Original Study| Volume 21, ISSUE 8, P1093-1101.e1, August 2020

Appropriateness of End-of-Life Care in People Dying With Dementia: Applying Quality Indicators on Linked Administrative Databases

Published:February 07, 2020DOI:



      Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.


      We conducted a retrospective observational study.

      Setting and Participants

      We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.


      We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.


      In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.

      Conclusions and Implications

      Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of the American Medical Directors Association
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Prince M.
        • Bryce R.
        • Albanese E.
        • et al.
        The global prevalence of dementia: A systematic review and meta-analysis.
        Alzheimers Dement J Alzheimers Assoc. 2013; 9: 63-75.e2
        • Wimo A.
        • Jönsson L.
        • Bond J.
        • et al.
        • Alzheimer Disease International
        The worldwide economic impact of dementia 2010.
        Alzheimers Dement J Alzheimers Assoc. 2013; 9: 1-11.e3
        • Mitchell S.L.
        • Teno J.M.
        • Kiely D.K.
        • et al.
        The clinical course of advanced dementia.
        N Engl J Med. 2009; 361: 1529-1538
        • Mitchell S.L.
        • Kiely D.K.
        • Hamel M.B.
        Dying with advanced dementia in the nursing home.
        Arch Intern Med. 2004; 164: 321-326
        • Vandervoort A.
        • Van den Block L.
        • van der Steen J.T.
        • et al.
        Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying.
        J Am Med Dir Assoc. 2013; 14: 485-492
        • Aminoff B.Z.
        • Adunsky A.
        Dying dementia patients: Too much suffering, too little palliation.
        Am J Hosp Palliat Care. 2005; 22: 344-348
        • Klapwijk M.S.
        • Caljouw M.A.
        • van Soest-Poortvliet M.C.
        • et al.
        Symptoms and treatment when death is expected in dementia patients in long-term care facilities.
        BMC Geriatr. 2014; 14: 99
        • Murray S.A.
        • Kendall M.
        • Boyd K.
        • Sheikh A.
        Illness trajectories and palliative care.
        BMJ. 2005; 330: 1007-1011
        • Birch D.
        • Draper J.
        A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia.
        J Clin Nurs. 2008; 17: 1144-1163
        • De Schreye R.
        • Houttekier D.
        • Deliens L.
        • Cohen J.
        Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer's disease, cancer or COPD for population-level administrative databases: A RAND/UCLA appropriateness study.
        Palliat Med. 2017; 31: 932-945
        • Lamberg J.L.
        • Person C.J.
        • Kiely D.K.
        • Mitchell S.L.
        Decisions to hospitalize nursing home residents dying with advanced dementia.
        J Am Geriatr Soc. 2005; 53: 1396-1401
        • Miranda R.
        • Penders Y.W.H.
        • Smets T.
        • et al.
        Quality of primary palliative care for older people with mild and severe dementia: An international mortality follow-back study using quality indicators.
        Age Ageing. 2018; 47: 824-833
        • Chassin M.R.
        • Brook R.H.
        • Park R.E.
        • et al.
        Variations in the use of medical and surgical services by the Medicare population.
        N Engl J Med. 1986; 314: 285-290
        • Park R.E.
        • Fink A.
        • Brook R.H.
        • et al.
        Physician ratings of appropriate indications for six medical and surgical procedures.
        Am J Public Health. 1986; 76: 766-772
        • Earle C.C.
        • Neville B.A.
        • Landrum M.B.
        • et al.
        Evaluating claims-based indicators of the intensity of end-of-life cancer care.
        Int J Qual Health Care. 2005; 17: 505-509
      1. For a Healthy Belgium - For a Healthy Belgium.
        (Available at:)
        Date: 2019
        Date accessed: October 25, 2019
      2. End of life - For a Healthy Belgium.
        (Available at:)
        • Maetens A.
        • De Schreye R.
        • Faes K.
        • et al.
        Using linked administrative and disease-specific databases to study end-of-life care on a population level.
        BMC Palliat Care. 2016; 15: 86
      3. The RAND/UCLA appropriateness method user's manual - MR1269.pdf. 2016. Available at: Accessed January 24, 2020.

