Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

References

• Aguirre, E., Spector, A., & Orrell, M. (2014). Guidelines for adapting cognitive stimulation therapy to other cultures. Clinical Interventions in Aging, 9, 1003–1007. doi:10.2147/cia.S61849
   PubMed Web of Science ®Google Scholar
• Alzheimer Europe. (2015). Dementia Yearbook 2015. Retrieved from https://www.alzheimer-europe.org/Publications/Dementia-in-Europe-Yearbooks
   Google Scholar
• Balasubramanian, A. B., Kawas, C. H., Peltz, C. B., Brookmeyer, R., & Corrada, M. M. (2012). Alzheimer disease pathology and longitudinal cognitive performance in the oldest-old with no dementia. Neurology, 79(9), 915–921. doi:10.1212/WNL.0b013e318266fc77
   PubMed Web of Science ®Google Scholar
• Bethell, J., Commisso, E., Rostad, H. M., Puts, M., Babineau, J., Grinbergs-Saull, A., … McGilton, K. S. (2018). Patient engagement in research related to dementia: A scoping review. Dementia, 17(8), 944–975. doi:10.1177/1471301218789292
   PubMedGoogle Scholar
• Blessed, G., Tomlinson, B. E., & Roth, M. (1968). The association between quantitative measures of dementia and of senile change in the cerebral grey matter of elderly subjects. British Journal of Psychiatry, 114(512), 797. doi:10.1192/bjp.114.512.797
   PubMed Web of Science ®Google Scholar
• Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51(5), 657–664. doi:10.1034/j.1600-0579.2003.00210.x
   PubMed Web of Science ®Google Scholar
• Brooker, D., Evans, S., Evans, S., Bray, J., Saibene, F. L., Scorolli, C., … Dröes, R.-M. (2018). Evaluation of the implementation of the Meeting Centres Support Program in Italy, Poland, and the UK; exploration of the effects on people with dementia. International Journal of Geriatric Psychiatry, 33(7), 883–892. doi:10.1002/gps.4865
   PubMed Web of Science ®Google Scholar
• Budgett, J., Brown, A., Daley, S., Page, T. E., Banerjee, S., Livingston, G., & Sommerlad, A. (2019). The social functioning in dementia scale (SF-DEM): Exploratory factor analysis and psychometric properties in mild, moderate, and severe dementia. Alzheimers & Dementia, 11, 45–52. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30623018. doi:10.1016/j.dadm.2018.11.001
   Google Scholar
• Clare, L., Kudlicka, A., Oyebode, J. R., Jones, R. W., Bayer, A., Leroi, I., … Woods, B. (2019). Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: The GREAT RCT. Health Technology Assessment, 23(10), 1–242. doi:10.3310/hta23100
   PubMed Web of Science ®Google Scholar
• Corrada, M. M., Berlau, D. J., & Kawas, C. H. (2012). A population-based clinicopathological study in the oldest-old: The 90+ study. Current Alzheimer Research, 9(6), 709–717.
