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Can we reduce the stigmatisation experience with psychosocial interventions? An investigation of the meeting centre support programme impact on people with cognitive impairments
- K. Lion, D. Szcześniak, S. Evans, S. Evans, E. Farina, D. Brooker, R. Chattat, F. Meiland, R.-M. Droes, J. Rymaszewska
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- Journal:
- European Psychiatry / Volume 64 / Issue S1 / April 2021
- Published online by Cambridge University Press:
- 13 August 2021, p. S137
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Introduction
People living with dementia or mild cognitive impairment (MCI) experience stigmatisation and there are not many specific psychosocial interventions dedicated to help them coping with this issue, reducing its impact on their lives.
ObjectivesThis study aimed to a) investigate the stigmatisation level among people with dementia and MCI in Poland, Italy and the United Kingdom and b) assess the role of the Meeting Centre Support Programme (MCSP) in decreasing stigmatisation.
MethodsWe investigated outcomes for 114 people with dementia and MCI living in Italy, Poland and the UK who participated 6 months in MCSP or usual care (UC) using a pre/post-test control group study design. Level of stigmatisation was assessed with the Stigma Impact Scale: neurological impairment (SIS).
ResultsStigmatisation level (SIS) among participants varied from 2 to 65 (median=33.5; Q1=27; Q3=41) with people from the UK experiencing a statistically significantly higher level of stigmatisation than people in Italy and Poland. In Italy, stigmatisation was lower (p=0.02) in the MCSP group following the intervention. In Poland, the social isolation level did not significantly change in MCSP, but increased (p=0.05) in UC. In the UK, the social rejection level raised (p=0.03) in MCSP. Overall, the combined data of the three countries did not show statistically significant differences in SIS between MCSP and UC.
ConclusionsStigmatisation among people with dementia and MCI is complex and seems culturally dependent. There is a great opportunity in psychosocial interventions to reduce the burden of stigma among people with dementia which requires further investigation.
DisclosureNo significant relationships.
Does Participation in the Meeting Centre Support Programme Change the Stigma Experienced by People with Dementia?
- D. Szcześniak, K. Urbańska, E. Farina, F.L. Saibene, R. Chattat, S. Evans, S. Evans, D. Brooker, M. Orrell, I. Hendriks, F. Meiland, R.M. Dröes, J. Rymaszewska
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- Journal:
- European Psychiatry / Volume 41 / Issue S1 / April 2017
- Published online by Cambridge University Press:
- 23 March 2020, p. S177
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Introduction
The Meeting Centre Support Programme (MCSP) is a community-based approach to support people living with dementia and their families. It was developed in the Netherlands and has been implemented in other European Countries (Italy, Poland and the UK) within the JPND-MEETINGDEM project.
AimsTo assess the relationship between background characteristics of people with dementia participating in MCSP, mood, quality of life (QoL) and experienced stigma, and to explore if and how the experienced stigma changed after 6 months of participation in MCSP.
MethodsA pretest (M1) post-test (M7) control group design with matched groups regarding severity of dementia was applied. In each country, a minimum of 25 participants using MCSP were compared with people with dementia receiving ‘usual care’. Data were collected with the Stigma Impact Scale, Cornell Scale for Depression in Dementia, Global Deterioration Scale and two QoL scales (QoL-AD & DQoL). Differences in background characteristics were taken into account in the analyses.
ResultsThe preliminary analysis on 116 participants at baseline shows that the level of stigma was low to moderate. People felt more socially rejected in the UK than in Poland and Italy. The level of perceived stigmatization appeared negatively correlated with QoL areas and positively correlated with negative mood. Changes after 6 months will be presented.
ConclusionsIt is expected that after 6 months people living with dementia participating in MCSP will experience less stigma, as in contrast with usual care MCSP promotes social integration of people with dementia and person-centered support.
Disclosure of interestThe authors have not supplied their declaration of competing interest.
How do people with dementia respond to different types of art? An explorative study into interactive museum programs
- I. Hendriks, F. J. M. Meiland, K. Slotwinska, R. Kroeze, H. Weinstein, D. L. Gerritsen, R. M. Dröes
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- Journal:
- International Psychogeriatrics / Volume 31 / Issue 6 / June 2019
- Published online by Cambridge University Press:
- 18 December 2018, pp. 857-868
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Objectives:
Various art programs are available for people with dementia. These have been shown to contribute to the patient’s quality of life. But are all types of art suitable for this purpose and for the target group? This study investigated whether responsiveness during museum programs depends on the type of art work shown and/or characteristics of the person with dementia, such as severity of dementia or specific cognitive impairments.
