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Art and Dementia A survey into reports on active participation in the arts of aging people with dementia Kunstbeoefening door ouderen met dementie; Inventarisatie van bestaand onderzoek Utrecht, July 2012 / juli 2012 Marina Brittner, Maastricht University / Universiteit Maastricht

Colophon Research and text: Marina Brittner, BA student Arts & Culture, Maastricht University. Kunstfactor Consultant: Sieneke de Rooij Partners Reflection group: Maarten Dekker, Stichting Kunst en Dementie (Art and Dementia Foundation); Annette Hendrikx en Ruud Hendriks, Faculty of Arts and Social Sciences, Maastricht University © Kunstfactor Utrecht, July 2012

Art and Dementia – A survey into reports on active participation in the arts of aging people with dementia is a publication of Kunstfactor, the national institute for the voluntary arts. Unless otherwise agreed upon, Kunstfactor allows you as reader to download and print this publication for your own use. It is not permitted to make any changes to the content, text or otherwise. When quoting from the publication it is compulsory to acknowledge the source. It is not possible to transfer the right of use to third parties. The transfer of intellectual property rights, including copyright, on the work composed or created by Kunstfactor is not included in the right of use. Kunstfactor is the national institute for the voluntary arts in the Netherlands. The national institute is a key discussion partner for governmental bodies, policy makers and opinion leaders, and stimulate the debate on the voluntary arts. We advise, inform, research, initiate and inspire. We establish connections within and outside the voluntary arts sector, both nationally and internationally.

Colofon Onderzoek en tekst: Marina Brittner, BA student Arts & Culture, Universiteit Maastricht Adviseur Kunstfactor: Sieneke de Rooij Klankbordgroep: Maarten Dekker, Stichting Kunst en Dementie; Annette Hendrikx en Ruud Hendriks, Centrum voor Gender en Diversiteit, Faculteit der Cultuur- en Maatschappijwetenschappen, Universiteit van Maastricht © Kunstfactor Utrecht, juli 2012 Kunstbeoefening door ouderen met dementie, een inventarisatie van bestaand onderzoek is een uitgave van Kunstfactor, sectorinstituut amateurkunst. Tenzij anders overeengekomen, geeft Kunstfactor u als lezer toestemming deze uitgave voor eigen gebruik te downloaden en af te drukken. Het is niet toegestaan om inhoudelijk, tekstueel of anderszins wijzigingen aan te brengen. Bij citeren is bronvermelding verplicht. Overdracht aan derden van het gebruiksrecht is uitgesloten. Het gebruiksrecht geldt niet voor commerciële doeleinden. De overdracht van de rechten van intellectueel eigendom, waaronder het auteursrecht, rustend op de door Kunstfactor opgestelde of ontworpen werken zijn bij het gebruiksrecht niet inbegrepen. Kunstfactor, sectorinstituut amateurkunst, zet zich in voor een sterke amateurkunstsector. Dit doen we vanuit de overtuiging dat actieve kunstbeoefening een bijdrage levert aan de persoonlijke ontwikkeling van mensen en aan een creatieve, harmonieuze samenleving.

Art and Dementia; A survey into reports on active participation in the arts of aging people with dementia Kunstfactor, Utrecht – July 2012 | 2

Contents - Inhoud Voorwoord

4

Inleiding

5

1. 1.1 1.2 1.3 1.4 1.5 1.6

7 7 7 8 9 9 9

Enclosure Research project ‘Voorbij autonomie en taal’ About Kunstfactor Formal matters Research method Sample list of search modules, databases and journals used in my search process The findings - literature lists

2. Kunstbeoefening met en door ouderen met dementie – Nederland / Nederlandstalig 2.1 Artikelen / Boeken 2.2 Websites (met projecten of artikelen) 2.3 Interactieve Kunstprojecten/ Kunstinstallaties

11 11 12 15

3. 3.1 3.2

Art and dementia – Other Countries Articles / Books (with author) Websites

17 17 23

4.