   PubMed Web of Science ®Google Scholar
• de Vugt, M., & Dröes, R.-M. (2017). Social health in dementia. Towards a positive dementia discourse. Ageing and Mental Health, 21, 1–3. doi:10.1080/13607863.2016.1262822
   PubMed Web of Science ®Google Scholar
• Department of Health England. (2013). Dementia, a state of the nation report on dementia care and support in England. Retrieved from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/26213 9/Dementia.pdf Addition: Social care 2018:Health and social care project
   Google Scholar
• Donkers, H. W., Van der Veen, D. J., Teerenstra, S., Vernooij-Dassen, M. J., Nijhuis-Vander Sanden, M. W. G., & Graff, M. J. L. (2018). Evaluating the social fitness Programme for older people with cognitive problems and their caregivers: Lessons learned from a failed trial. BMC Geriatrics, 18(1), 237. doi:10.1186/s12877-018-0927-8
   PubMedGoogle Scholar
• Drachman, D. A. (2014). The amyloid hypothesis, time to move on: Amyloid is the downstream result, not cause, of Alzheimer’s disease. Alzheimer's & Dementia, 10(3), 372–380. doi:10.1016/j.jalz.2013.11.003
   PubMed Web of Science ®Google Scholar
• Dröes, R., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., … Johannessen, A. (2017). Social health and dementia: A European consensus on the operationalization of the concept and directions for research and practice. Aging & Mental Health, 21(1), 4–17. doi:10.1080/13607863.2016.1254596
   PubMed Web of Science ®Google Scholar
• Dutch Ministry of Health, D. M. O. (2015). About dignity and pride. Retrieved from https://www.waardigheidentrots.nl/dignity-and-pride/
   Google Scholar
• Fratiglioni, L., Paillard-Borg, S., & Winblad, B. (2004). An active and socially integrated lifestyle in late life might protect against dementia. The Lancet Neurology, 3(6), 343–353. doi:10.1016/S1474-4422(04)00767-7
   PubMed Web of Science ®Google Scholar
• Fratiglioni, L., & Wang, H.-X. (2007). Brain reserve hypothesis in dementia. Journal of Alzheimer's Disease: JAD, 12(1), 11–22. doi:10.3233/jad-2007-12103
   PubMed Web of Science ®Google Scholar
• Gove, D., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, G., Chattat, R., & Øksnebjerg, L. (2018). Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement). Aging & Mental Health, 22(6), 723–729. doi:10.1080/13607863.2017.1317334
   PubMed Web of Science ®Google Scholar
• Hersi, M., Irvine, B., Gupta, P., Gomes, J., Birkett, N., & Krewski, D. (2017). Risk factors associated with the onset and progression of Alzheimer's disease: A systematic review of the evidence. NeuroToxicology, 61, 143–187. doi:10.1016/j.neuro.2017.03.006
   PubMed Web of Science ®Google Scholar
• Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad, A. R., Kromhout, D., … van der Meer, J. W. (2011). How should we define health? BMJ, 343, d4163. doi:10.1136/bmj.d4163
   PubMed Web of Science ®Google Scholar
• Ikram, A., Melis, R., Perry, M., Vernooij-Dassen, M., Welmer, A. K., Hui-Xin, W., … Jeon, J. H. (2019). Social health and reserve in the dementia patient journey (SHARED). In: European Joint Programme Neurodegenerative Diseases (JPND).
   Google Scholar
• Jack, C. R., Bennett, D. A., Blennow, K., Carrillo, M. C., Dunn, B., Haeberlein, S. B., … Silverberg, N. (2018). NIA-AA Research Framework: Toward a biological definition of Alzheimer's disease. Alzheimer's & Dementia, 14(4), 535–562. doi:10.1016/j.jalz.2018.02.018
   PubMed Web of Science ®Google Scholar
• Kas, M., Eisel, U., Ikram, A., Vernooij, M., Melis, R., Perry, M., & Vernooij-Dassen, M. (2018). Social factors in cognitive decline and dementia: Towards an early intervention approach. Netherlands: Memorabel/ZONMW.
   Google Scholar
• Katzman, R. (1976). The prevalence and malignancy of Alzheimer disease: A major killer. Archives of Neurology, 33(4), 217–218. doi:10.1001/archneur.1976.00500040001001
   PubMedGoogle Scholar
• Kim, S. K., & Park, M. (2017). Effectiveness of person-centered care on people with dementia: A systematic review and meta-analysis. Clinical Interventions in Aging, 12, 381–397. doi:10.2147/CIA.S117637
   PubMed Web of Science ®Google Scholar
• Kitwood, T. (1997). Dementia reconsidered: The person comes first (rethinking ageing). Buckingham: Open University Press.