Method:A cross-sectional observational study was conducted in which the responsiveness of people with dementia to different types of art was investigated as part of a study into the implementation of the Unforgettable program, an interactive guided museum tour program in Dutch museums for people with dementia.
Results:The appreciative and active responsiveness and interaction with others during the program appeared related to the severity of dementia, to specific cognitive impairments, and to type of artworks. People with more severe dementia responded less to art than people with mild dementia. Artworks with more natural elements revealed less interaction with others. Artifacts (i.e., objects not originally meant as artworks) evoked more reactions than artworks.
Conclusion:The study results are important to take into account when designing and offering art programs for people with dementia. Knowing which type of art works appeals most to (subgroups of) people with dementia will contribute to the optimization of art programs for this target group and to their active participation in such programs.
Toward an evidence-based implementation model and checklist for personalized dementia care in the community
- L. D. Van Mierlo, F. J. M. Meiland, H. P. J. Van Hout, R. M. Dröes
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- Journal:
- International Psychogeriatrics / Volume 28 / Issue 5 / May 2016
- Published online by Cambridge University Press:
- 03 December 2015, pp. 801-813
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Background:
The aim was to develop an evidence-based model that focuses specifically on factors that enable the provision of personalized care to facilitate and promote the implementation of community-based personalized dementia care interventions. The model is based on our previous research and additional literature.
Methods:The theoretical model of adaptive implementation was used as a framework to structure our model. Facilitators and barriers considered relevant for personalized care were extracted from our studies and additional literature, and were synthesized into the new evidence-based implementation model and checklist for personalized dementia care in the community.
Results:Extraction of data led to a composition of an evidence-based model for the implementation of personalized psychosocial care interventions that incorporates core components of personalized care. The model addresses several issues, e.g. how personalized care interventions should be offered and to whom; whether these are able to adapt to personal characteristics and needs of clients and informal caregivers; and whether both organizational management and staff that provide the intervention support personalized care and are able to focus on providing individualized care.
Conclusions:Our model provides a checklist for researchers, professional caregivers, and policy-makers who wish to develop, evaluate, or implement personalized care interventions.
Contributors
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- By Mitchell Aboulafia, Frederick Adams, Marilyn McCord Adams, Robert M. Adams, Laird Addis, James W. Allard, David Allison, William P. Alston, Karl Ameriks, C. Anthony Anderson, David Leech Anderson, Lanier Anderson, Roger Ariew, David Armstrong, Denis G. Arnold, E. J. Ashworth, Margaret Atherton, Robin Attfield, Bruce Aune, Edward Wilson Averill, Jody Azzouni, Kent Bach, Andrew Bailey, Lynne Rudder Baker, Thomas R. Baldwin, Jon Barwise, George Bealer, William Bechtel, Lawrence C. Becker, Mark A. Bedau, Ernst Behler, José A. Benardete, Ermanno Bencivenga, Jan Berg, Michael Bergmann, Robert L. Bernasconi, Sven Bernecker, Bernard Berofsky, Rod Bertolet, Charles J. Beyer, Christian Beyer, Joseph Bien, Joseph Bien, Peg Birmingham, Ivan Boh, James Bohman, Daniel Bonevac, Laurence