Some interesting further reading that did not qualify for the main report 26

5. 5.1 5.2 5.3 5.4 5.5 5.6 5.7 5.8

Summaries Basting, God is a talking horse Beshwate, Art as therapy Montgomery-Smith, Musical exercises for the mind Mottram, Art Therapy with Clients Who have Dementia Peisah, Lawrence and Reutens, Creative solutions for severe dementia with BPSD Rusted, Sheppard, Waller, […] Art Therapy for Older People with Dementia Waarde, Congres ‘Kunst of vliegwerk’ Wikipedia article: Art and dementia

29 30 32 33 34 35 37 39 40

6.

A first reflection on my findings

41


Voorwoord Via de stichting Special Arts bereikte Kunstfactor in 2011 de vraag om inventarisatie van onderzoek naar de combinatie kunstbeoefening en ouderen met dementie. Kunstfactor hield zich al bezig met het thema Ouderen en kunstbeoefening, en richt zich hierbij sinds 2009 op de verbinding van kunstbeoefening met de wereld van de ouderen(zorg). Hier gaat het deels om gezonde, fitte en draagkrachtige ouderen, maar ook is er aandacht voor ouderen met beperkingen en met een krappe beurs. Kunstfactor nam in samenwerking met twee ouderenfondsen het initiatief tot de ontwikkeling van een faciliterings- en stimuleringsprogramma voor ouderen en kunstbeoefening Art and Dementia – Kunstbeoefening door ouderen met dementie kan worden gezien als een verdieping op een deelonderwerp: de zingeving voor ouderen met dementie door het actief aan kunst doen en de eigen creatieve vermogens gebruiken. En dan bedoelen we kunst creëren onder leiding van kunstenaars, activiteiten die meer verdiepend werken dan alleen activiteitenbegeleiding. Dit onderscheiden we nadrukkelijk van het passief beleven van kunst, bijvoorbeeld het luisteren naar muziek en literatuur, kijken naar dans of theater, een tentoonstelling bezoeken. In de actieve kunstbeoefening gaat het om het zelf doen: iets maken. Soms net als vroeger, toen men nog gezond was. En soms voor het allereerst. Deze inventarisatie van bestaand onderzoek uit binnen- en buitenland kwam tot stand op initiatief van Kunstfactor en is uitgevoerd in samenspraak met de Universiteit Maastricht en stichting Kunst & Dementie. Kunstfactor wil met dit eerste overzicht bijdragen aan de verspreiding van kennis over de waarde van kunstbeoefening voor ouderen met dementie. Wij hopen dat kunstbeoefening voor deze groep ouderen meer aandacht zal krijgen en in de toekomst toenemend, en structureel, zal worden ondersteund. Tom de Rooij, directeur-bestuurder