   Google Scholar
• Kuiper, J. S., Zuidersma, M., Oude Voshaar, R. C., Zuidema, S. U., van den Heuvel, E. R., Stolk, R. P., & Smidt, N. (2015). Social relationships and risk of dementia: A systematic review and meta-analysis of longitudinal cohort studies. Ageing Research Reviews, 22, 39–57. doi:10.1016/j.arr.2015.04.006
   PubMed Web of Science ®Google Scholar
• Kwak, S., Joo, W. T., Youm, Y., & Chey, J. (2018). Social brain volume is associated with in-degree social network size among older adults. Proceedings: Biological Sciences, 285(1871), pii: 20172708. doi:10.1098/rspb.2017.2708
   PubMed Web of Science ®Google Scholar
• Laver, K., Milte, R., Dyer, S., & Crotty, M. (2017). A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia. Journal of Aging and Health, 29(8), 1308–1349. doi:10.1177/0898264316660414
   PubMed Web of Science ®Google Scholar
• Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., … Mukadam, N. (2017). Dementia prevention, intervention, and care. The Lancet, 390(10113), 2673–2734. doi:10.1016/S0140-6736(17)31363-6
   PubMed Web of Science ®Google Scholar
• McDermott, O., Charlesworth, G., Hogervorst, E., Stoner, C., Moniz-Cook, E., Spector, A., … Orrell, M. (2018). Psychosocial interventions for people with dementia: A synthesis of systematic reviews. Aging and Mental Health, 23, 393–403. doi:10.1080/13607863.2017.1423031
   PubMed Web of Science ®Google Scholar
• Meiland, F., Innes, A., Mountain, G., Robinson, L., van der Roest, H., García-Casal, J. A., … Franco-Martin, M. (2017). Technologies to support community-dwelling persons with dementia: A position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics. JMIR Rehabilitation and Assistive Technologies, 4(1), e1. doi:10.2196/rehab.6376
   PubMedGoogle Scholar
• Miah, J., Dawes, P., Edwards, S., Leroi, I., Starling, B., & Parsons, S. (2019). Patient and public involvement in dementia research in the European Union: A scoping review. BMC Geriatrics, 19(1), 220. doi:10.1186/s12877-019-1217-9
   PubMed Web of Science ®Google Scholar
• Moniz-Cook, E., Vernooij-Dassen, M., Woods, B., & Orrell, M. (2011). Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging and Mental Health, 15(3), 283–290. doi:10.1080/13607863.2010.543665
   PubMed Web of Science ®Google Scholar
• Patterson, K. M., Clarke, C., Wolverson, E. L., & Moniz-Cook, E. D. (2018). Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis. International Psychogeriatrics, 30(6), 791–805. doi:10.1017/S1041610216002374
   PubMed Web of Science ®Google Scholar
• Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global prevalence of dementia: A systematic review and metaanalysis. Alzheimer's & Dementia, 9(1), 63–75.e62. doi:10.1016/j.jalz.2012.11.007
   PubMed Web of Science ®Google Scholar
• Qiu, C., & Fratiglioni, L. (2018). Aging without dementia is achievable: Current evidence from epidemiological research. Journal of Alzheimer's Disease, 62(3), 933–942. doi:10.3233/JAD-171037
   PubMed Web of Science ®Google Scholar
• Richards, M., & Brayne, C. (2010). What do we mean by Alzheimer’s disease. BMJ, 341(2), c4670. doi:10.1136/bmj.c4670
   PubMedGoogle Scholar
• Salinas, J., Beiser, A., Himali, J. J., Satizabal, C. L., Aparicio, H. J., Weinstein, G., … Seshadri, S. (2017). Associations between social relationship measures, serum brain-derived neurotrophic factor, and risk of stroke and dementia. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 3(2), 229–237. doi:10.1016/j.trci.2017.03.001
   PubMedGoogle Scholar