BonJour, William J. Bouwsma, Raymond D. Bradley, Myles Brand, Richard B. Brandt, Michael E. Bratman, Stephen E. Braude, Daniel Breazeale, Angela Breitenbach, Jason Bridges, David O. Brink, Gordon G. Brittan, Justin Broackes, Dan W. Brock, Aaron Bronfman, Jeffrey E. Brower, Bartosz Brozek, Anthony Brueckner, Jeffrey Bub, Lara Buchak, Otavio Bueno, Ann E. Bumpus, Robert W. Burch, John Burgess, Arthur W. Burks, Panayot Butchvarov, Robert E. Butts, Marina Bykova, Patrick Byrne, David Carr, Noël Carroll, Edward S. Casey, Victor Caston, Victor Caston, Albert Casullo, Robert L. Causey, Alan K. L. Chan, Ruth Chang, Deen K. Chatterjee, Andrew Chignell, Roderick M. Chisholm, Kelly J. Clark, E. J. Coffman, Robin Collins, Brian P. Copenhaver, John Corcoran, John Cottingham, Roger Crisp, Frederick J. Crosson, Antonio S. Cua, Phillip D. Cummins, Martin Curd, Adam Cureton, Andrew Cutrofello, Stephen Darwall, Paul Sheldon Davies, Wayne A. Davis, Timothy Joseph Day, Claudio de Almeida, Mario De Caro, Mario De Caro, John Deigh, C. F. Delaney, Daniel C. Dennett, Michael R. DePaul, Michael Detlefsen, Daniel Trent Devereux, Philip E. Devine, John M. Dillon, Martin C. Dillon, Robert DiSalle, Mary Domski, Alan Donagan, Paul Draper, Fred Dretske, Mircea Dumitru, Wilhelm Dupré, Gerald Dworkin, John Earman, Ellery Eells, Catherine Z. Elgin, Berent Enç, Ronald P. Endicott, Edward Erwin, John Etchemendy, C. Stephen Evans, Susan L. Feagin, Solomon Feferman, Richard Feldman, Arthur Fine, Maurice A. Finocchiaro, William FitzPatrick, Richard E. Flathman, Gvozden Flego, Richard Foley, Graeme Forbes, Rainer Forst, Malcolm R. Forster, Daniel Fouke, Patrick Francken, Samuel Freeman, Elizabeth Fricker, Miranda Fricker, Michael Friedman, Michael Fuerstein, Richard A. Fumerton, Alan Gabbey, Pieranna Garavaso, Daniel Garber, Jorge L. A. Garcia, Robert K. Garcia, Don Garrett, Philip Gasper, Gerald Gaus, Berys Gaut, Bernard Gert, Roger F. Gibson, Cody Gilmore, Carl Ginet, Alan H. Goldman, Alvin I. Goldman, Alfonso Gömez-Lobo, Lenn E. Goodman, Robert M. Gordon, Stefan Gosepath, Jorge J. E. Gracia, Daniel W. Graham, George A. Graham, Peter J. Graham, Richard E. Grandy, I. Grattan-Guinness, John Greco, Philip T. Grier, Nicholas Griffin, Nicholas Griffin, David A. Griffiths, Paul J. Griffiths, Stephen R. Grimm, Charles L. Griswold, Charles B. Guignon, Pete A. Y. Gunter, Dimitri Gutas, Gary Gutting, Paul Guyer, Kwame Gyekye, Oscar A. Haac, Raul Hakli, Raul Hakli, Michael Hallett, Edward C. Halper, Jean Hampton, R. James Hankinson, K. R. Hanley, Russell Hardin, Robert M. Harnish, William Harper, David Harrah, Kevin Hart, Ali Hasan, William Hasker, John Haugeland, Roger Hausheer, William Heald, Peter Heath, Richard Heck, John F. Heil, Vincent F. Hendricks, Stephen Hetherington, Francis Heylighen, Kathleen Marie Higgins, Risto Hilpinen, Harold T. Hodes, Joshua Hoffman, Alan Holland, Robert L. Holmes, Richard Holton, Brad W. Hooker, Terence E. Horgan, Tamara Horowitz, Paul Horwich, Vittorio Hösle, Paul Hoβfeld, Daniel Howard-Snyder, Frances Howard-Snyder, Anne Hudson, Deal W. Hudson, Carl A. Huffman, David L. Hull, Patricia Huntington, Thomas Hurka, Paul Hurley, Rosalind Hursthouse, Guillermo Hurtado, Ronald E. Hustwit, Sarah Hutton, Jonathan Jenkins Ichikawa, Harry A. Ide, David Ingram, Philip J. Ivanhoe, Alfred L. Ivry, Frank Jackson, Dale Jacquette, Joseph Jedwab, Richard Jeffrey, David Alan Johnson, Edward Johnson, Mark D. Jordan, Richard Joyce, Hwa Yol Jung, Robert Hillary Kane, Tomis Kapitan, Jacquelyn Ann K. Kegley, James A. Keller, Ralph Kennedy, Sergei Khoruzhii, Jaegwon Kim, Yersu Kim, Nathan L. King, Patricia Kitcher, Peter D. Klein, E. D. Klemke, Virginia Klenk, George L. Kline, Christian Klotz, Simo Knuuttila, Joseph J. Kockelmans, Konstantin Kolenda, Sebastian Tomasz Kołodziejczyk, Isaac Kramnick, Richard Kraut, Fred Kroon, Manfred