Inleiding U leest Art and Dementia / Kunstbeoefening door ouderen met dementie. Deze publicatie is een inventarisatie van bestaand onderzoek naar actieve kunstbeoefening door (en met) ouderen die leven met dementie. In deze inleiding stippen wij kort aan hoe u deze lijst en de omringende artikelen moet opvatten en hoe u ze kunt gebruiken. Voor wie is de inventarisatie bedoeld, vanuit welke achtergrond is ze tot stand gekomen, wat zijn de gehanteerde criteria bij de zoektocht naar gepubliceerd onderzoek, waarom is de publicatie tweetalig, en hoe is ze ingedeeld? Doel De inventarisatie van onderzoek naar amateurkunst, ouderen en dementie is van belang voor professionals en beleidsmakers in de kunstbeoefening en ouderenzorg, (gezondheids)zorg, en geriatrie. Het vindbaar maken van onderzoeken kan ook de organisaties die zich hiermee bezighouden met elkaar in contact brengen. Deze inventarisatie kan zo bijdragen aan kennisuitbreiding voor de professionals op de genoemde gebieden. Kunstfactor hoopt op effecten als kennisvermeerdering en –verspreiding van dit specifieke onderwerp in de vakgebieden kunstbeoefening, (ouderen)zorg, creatieve therapie, geriatrie, en sociologie. Vooronderzoek toonde aan dat het onderwerp ‘Kunstbeoefening, ouderen en dementie’ nog maar schaars in beeld is gebracht. Dat betekent dat de vondsten, zeker indien ze met elkaar in verband gebracht kunnen worden, een nieuw licht kunnen werpen op de combinatie Ouderen – dementie – kunstbeoefening. Een inventarisatie van (schaars) onderzoek kan geïnteresseerde partners aanmoedigen het onderwerp verder op te pakken en uit te diepen. Mogelijk ontstaat op termijn een (bescheiden) nieuw netwerk van professionals en organisaties die het thema in hun beleid willen opnemen. Samenwerking Deze inventarisatie is tot stand gekomen in relatie met de Universiteit Maastricht. De stichting Kunst & Dementie, die over dit onderwerp de afgelopen jaren twee conferenties organiseerde (2009 en 2011) trad op als meedenker in het inhoudelijk overleg. Werkwijze Annette Hendrikx en Ruud Hendriks van de Faculteit der Cultuur- en Maatschappijwetenschappen hebben het onderzoek inhoudelijk begeleid. Zij werkten al enkele jaren aan onderzoeken rondom dementie in het Maastrichtse onderzoeksproject Voorbij Autonomie en taal: naar een Disability Studies’ perspectief op dementie. Annette Hendrikx, onderzoeker, vertelt hierover: ‘De vraag die Kunstfactor in maart 2012 bij de Universiteit Maastricht neerlegde, bood een interessante gelegenheid voor het opzetten van een stageproject. Deze vraag betrof de inventarisatie van publicaties over actieve kunstbeoefening met en door mensen met dementie. Die vraag werd leidend voor de onderzoeksstage die is uitgevoerd door Marina Brittner, derdejaars Bachelor student Arts & Culture, vanuit haar specialisatie Cultures of Knowledge and Technology. Een onderzoeksstage biedt de student de gelegenheid om onderzoeksvaardigheden in de praktijk te brengen en verder te ontwikkelen, inzicht te verwerven in een empirisch domein, te reflecteren op empirisch materiaal en daarover te rapporteren aan de opdrachtgever. Zij werd bij haar stage begeleid vanuit de faculteit en de stageinstelling. Het theoretisch kader dat Marina Brittner in haar stage heeft gebruikt, sluit nauw aan bij de uitgangspunten en inzichten van het Maastrichtse onderzoeksproject ‘Voorbij Autonomie en taal: naar een Disability Studies’ perspectief op dementie’ (gesubsidieerd door Zonw/Disability Studies in Nederland), dat een bijdrage beoogt te leveren aan nuancering van de beeldvorming rond dementie. Dit DSiN project richt zich onder meer op de bijzondere wijze waarop kunsten


