Duration of Care Trajectories in Persons With Dementia Differs According to Demographic and Clinical Characteristics

J Am Med Dir Assoc. 2020 Aug;21(8):1102-1107.e6. doi: 10.1016/j.jamda.2020.01.008. Epub 2020 Feb 27.


Objectives: To estimate (1) the duration of no formal care, home care, and institutional care after dementia diagnosis, and (2) the effect of age, sex, living situation, dementia medication, migration background, and income on this dementia care duration.

Design: Longitudinal retrospective study using routinely recorded general practice electronic health records linked with population-based healthcare and mortality data.

Setting and participants: In total, 11,012 community-dwelling persons who received an incident dementia diagnosis and were listed in a Dutch general practitioner database from 448 general practices in the Netherlands.

Methods: Using multistate modeling analyses, we estimated the mean duration of care types (no/home/institutional care) for different ages based on simulations of transition rates and examined the influence of demographic and clinical factors on these durations.

Results: From dementia diagnosis onward in 85-year-old men, the mean duration without formal care was 0.7 years, of home care 1.7, and institutional care 1.1 years. In 85-year-old women, the duration without formal care was 0.8 years, of home care 2.3, and institutional care 2.3 years. Total care duration was 3.5 years in 85-year-old men and 5.4 years in 85-year-old women. In men, the duration of home care was longer compared with no formal care and institutional care. The duration of no formal care was longer in persons not living alone, without prescribed dementia medication, with a non‒Western migration background, or with a higher income. The duration of home or institutional care was longer in women, persons without polypharmacy, in those living alone, or those with a Western background.

Conclusions and implications: Our findings help to increase understanding of long-term dementia care trajectories and show that demographic and clinical factors determine the duration of care types. Our results can contribute to the organization of healthcare resource planning and monitoring of the effects of healthcare policy and interventions.

Keywords: Dementia; home care; institutional care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged, 80 and over
  • Child, Preschool
  • Dementia* / epidemiology
  • Female
  • Home Care Services*
  • Humans
  • Independent Living
  • Long-Term Care
  • Male
  • Netherlands / epidemiology
  • Retrospective Studies