6):1622-42.
  168. Harris PB. The perspective of younger people with dementia: Still an overlooked population. Social Work in Mental Health. Soc Work Ment Health 2004;2(4):17–36.
  169. Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers' Aging & Mental Health 2007;11(3):281-90.
  170. Cabote CJ, Bramble M, McCann Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review. Journal of Family Nursing 2015;21(3):443-68.
  171. Keady J, Ashcroft-Simpson S, Halligan K, Williams Admiral nursing and the family care of a parent with dementia: using autobiographical narrative as grounding for negotiated clinical practice and decision-making. Scandinavian Journal of Caring Sciences 2007;21(3):345-53.
  172. Wladkowski Live Discharge from Hospice and the Grief Experience of Dementia Caregivers. J Soc Work End Life Palliat Care 2016;12(1-2):47-62.
  173. Dehpour T, Koffman J. Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic Aging Ment Health 2023;27(1):110-23.
  174. Meichsner F, Schinkothe D, Wilz Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial. American Journal of Alzheimer's Disease & Other Dementias 2016;31(3):231-40.
  175. Liew TM, Tai BC, Wee SL, Koh GC, Yap The Longitudinal Effects of Caregiver Grief in Dementia and the Modifying Effects of Social Services: A Prospective Cohort Study. Journal of the American Geriatrics Society 2020;68(10):2348-53.
  176. MacCourt P, McLennan M, Somers S, Krawczyk Effectiveness of a Grief Intervention for Caregivers of People With Dementia. Omega - Journal of Death & Dying 2017;75(3):230-47.
  177. Bravo-Benitez J, Cruz-Quintana F, Fernandez-Alcantara M, Perez-Marfil MN. Intervention Program to Improve Grief- Related Symptoms in Caregivers of Patients Diagnosed With Dementia. Frontiers in Psychology 2021;12:628750.
  178. Meichsner F, Wilz G. Dementia caregivers' coping with pre- death grief: effects of a CBT-based Aging & Mental Health 2018;22(2):218-25.
  179. Knutsen H, Raholm MB. The Dialectic Movement Between Suffering and Reconciliation: Male Caregivers’ Experience of Caring for Their Wives Suffering from International Journal for Human Caring 2009;13(4):50-6.
  180. Paun O, Farran CJ, Fogg L, Loukissa D, Thomas PE, Hoyem R. A chronic grief intervention for dementia family caregivers in long-term Western Journal of Nursing Research 2015;37(1):6-27.
  181. Lewis MM, Trzinski Counseling older adults with dementia who are dealing with death: innovative interventions for practitioners. Death Studies 2006;30(8):777-87.
  182. Watanabe A, Suwa S. The mourning process of older people with dementia who lost their spouse. Journal of Advanced Nursing 2017;73(9):2143-55.
  183. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Text Revision (DSM-5-TR™) 5th Edition.
  184. World Health Organisation. 6B42 Prolonged grief disorder. [cited 22 Jun 2023]. Available from url: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f991786158
  185. Schulz R, Boerner K, Shear K, Zhang S, Gitlin LN. Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 2006;14(8): 650-8.
  186. Ross A, Dagley JC. An assessment of anticipatory grief as experienced by family caregivers of individuals with dementia. Alzheim Care Today 2009;10(1):8–21.
  187. Hanson E, Hellström A, Sandvide Å, Jackson GA, MacRae R, Waugh A, et The extended palliative phase of dementia - An integrative literature review. Dementia (London) 2019;18(1):108-34.
  188. Reisberg B, Wegiel J, Franssen E, Kadiyala S, Auer S, Souren L, et al. Clinical features of severe dementia: Staging. In: Burns A, Winblad B, Severe dementia. New York: John Wiley & Sons Ltd; 2006. p.83-115.
  189. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005;330(7498):1007-11.
  190. Gijsberts MJ, van der Steen JT, Muller MT, Hertogh CM, Deliens L. Spiritual end-of-life care in Dutch nursing homes: an ethnographic study. J Am Med Dir Assoc 2013;14(9):679-84
  191. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 2010;22(1):37-55.
  192. Baptista MA, Santos RL, Kimura N, Lacerda IB, Johannenssen A, Barca ML, et al. Quality of life in young onset dementia: an updated systematic review. Trends Psychiatry Psychother 2016;38(1):6-13.