proberen mensen met dementie in het hier en nu te bereiken en hen in staat stellen zich creatief te uiten. Ook vanuit het Maastrichtse project wordt met veel interesse uitgekeken naar de resultaten van deze onderzoeksstage. Een breder overzicht van Nederlandse en relevante buitenlandse kunsten dementie praktijken, draagt bij aan de benodigde kritische reflectie op hoe en waarom kunst kan werken.’ Criteria Er is allereerst gezocht naar gepubliceerd, bij voorkeur wetenschappelijk, onderzoek naar actieve kunstbeoefening van ouderen met dementie. Daarnaast kwamen wij verschillende zijsporen tegen, omdat het onderwerp op natuurlijke wijze grenst aan kunsttherapie en activiteitenbegeleiding. In de praktijk is het erg moeilijk om die grenzen volkomen dicht te houden. Daardoor hebben we hier en daar concrete praktijkvoorbeelden (projecten) meegenomen, mits deze: - de kunstbeoefening met/door ouderen met dementie (dus geen therapie of activiteitenbegeleiding als hoofddoel) behandelen; - georganiseerd en uitgevoerd worden door kunstenaars, of voor die uitvoering opgezet zijn door (zorg)instellingen; - zich bevinden op het gebied van alle kunstdisciplines: dans, muziek, beeldend, muziek, theater, schrijven/vertellen - zijn afgerond, geëvalueerd en beschreven. Nederlands / Engels Al lezend komt u stukken in het Nederlands en in het Engels tegen. Waarom wij deze publicatie 2-talig presenteren, heeft twee redenen. Allereerst is een groot deel van de gevonden publicaties Engelstalig. Wie deze publicaties wil raadplegen, zal zich met de oorspronkelijke tekst in het Engels moeten bezighouden. Daarbij komt dat veel onderzoeken van de Universiteit Maastricht in het Engels worden gepubliceerd, omdat ze daarmee ook toegankelijk zijn voor haar buitenlandse relaties. Voor de Nederlandstalige vondsten (onderzoeken, websites) is dit echter niet het geval. Omdat onze buitenlandse contacten deze onderzoeken en sites niet tot zich kunnen nemen, hebben wij geen Nederlandse titels en bijkomende informatie daarover vertaald. Kunstfactor richt zich met haar publicaties landelijk op Nederlandse professionals en gaat ervan uit dat de publicatie voornamelijk in Nederland gebruikt zal worden. Indeling en gebruik Hoofdstuk 1, Enclosure, introduceert het onderwerp en licht de werkwijze van Marina Brittner bij haar onderzoek toe. Hoofdstuk 2 opent de inventarisatie met de vondsten uit Nederland in de volgorde Literatuur, Websites en Interactieve kunstprojecten of installaties. Hoofdstuk 3 inventariseert volgens dezelfde indeling de vondsten buiten Nederland. Hoofdstuk 4 biedt een overzicht van vondsten die strikt genomen niet direct aan de gestelde criteria voldoen, maar toch het vermelden waard zijn. Hoofdstuk 5, Summaries, sluit af met een vijftal meer uitgebreide samenvattingen: besprekingen van literatuur die bijzonder relevant is. Kunstfactor wil met deze inventarisatie bijdragen aan de verspreiding van kennis over de waarde van kunstbeoefening voor ouderen met dementie. Wij hopen dat kunstbeoefening voor deze groep ouderen meer aandacht zal krijgen en in de toekomst meer zal worden ondersteund.


1.

Enclosure

This internship was provided within the specialization Cultures of Knowledge and Technology of the Maastricht University Bachelors programme Arts and Culture. The supervision was carried out by members of the project group ‘Voorbij autonomie en taal’ and Kunstfactor, the national institute for the voluntary arts. In the following I will therefore also provide a brief description of the work of these two parties.

1.1

Research project ‘Voorbij autonomie en taal’

The research project ‘Voorbij autonomie en taal - naar een Disability Studies’ perspectief op dementie’ (Maastricht University supported by ZonMW, DSiN) was created to develop a Disability Studies’ perspective on dementia. It was designed to contribute a theoretical framework to the discourse on the participation of people with dementia as full citizens (or subjects) in society. In general, when thinking about what it means to be a subject the emphasis is directed on the importance of a person's self-awareness, freedom of choice and autonomy. The person with dementia, who is growing ever more dependent on his/her environment, is being excluded from this. The researchers of this project, however, doubt that the subject gets lost irrevocably during the ongoing dementia process. Besides, and in contrast to, the dominating imaging they investigate innovative social practices in which people with dementia are approached in their particular nature, rather than as an object of fear and unilateral care. The role of people with dementia is being investigated in literature and film, clowning, supporting technology and artistic practices. With an interactive show for the audience of Alzheimer cafés the project also steps off the beaten academic track to encourage and stimulate the person with dementia being thought of as a subject. During this internship the theoretical framework was therefore provided by these thoughts on dementia and the subject. I have consequently also tried to emphasis how the participants in the projects I found were approached, and have taken this into account for my reflection at the end of this report.