• Selkoe, D. J. (2019). Alzheimer disease and aducanumab: Adjusting our approach. Nature Reviews Neurology, 15(7), 365–366. doi:10.1038/s41582-019-0205-1
   PubMed Web of Science ®Google Scholar
• Smets, T., Onwuteaka-Philipsen, B. B. D., Miranda, R., Pivodic, L., Tanghe, M., van Hout, H., … Van den Block, L. (2018). Integrating palliative care in long-term care facilities across Europe (PACE): Protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries. BMC Palliative Care, 17(1), 47. doi:10.1186/s12904-018-0297-1
   PubMedGoogle Scholar
• Spector, A., Stoner, C. R., Chandra, M., Vaitheswaran, S., Du, B., Comas-Herrera, A., … Walker, R. (2019). Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: Study protocol for Brazil, India and Tanzania (CST-International). BMJ Open, 9(8), e030933. doi:10.1136/bmjopen-2019-030933
   PubMed Web of Science ®Google Scholar
• The Lancet. (2017). Dementia burden coming into focus. Lancet, 390(10113), 2606. doi:10.1016/s0140-6736(17)33304-4
   Web of Science ®Google Scholar
• The Lancet. (2018). Living and dying with dementia. The Lancet, 391(10138), 2390.
   Web of Science ®Google Scholar
• Tilburgs, B., Vernooij-Dassen, M., Koopmans, R., Weidema, M., Perry, M., & Engels, Y. (2018). The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: A qualitative study. BMC Geriatrics, 18(1), 184. doi:10.1186/s12877-018-0872-6
   PubMedGoogle Scholar
• Van der Roest, H. G., Wenborn, J., Pastink, C., Droes, R. M., & Orrell, M. (2017). Assistive technology for memory support in dementia. Cochrane Database Systematic Review, 6, 6D009627. doi:10.1002/14651858.CD009627.pub2
   Google Scholar
• Van Mierlo, L. D., Van der Roest, H. G., Meiland, F. J., & Droes, R. M. (2010). Personalized dementia care: Proven effectiveness of psychosocial interventions in subgroups. Ageing Research Reviews, 9(2), 163–183. doi:10.1016/j.arr.2009.09.002
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., & Jeon, Y.-H. (2016). Social health and dementia: The power of human capabilities. International Psychogeriatrics, 28(5), 701–703. doi:10.1017/S1041610216000260
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., & Moniz-Cook, E. (2014). Raising the standard of applied dementia care research: Addressing the implementation error. Aging & Mental Health, 18(7), 809–814. doi:10.1080/13607863.2014.899977
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., Moniz-Cook, E., & Jeon, Y. H. (2018). Social health in dementia care: Harnessing an applied research agenda. International Psychogeriatrics, 30(6), 775–778. doi:10.1017/S1041610217002769
   PubMed Web of Science ®Google Scholar
• Ward, R., Clark, A., Campbell, S., Graham, B., Kullberg, A., Manji, K., … Keady, J. (2018). The lived neighborhood: Understanding how people with dementia engage with their local environment. International Psychogeriatrics, 30(6), 867–880. doi:10.1017/S1041610217000631
   PubMed Web of Science ®Google Scholar
• Winblad, B., Amouyel, P., Andrieu, S., Ballard, C., Brayne, C., Brodaty, H., … Zetterberg, H. (2016). Defeating Alzheimer's disease and other dementias: A priority for European science and society. Lancet Neurology, 15(5), 455–532. doi:10.1016/S1474-4422(16)00062-4
   PubMed Web of Science ®Google Scholar
• World Health Organisation. (2012). Dementia: A public health priority. Report No.: 978 92 4 156 445 8. https://www.who.int/mental_health/publications/dementia_report_2012/en/ dowloaded english 21/11/2019
   Google Scholar
• World Health Organisation. (2017). Dementia key facts. Retrieved from http://www.who.int/news-room/fact-sheets/detail/dementia
   Google Scholar