Kuehn, Steven T. Kuhn, Henry E. Kyburg, John Lachs, Jennifer Lackey, Stephen E. Lahey, Andrea Lavazza, Thomas H. Leahey, Joo Heung Lee, Keith Lehrer, Dorothy Leland, Noah M. Lemos, Ernest LePore, Sarah-Jane Leslie, Isaac Levi, Andrew Levine, Alan E. Lewis, Daniel E. Little, Shu-hsien Liu, Shu-hsien Liu, Alan K. L. Chan, Brian Loar, Lawrence B. Lombard, John Longeway, Dominic McIver Lopes, Michael J. Loux, E. J. Lowe, Steven Luper, Eugene C. Luschei, William G. Lycan, David Lyons, David Macarthur, Danielle Macbeth, Scott MacDonald, Jacob L. Mackey, Louis H. Mackey, Penelope Mackie, Edward H. Madden, Penelope Maddy, G. B. Madison, Bernd Magnus, Pekka Mäkelä, Rudolf A. Makkreel, David Manley, William E. Mann (W.E.M.), Vladimir Marchenkov, Peter Markie, Jean-Pierre Marquis, Ausonio Marras, Mike W. Martin, A. P. Martinich, William L. McBride, David McCabe, Storrs McCall, Hugh J. McCann, Robert N. McCauley, John J. McDermott, Sarah McGrath, Ralph McInerny, Daniel J. McKaughan, Thomas McKay, Michael McKinsey, Brian P. McLaughlin, Ernan McMullin, Anthonie Meijers, Jack W. Meiland, William Jason Melanson, Alfred R. Mele, Joseph R. Mendola, Christopher Menzel, Michael J. Meyer, Christian B. Miller, David W. Miller, Peter Millican, Robert N. Minor, Phillip Mitsis, James A. Montmarquet, Michael S. Moore, Tim Moore, Benjamin Morison, Donald R. Morrison, Stephen J. Morse, Paul K. Moser, Alexander P. D. Mourelatos, Ian Mueller, James Bernard Murphy, Mark C. Murphy, Steven Nadler, Jan Narveson, Alan Nelson, Jerome Neu, Samuel Newlands, Kai Nielsen, Ilkka Niiniluoto, Carlos G. Noreña, Calvin G. Normore, David Fate Norton, Nikolaj Nottelmann, Donald Nute, David S. Oderberg, Steve Odin, Michael O’Rourke, Willard G. Oxtoby, Heinz Paetzold, George S. Pappas, Anthony J. Parel, Lydia Patton, R. P. Peerenboom, Francis Jeffry Pelletier, Adriaan T. Peperzak, Derk Pereboom, Jaroslav Peregrin, Glen Pettigrove, Philip Pettit, Edmund L. Pincoffs, Andrew Pinsent, Robert B. Pippin, Alvin Plantinga, Louis P. Pojman, Richard H. Popkin, John F. Post, Carl J. Posy, William J. Prior, Richard Purtill, Michael Quante, Philip L. Quinn, Philip L. Quinn, Elizabeth S. Radcliffe, Diana Raffman, Gerard Raulet, Stephen L. Read, Andrews Reath, Andrew Reisner, Nicholas Rescher, Henry S. Richardson, Robert C. Richardson, Thomas Ricketts, Wayne D. Riggs, Mark Roberts, Robert C. Roberts, Luke Robinson, Alexander Rosenberg, Gary Rosenkranz, Bernice Glatzer Rosenthal, Adina L. Roskies, William L. Rowe, T. M. Rudavsky, Michael Ruse, Bruce Russell, Lilly-Marlene Russow, Dan Ryder, R. M. Sainsbury, Joseph Salerno, Nathan Salmon, Wesley C. Salmon, Constantine Sandis, David H. Sanford, Marco Santambrogio, David Sapire, Ruth A. Saunders, Geoffrey Sayre-McCord, Charles Sayward, James P. Scanlan, Richard Schacht, Tamar Schapiro, Frederick F. Schmitt, Jerome B. Schneewind, Calvin O. Schrag, Alan D. Schrift, George F. Schumm, Jean-Loup Seban, David N. Sedley, Kenneth Seeskin, Krister Segerberg, Charlene Haddock Seigfried, Dennis M. Senchuk, James F. Sennett, William Lad Sessions, Stewart Shapiro, Tommie Shelby, Donald W. Sherburne, Christopher Shields, Roger A. Shiner, Sydney Shoemaker, Robert K. Shope, Kwong-loi Shun, Wilfried Sieg, A. John Simmons, Robert L. Simon, Marcus G. Singer, Georgette Sinkler, Walter Sinnott-Armstrong, Matti T. Sintonen, Lawrence Sklar, Brian Skyrms, Robert C. Sleigh, Michael Anthony Slote, Hans Sluga, Barry Smith, Michael Smith, Robin Smith, Robert Sokolowski, Robert C. Solomon, Marta Soniewicka, Philip Soper, Ernest Sosa, Nicholas Southwood, Paul Vincent Spade, T. L. S. Sprigge, Eric O. Springsted, George J. Stack, Rebecca Stangl, Jason Stanley, Florian Steinberger, Sören Stenlund, Christopher Stephens, James P. Sterba, Josef Stern, Matthias Steup, M. A. Stewart, Leopold Stubenberg, Edith Dudley Sulla, Frederick Suppe, Jere Paul