1.2

About Kunstfactor

Kunstfactor is the Dutch national institute for ‘the amateur arts’ and the contracting authority for this internship. As such Kunstfactor is a specialist contact and key discussion partner for governmental bodies, policy makers and opinion leaders, and stimulates the debate on the voluntary arts. It advises, informs, researches, initiates and inspires. Furthermore, Kunstfactor tries to establish links and connections within and outside the voluntary arts sector, both nationally and internationally. During the internship I was part of the working group for art practices with elderly people suffering from dementia. The term art here refers to a wide range of creative human activities such as drawing, painting, collage, music, acting, writing, storytelling, etc. performed by nonprofessionals. This working group specializes in the use and importance of amateur art practices for and with elderly people and people living with dementia. During my research on this subject I focused on the active participation of people living with dementia in the arts. The findings will first of all focus on Dutch literary publications – whether projects or research conducted in the Netherlands or only described in Dutch. I will then move on to innovative practices and research conducted in other countries.


The objectives of the internship provided by Kunstfactor and developed in our talks were the following: - make an inventory of literature on concrete practices (i.e. projects) of art with and by older people with dementia (in fact not therapy nor simple activity guidance) which have already taken place and have been evaluated and described. These projects can, for example, be carried out or developed by artists or institutions and range throughout the field of all art disciplines: dance, music, imaging, theatre, writing/storytelling (etc.) It is important, however, that the participants with dementia are (creatively) actively engaged themselves. Nevertheless, with rising interest and insight in the topic ever more things seemed interesting and relevant to me which made it increasingly difficult to choose from the findings and dismiss so many of them. Still, as it turned out I found it even harder, if not impossible, to completely leave out all of the findings concerned with any kind of creative therapy (i.e. art therapy, music therapy, drama therapy). According to the guidelines provided by Kunstfactor I was supposed to restrict my findings to literature concerning the use of art that is more than plain activity but not yet therapy, but I found it very difficult to find such. Most of the literature seems to apply a kind of universal goal and reason to engage in that kind of activity, namely therapeutic effects. Even though many texts were very interesting and useful and gave many examples of art used to engage people living with dementia in creative activity they still placed it all under the ‘umbrella of therapy’ Yet, while reading these texts I often found them very applicable to the general idea of using art for people with dementia whereas the therapy aspect appeared fairly negligible to me. This is why I still included many of these texts in this survey. Furthermore, even if the therapy aspect was strongly expressed in the texts they still offered very useful information on art practices that can be done and therefore, in my view, still retained their relevance. In addition to that, there is quite an extensive amount of literature available on the subject of the use of art therapy for dementia and most of the researches that I have come across also focus on the relationship between these two areas. If available, any contact information such as sites and people that can be contacted for advice etc, have been collected as well. The inventory has been designed to assist employees in the field of geriatric care but also artists who may, for instance, want to become active in this field. The purpose of this inventory is therefore to decode the information using short descriptions that provide the reader an initial impression of the texts. Ideally, this report will ultimately serve as a guide for people working with individuals living with dementia that are looking for (alternative) ways to enrich the lives of the people they care for. At the end of this report I will also provide my reflection on the findings, referring to what I have discussed and presented here.

1.3

Formal matters

The internship took place in the period from 14 February 2012 to 31 May 2012. In the weeks up to 08 April 2012 I devoted about 2 days a week to research and reading. After that the plan was to work 40 hours a week on the inventory. In order to coordinate my work, I kept in regular email contact with my supervisors of Maastricht University – Ruud Hendriks and in particular Annette Hendrikx, both of whom are involved in the research project. We also arranged meetings, regularly at first and then later only when it was necessary to go through some points together. Sieneke de Rooij supervised me on behalf of the internship institution. We scheduled one meeting at the beginning with everyone involved in this internship. Another meeting was scheduled halfway through the internship, with an additional ‘final’ at the end. Sieneke de Rooij and I kept in constant throughout the internship via email and phone.


