Table 1.
Description of 34 studies retrieved from systematic search
| Author, publication year | Country | Years of data collection | Source of study participants | Number of people with dementia | Dementia type | Outcome ascertainment | Mean years follow-up (max) |
|---|---|---|---|---|---|---|---|
| Albert, 1999 [19] | USA | 1996–97 | Research cohort (WHICAP) | 400 | AD | Records and self/carer-report | 1.75 |
| Aupperle, 1999 [20] | USA | 1997 | Clinical sample | 58 | AD | Carer-report | 1 |
| Browne, 2017 [21] | England | 2008–09 | National register (CPRD) | 4999 | All-cause dementia | National register | 3 (5) |
| Brüggenjürgen, 2015 [22] | Germany | 2005–08 | Insurance register (Statutory Health Insurance) | 20,000 | AD | Insurance register | 4 |
| Bynum, 2004 [23] | USA | 1999 | Insurance register (Medicare) | 103,512 | All-cause dementia | Insurance register | 1 |
| Callahan, 2012 [24] | USA | 2001–08 | Insurance registers (Medicare and Medicaid claims, MDS and OASIS) | 1523 | All-cause dementia | Insurance register | 5.2 |
| Chen, 2014 [25] | England | 2008–10 | National registers (CPRD and HES) | 3896 | AD | National register | 2 |
| Cortes, 2008 [26] | France | Not reported | Research cohort (REAL-FR) | 686 | Mild-moderate AD | Self-report | 2 |
| Hill, 2005 [27] | USA | 1999–2002 | Insurance register (Medicare) | 3357 | AD and VaD | Insurance register | 3 |
| Jennings, 2019 [28] | USA | 2012–15 | Insurance register (Medicare) | 3249 | All-cause dementia | Insurance register | 1.75 |
| Kunik, 2003 [29] | USA | 1997–99 | Insurance register (VAMC) | 864 | All-cause dementia | Insurance register | 1.8 (2) |
| Malone, 2009 [30] | USA | 2000–06 | National register (HealthCore) | 5396 | AD | National register | 2 (6) |
| Maust 2017 [31] | USA | 2002–08 | Research cohort (ADAMS) | 332 | All-cause dementia | Insurance register | 6 |
| Miu, 2018 [32] | Hong Kong | 2013–15 | Clinical sample | 267 | All-cause dementia | Hospital records | 1 (1) |
| Mueller, 2017 [33] | England | 2006–13 | Clinical register (CRIS) | 970 | AD and DLB | National register | 0.9 |
| Mueller, 2018 [34] | England | 2011–13 | Clinical register (CRIS) | 4668 | All-cause dementia | National register | 2 |
| Nourhashemi, 2005 [35] | France | Not reported | Research cohort (REAL-FR) | 677 | AD | Self/carer-report | 1 |
| Phelan, 2012 [36] | USA | 1994–2007 | Research cohort (ACT) | 494 | All-cause dementia | Hospital records | 9.6 (12) |
| Pimouguet, 2016 [11] | Sweden | 2001–10 | Research cohort (SNAC-K) | 175 | All-cause dementia | National register | 4.7 (6) |
| Rudolph, 2010 [37] | USA | 1991–2006 | Research cohort (MADRC) | 827 | AD | Self/carer-report | 3 |
| Russ, 2015 [38] | Scotland | Not reported | National register (SDRIR) | 730 | All-cause dementia | National register | 1.2 (3.3) |
| Sköldunger, 2015 [39] | Sweden | 2001–04 | Research cohort (SNAC) | 319 | All-cause dementia | Self/carer-report | 3 |
| Sloane, 2017 [40] | USA | Not reported | Clinical sample | 136 | AD | Carer-report | 0.5 |
| Sommerlad, 2019 [41] | UK | 2008–16 | Clinical register (CRIS) | 10,137 | All-cause dementia | Hospital records | 2.5 (8.2) |
| Soto, 2015 [42] | France | Not reported | Research cohort (PLASA) | 1131 | AD | Self/carer-report | 2 |
| Thorpe, 2010 [12] | USA | 1997–98 | Research cohort (NLCS) | 1186 | AD and VaD | Insurance register | 1 |
| Tolppanen, 2015 [43] | Finland | 2005–09 | National register (Medication and Alzheimer’s disease study) | 27,948 | AD | National register | 4 (2.2 to 4) |
| Zhao, 2008 [44] | USA | 2003–04 | Insurance register (Medicare) | 25,109 | All-cause dementia | Insurance register | 1 |
| Zhu, 2015 [45] | USA | 1999–2010 | Research cohort (WHICAP) | 171 | All-cause dementia | Insurance register | 3.8 (10) |
| Studies including sub-populations of people with dementia | Special characteristics | ||||||
| Axmon, 2016 [46] | Sweden | 2002–12 | National register (Swedish National Patient registry) | 271 | All-cause dementia (including 199 with ID) | National register | 11 |
| Chen, 2017 [47] | Taiwan | 2002–11 | Insurance register (National Health Insurance Research Database) | 908 | All-cause dementia during last year of life | Insurance register | 9 |
| Forma, 2011 [48] | Finland | 1998–2003 | National clinical registers | 34,232 | All-cause dementia during last 2 years of life | National register | 2 |
| Kedia, 2017 [49] | USA | 2009 | Insurance registers (Medicare and Medicaid) | 9827 | All-cause (including 1294 with comorbid cancer) | Insurance register | 1 |
| Tian, 2013 [50] | USA | 2006–10 | Insurance registers (MarketScans Commercial Claims and Medicare) | 8977 | AD (including 485 with dysphagia) | Insurance register | 2 (3) |
ACT adult changes in thought, AD Alzheimer’s disease, ADAMS Ageing, Demographics and Memory Study, CRIS Clinical Record Interactive Search, DLB dementia with Lewy bodies, ID intellectual disability, MADRC Massachusetts Alzheimer’s Disease Research Center, MDS minimum data set, NLCS National Longitudinal Caregiver Study, NPI Neuropsychiatric Inventory, OASIS Outcome And Assessment Information Set, PLASA Plan de Soin et d’Aide dans la maladie d’Alzheimer, REAl-FR French Network on Alzheimer’s Disease, SDRIR Scottish Dementia Research Interest Register, SNAC(-K) Swedish National Study on Aging and Care (-Kungsholmen), VaD vascular dementia, WHICAP Washington Heights-Inwood Columbia Aging Project