Surber, David George Sussman, Sigrún Svavarsdóttir, Zeno G. Swijtink, Richard Swinburne, Charles C. Taliaferro, Robert B. Talisse, John Tasioulas, Paul Teller, Larry S. Temkin, Mark Textor, H. S. Thayer, Peter Thielke, Alan Thomas, Amie L. Thomasson, Katherine Thomson-Jones, Joshua C. Thurow, Vzalerie Tiberius, Terrence N. Tice, Paul Tidman, Mark C. Timmons, William Tolhurst, James E. Tomberlin, Rosemarie Tong, Lawrence Torcello, Kelly Trogdon, J. D. Trout, Robert E. Tully, Raimo Tuomela, John Turri, Martin M. Tweedale, Thomas Uebel, Jennifer Uleman, James Van Cleve, Harry van der Linden, Peter van Inwagen, Bryan W. Van Norden, René van Woudenberg, Donald Phillip Verene, Samantha Vice, Thomas Vinci, Donald Wayne Viney, Barbara Von Eckardt, Peter B. M. Vranas, Steven J. Wagner, William J. Wainwright, Paul E. Walker, Robert E. Wall, Craig Walton, Douglas Walton, Eric Watkins, Richard A. Watson, Michael V. Wedin, Rudolph H. Weingartner, Paul Weirich, Paul J. Weithman, Carl Wellman, Howard Wettstein, Samuel C. Wheeler, Stephen A. White, Jennifer Whiting, Edward R. Wierenga, Michael Williams, Fred Wilson, W. Kent Wilson, Kenneth P. Winkler, John F. Wippel, Jan Woleński, Allan B. Wolter, Nicholas P. Wolterstorff, Rega Wood, W. Jay Wood, Paul Woodruff, Alison Wylie, Gideon Yaffe, Takashi Yagisawa, Yutaka Yamamoto, Keith E. Yandell, Xiaomei Yang, Dean Zimmerman, Günter Zoller, Catherine Zuckert, Michael Zuckert, Jack A. Zupko (J.A.Z.)
- Edited by Robert Audi, University of Notre Dame, Indiana
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- The Cambridge Dictionary of Philosophy
- Published online:
- 05 August 2015
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- 27 April 2015, pp ix-xxx
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Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project
- F. J. M. Meiland, B. J. J. Hattink, T. Overmars-Marx, M. E. de Boer, A. Jedlitschka, P. W. G. Ebben, Ir. I. N. W. Stalpers-Croeze, S. Flick, J. van der Leeuw, I. P. Karkowski, R. M. Dröes
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- Journal:
- International Psychogeriatrics / Volume 26 / Issue 5 / May 2014
- Published online by Cambridge University Press:
- 10 February 2014, pp. 769-779
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Background:
In the European Rosetta project three separate, previously developed, ICT systems were improved and integrated to create one modular system that helps community-dwelling people with mild cognitive impairment and dementia in different stages of the disease. The system aims to support them in daily functioning, monitor (deviations from) patterns in daily behaviour and to automatically detect emergency situations. The study aimed to inventory the end users’ needs and wishes regarding the development and design of the new integrated Rosetta system, and to describe the to be developed Rosetta system.
Methods:Qualitative user-participatory design with in total 50 persons: 14 people with dementia, 13 informal carers, 6 professional carers, 9 dementia experts, 7 care partners within the project, and 1 volunteer. In the Netherlands user focus group sessions were performed and in Germany individual interviews. Dementia experts were consulted by means of a questionnaire, an expert meeting session, and interviews.
Results:Persons with dementia and informal carers appreciated the following functionalities most: help in cases of emergencies, navigation support and the calendar function. Dementia experts rated various behaviours relevant to monitor in order to detect timely changes in functioning, e.g. eating, drinking, going to the toilet, taking medicine adequately, performance of activities and sleep patterns. No ethical issues regarding the use of sensors and cameras were mentioned.
Conclusion:The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.