1.4 Research method In my search, I tried to obtain an overview of results and available publications as well as websites, initiatives, keywords (such as reappearing names, published and conducted research, etc., in the field of the arts and dementia. I have therefore used keywords and search phrases such as ‘art therapy in dementia care’ ‘art and dementia’, ‘creative (art) practices/projects in dementia’, ‘art projects with dementia (patients)’, ‘music therapy and dementia’, ‘drama therapy and dementia’, ‘kunst en dementie’, ‘kunst therapie en dementie’, ‘creatieve praktijken bij/met dementie’, ‘projecten kunst en dementie’, ‘muziek en dementie’, ‘drama therapie en dementie’, ‘Kunst und Demenz’, ‘arts et démence’. I did this in the initial phase to also get an impression of the international interest in the field which indeed exists. German sources were also particularly interesting due to a conference on art and dementia that recently took place. I also thought it would be interesting to have some variation seeing that I speak several languages. Still, my findings are focused on the first two languages and the others are just some additions. Moreover, as my search developed, I increasingly focused on scientific material as in the meetings with Kunstfactor the wish for (semi-)scientific sources was often expressed. This stands in contrast to what was initially discussed about finding all kinds of available literature, including gray literature. Hence, I for example did not search Lexis Nexis. Although I made use of all of these keywords, it was only towards the end that I used the more specific ones such as music therapy and drama therapy, also because I then dared to really use therapy as a search term. In that sense there are of course more publications available, especially in the field of the particular art disciplines that have not yet been included.

1.5

Sample list of search modules, databases and journals used in my search process

Although most databases are English they still produced Dutch results. - Initial phase: google, google scholar (provided me with (most of) the websites I have included in my findings) Advanced search: I used the following databases that I could exclusively access via Maastricht University. They usually require subscription, which is very expensive. For this reason I thought that these are particularly interesting to Kunstfactor and my desired readers. Furthermore, these databases offer reliable scientific research texts that thereby improve the quality of the findings. Cambridge Journals, Ebsco, (PsycArticles), InformaHealthcare, JStor, Oxford Journals, OAIster, PiCarta (NCC+OLC), ScienceDirect, Scirus, Springerlink, Web of Science/Web of knowledge these include journals such as: Activities, Adaptation & Aging, Applied arts in health, Art therapy, Brain and Cognition, Dementia, Denkbeeld, Dramatherapy, Generations, Gerontology, International Psychogeriatrics, Journal of dementia care, Journal on active aging, Journal of the Royal Society for the Promotion of Health, Gerontology, Geriatric Nursing, Musictherapy, TDR, Zorgvisie, etc. These journals are among those that produced relevant results in my search (see list). Furthermore, Jessica Kingsley Publishers has published some books on the topic (see list).

1.6 The findings - literature lists On the following pages you will find a collection of what I consider to be the most relevant literature that I found in my search process. These have been chosen according to the particular objectives mentioned above and extended by the field of art therapy as previously explained. All


of the findings were retrieved in the period March to June 2012. Furthermore, each of the references is provided with a brief explanation to give you, the reader, an impression of what the text or project is about. Most of the references also contain a link or the DOI from which you can retrieve the online article or book (abstract). In general, the literature lists are split in two – Nederland-Nederlandstalig (The Netherlands or Dutch language), and Other countries. Furthermore, I have ordered the lists alphabetically within the following subsections: 1. Books and articles 2. Websites 3. (Interactive) Art installations Please note again that the findings also include those on art therapies (and music or drama therapies). I have included them as they constitute a major part of the research conducted on the subject. Furthermore, the therapy sessions are basically sessions that offer people with dementia material, time and space to express and fully develop themselves creatively. The art therapist often only assists in giving the participants an initial stimulus to start their creative work and after that only uses the finished artworks to draw conclusions about the person’s inner state. Still, the creative process of a person with dementia in an art therapy (group) session or in a plain art-activity-session remains largely, if not entirely, the same.