      4. 20160830_Tussentijds rapport zorgregio's.pdf. 2017. Available at: Accessed January 24, 2020.

        • Spilsbury K.
        • Rosenwax L.
        • Arendts G.
        • Semmens J.B.
        The Association of Community-Based Palliative Care with reduced emergency department visits in the last year of life varies by patient factors.
        Ann Emerg Med. 2017; 69: 416-425
        • Benchimol E.I.
        • Manuel D.G.
        • To T.
        • et al.
        Development and use of reporting guidelines for assessing the quality of validation studies of health administrative data.
        J Clin Epidemiol. 2011; 64: 821-829
      5. Validation of diagnostic codes within medical services claims. 2017. Available at: Accessed January 24, 2020.

        • Riley G.F.
        Administrative and claims records as sources of health care cost data.
        Med Care. 2009; 47: S51-S55
        • Garcia-Ptacek S.
        • Kåreholt I.
        • Cermakova P.
        • et al.
        Causes of death according to death certificates in individuals with dementia: A cohort from the Swedish Dementia Registry.
        J Am Geriatr Soc. 2016; 64: e137-e142
      6. Vandormael S, Meirschaert A, Steyaert J, De Lepeleire J. Insights on dying, dementia and death certificates. Arch Public Health. 2018. Available at: Accessed January 24, 2020.

        • Perera G.
        • Stewart R.
        • Higginson I.J.
        • Sleeman K.E.
        Reporting of clinically diagnosed dementia on death certificates: Retrospective cohort study.
        Age Ageing. 2016; 45: 668-673
        • Feng Z.
        • Coots L.A.
        • Kaganova Y.
        • Wiener J.M.
        Hospital and ED use among Medicare beneficiaries with dementia varies by setting and proximity to death.
        Health Aff Proj Hope. 2014; 33: 683-690
        • Sleeman K.E.
        • Perera G.
        • Stewart R.
        • Higginson I.J.
        Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data.
        Alzheimers Dement. 2018; 14: 20-27
        • De Schreye R.
        • Smets T.
        • Annemans L.
        • et al.
        Applying quality indicators for administrative databases to evaluate end-of-life care for cancer patients in Belgium.
        Health Aff Proj Hope. 2017; 36: 1234-1243
        • Mitchell S.L.
        • Kiely D.K.
        • Miller S.C.
        • et al.
        Hospice care for patients with dementia.
        J Pain Symptom Manage. 2007; 34: 7-16
        • Chen I.-H.
        • Lin K.-Y.
        • Hu S.H.
        • et al.
        Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.
        J Clin Nurs. 2018; 27: 848-858
      7. Todd A, Husband A, Andrew I, et al. Inappropriate prescribing of preventative medication in patients with life-limiting illness: A systematic review. BMJ Support Palliat Care. 2016. Available at: Accessed January 24, 2020.

        • Paque K.
        • De Schreye R.
        • Elseviers M.
        • et al.
        Discontinuation of medications at the end of life: A population study in Belgium, based on linked administrative databases.
        Br J Clin Pharmacol. 2019; 85: 827-837
        • Wauters M.
        • Elseviers M.
        • Vaes B.
        • et al.
        Polypharmacy in a Belgian cohort of community-dwelling oldest old (80+).
        Acta Clin Belg. 2016; 71: 158-166
        • Kristensen R.U.
        • Nørgaard A.
        • Jensen-Dahm C.
        • et al.
        Polypharmacy and potentially inappropriate medication in people with dementia: A nationwide study.
        J Alzheimers Dis JAD. 2018; 63: 383-394
      8. Palliative Care Outcomes Collaboration. 2018. Available at: Accessed January 24, 2020.

      9. About IKNL. 2018. Available at: Accessed January 24, 2020.

        • 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: 132-150.e1