  193. World Health Organisation. Pallative Care. 2020. [cited 22 Jun 2023]. Available from url: https://www.who.int/news-room/fact-sheets/detail/palliative-care
  194. Tolson D, Fleming A, Hanson E, de Abreu W, Crespo ML, Macrae R, et al. Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative. Int J Integr Care 2016;16(4):18.
  195. Browne B, Kupeli N, Moore KJ, Sampson EL, Davies N. Defining end of life in dementia: A systematic review. Palliat Med 2021;35(10):1733-46.
  196. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28(3):197-209
  197. Kochovska S, Garcia MV, Bunn F, Goodman C, Luckett T, Parker D, et Components of palliative care interventions addressing the needs of people with dementia living in long-term care: A systematic review. Palliat Med 2020;34(4):454-92.
  198. Aminoff BZ, Adunsky Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing 2006;35(6):597-601.
  199. Parker KJ, Hickman LD, Phillips JL, Ferguson C. Interventions to optimise transitional care coordination for older people living with dementia and concomitant multimorbidity and their caregivers: A systematic review. Contemp Nurse 2020;56(5- 6):505-33.
  200. Amjad H, Wong SK, Roth DL, Huang J, Willink A, Black BS, et al. Health Services Utilization in Older Adults with Dementia Receiving Care Coordination: The MIND at Home Health Serv Res 2018;53(1):556-79.
  201. Bass DM, Judge KS, Snow AL, Wilson NL, Morgan RO, Maslow K, et A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months. Alzheimers Res Ther 2014;6(1):9.
  202. Judge KS, Bass DM, Snow AL, Wilson NL, Morgan R, Looman WJ, et al. Partners in dementia care: a care coordination intervention for individuals with dementia and their family caregivers. Gerontologist 2011;51(2):261-72.
  203. Samus QM, Johnston D, Black BS, Hess E, Lyman C, Vavilikolanu A, et al. A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized Am J Geriatr Psychiatry 2014;22(4):398-414.
  204. Gaugler JE, Roth DL, Haley WE, Mittelman Modeling trajectories and transitions: results from the New York University caregiver intervention. Nurs Res 2011;60(3 Suppl):S28-37.
  205. Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 2017;18(9):e543-e51.
  206. Scottish Government. Anticipatory Care Planning: Frequently Asked Questions. 2010. [cited 22 Jun 2023]. Available from url: https://www.gov.scot/publications/anticipatory-care-planning-frequently-asked-questions/ 
  207. Scottish Government. Anticipatory Care Planning and Future Care Planning. Chief Medical Officer for Scotland 2023;
  208. Healthcare Improvement Anticipatory Care Planning. 2021. [cited 22 Jun 2023]. Available from url: https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit
  209. Kelly AJ, Luckett T, Clayton JM, Gabb L, Kochovska S, Agar Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis. Palliat Support Care 2019;17(6):707-19.
  210. Care Quality Protect, respect, connect – decisions about living and dying well during COVID-19. 2021. [cited 22 Jun 2023]. Available from url: https://www.cqc.org.uk/publications/themed-work/protect-respect-connect-decisions-about-living-dying-well-during-covid-19
  211. Harrison Dening K, King M, Jones L, Vickerstaff V, Sampson Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia? PLoS One 2016;11(7):e0159056.
  212. Cresp SJ, Lee SF, Moss Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis. Dementia (London) 2020;19(5):1532-59.
  213. Piers R, Albers G, Gilissen J, De Lepeleire  J, Steyaert  J,  Van Mechelen W, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care 2018;17(1):88.
  214. Wendrich-van Dael A, Bunn F, Lynch J, Pivodic L, Van den Block L, Goodman Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences. Int J Nurs Stud 2020;107:103576.
  215. Geddis-Regan A, Errington L, Abley C, Wassall R, Exley C, Thomson R. Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions. Health Expect 2021;24(1): 19-32.
  216. van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, et al. Factors associated with initiation of advance care planning in dementia: a systematic Journal of Alzheimer's Disease 2014;40(3):743-57.
  217. Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et al. Perspectives of people with dementia and carers  on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliat Med 2019;33(3):274-90.
  218. NHS Education for Scotland. Quality improvement. 2021. [cited 22 Jun 2023]. Available from url: https://www.nes.scot.nhs.uk/our-work/quality-improvement/
  219. Cargo M DP, Gagnon, M-P, Griffiths F, Nicolau B, O’Cathain A, Rousseau M-C, Vedel I. Mixed Methods Appraisal Tool (MMAT), version 2018. McGill; 2018. Available from url: http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/146002140/MMAT_2018_criteria-manual_2018-08-08c.pdf