2.

Kunstbeoefening met en door ouderen met dementie – Nederland / Nederlandstalig

2.1

Artikelen / Boeken

Algra, J. Geen maskerades meer http://www.kunstfactor.nl/engine?app=kunstfactor&service=classmanager:6783&cmd=open&i d=4612&source=zoeken.vm%3Fusecache=true Over kunst (theater) met ouderen met of zonder dementie in Eindhovens woonzorgcentrum Peppelrode Behandelt alle deelnemers, dus ook mensen met dementie, als professionals Bruin, de, S., Oosting, S., Zijpp, van der, A., Enders-Slegers, M.-J., Schols, J. (2010). The Concept of Green Care Farms for Older People with Dementia: An Integrative Framework. Dementia, February 2010; vol. 9, 1: pp. 79-128. Interesting in general (environment for people with dementia etc) Relevance of article for this report starts p. 95 Studies to date mainly focus on recreational and art activities (‘stimulationoriented interventions’) and on physical activities, All are relevant for older people with dementia attending day care Table that lists literature reviews on that matter Diesfeldt, H.(2004). Onder de loep. Met dans meer mans: De invloed van dansen op mensen met dementie. Denkbeeld Volume 16, Nummer 6 (2004), 183-184 DOI: http://dx.doi.org/10.1007/BF03059170 Dansen heeft een positieve invloed op mensen met dementie (beweging, gezondheid, Mensen worden spraakzaam en beter te verstaan: hoger niveau van verbale vaardigheden) Omschrijving van verschillende projecten (studie uit Finland (danstherapie met mensen met dementie); Bazel en Freiburg) Hoe onderzoek de effecten duidt Kunst en dementie - Durf anders te denken In: AS; vol. 29 (2008), afl. 12, pag. 30-35 (6) / 2008 Kunst en dementie - Durf anders te denken In: AS : maandblad aktiviteitensector : maandblad voor hulpvragers en hulpverleners in de aktiviteitensector, ISSN 0168-2857 Numbering: vol. 29 (2008), issue 12, page 30-35 (6) Subject journal: adult educational theory Mersy, H. (2007) Biedt kunst als therapiemiddel een meerwaarde aan mensen met dementie? Hogeschool West-Vlaanderen Online te vinden via: http://dspace.howest.be/bitstream/10046/325/1/Mersy_Hetty.pdf Bachelor scriptie over kunst als meerwaarde voor mens Omschrijving van haar project met mensen met dementie ‘Bewoners hebben gedurende 3 maanden getekend, geschilderd, geknipt, geplakt, geboetseerd’ Penet, E. (2005). Kunst met een glimlach. Creatieve activiteiten als therapiemiddel bij zorgbehoevende ouderen in een RVT Online te vinden via: http://dspace.howest.be/bitstream/10046/62/1/Penet_Elke.pdf


Bachelor scriptie Theoretisch Over begeleiding van mensen met dementie en het belang van creatieve activiteiten (tekenen, schilderen,...) Geeft tips zoals: laat de mensen met dementie zelf creatief werken met weinig opeenvolgende stappen om het voor hen begrijpelijk te maken Rynck, P. De, & Teller, M. (2011). Een inspirerende gids: dementie-vriendelijke gemeenten. De Koning Boudewijnstichting, Brederodestraat 21 te 1000 Brussel Online te vinden via: http://www.kbs-frb.be/uploadedFiles/KBSFRB/05%29_Pictures,_documents_and_external_sites/09%29_Publications/NL_DEMENTIE VRIENDELIJKE-GEMEENTEN.pdf Noemen vaker kunst, ook muziek, dans etc. als belangrijke aandachtspunten in een dementie-vriendelijke gemeente Noemt bijv. project Phare ‘Communiceren met mensen met dementie, hoe doe je dat?’ met toneelspelende senioren of project met kunst studenten en mensen met dementie Kunst krijgt steeds meer aandacht om leven van mensen met dementie te verrijken Tentoonstelling ‘Kunst en dementie’ in de Pijp (2009) http://www.amsterdam.nl/@280602/pagina/ Er worden ‘al ruim vijftien jaar dagactiviteiten georganiseerd voor licht dementerende mensen. Samen met kunstenaar Willem Bakkum hebben zij tijdens de dagactiviteit schilderijen gemaakt. Samen iets creëren helpt het taboe op dementie te doorbreken.’ Vitalis: Best practice - Vitalis WoonZorg Groep haalt met kunst het beste naar boven bij ouderen met dementie. In Zorgvisie; vol. 41 (2011), afl. 11, pag. 13-16 (3) / 2011 Best practice kunst van mensen met dementie + positieve effecten Verschraegen, J. (2010). Drempels slechten, deuren openen. Op weg naar de ‘dementievriendelijke gemeente’. Denkbeeld jaargang 22, nummer 4,16-19. Artikel over het idee van een dementievriendelijke gemeente in België vanwege het stijgende aantal mensen met dementie en het gescheiden wonen van degenen die voor hen zorgen Taboes en vooroordelen over dementie moeten verdwijnen, maar hoe? Verschillende voorbeelden, meest opvallend, Gent: samenwerking van mensen met dementie en locale kunstenaars in diverse kunstvormen om samen iets waardevols te creëren De tekst is nogal algemeen, gaat niet erg diep in op de verschillende projecten Vink, M. (2008). Dementie: zorgen voor nu en later. Impressies van het Denkbeeld-congres. Denkbeeld, Volume 20, Nummer 1 (2008), 2-9, DOI: 10.1007/BF03076570 Online te vinden via: http://www.springerlink.com/content/371j480804534634/ Reflectie van Denkbeeld congres en projecten Bijv. over de film ‘Wegwaaiende gedachten’ waar mensen met dementie de hoofdrol spelen Waarde, van, H. (2004). Congres Kunst of vliegwerk. Denkbeeld, 16 (2004), p. 29 Online te vinden via: http://www.springerlink.com/content/p0k8175p5802j567/ Reflectie op het congres ‘Kunst of vliegwerk’ georganiseerd door Alzheimer Nederland en de VPG (29.10.2004) Zie summary p. 53

2.2 Websites (met projecten of artikelen) Art and Dementia; A survey into reports on active participation in the arts of aging people with dementia Kunstfactor, Utrecht – July 2012 | 12

http://www.alzheimer-delft.nl/inf_videocddvd.php?videocddvdid=11 Alzheimerstichting (1998). De kunst van het doen video over een project van Alzheimer Nederland waarin beeldend kunstenaar met dementerende bewoners van een verpleeghuis tekent en schildert Communicatie tussen kunstenaar en mensen met dementie alleen door tekenen en schilderen Workshop ‘De creatieve werkplaats’ (zie volgende) http://www.alzheimer-nederland.nl/ Alzheimer Stichting Nederland organiseert projecten Bijv.: workshop De creatieve werkplaats - een plek voor kunstzinnige activiteiten voor mensen met geheugenklachten en/of dementie en hun mantelzorger http://www.alzheimer-nederland.nl/hulp-en-advies/regionale-afdelingen/afdelingudenveghel/creatieve-werkplaats.aspx http://www.artwell.nl/ Website van Sarah Zoutewelle, auteur van Choclate Rain (zie boven) http://www.essential.nl/liesbeth/tips.htm Creatieve Therapie Muziek: Tips en ideeën muziek met dementerenden Met tips en voorbeelden voor liedjes http://www.gastvrijezorg.nl ‘Kunstbeoefening heeft positief effect op welzijn van ouderen’ (2012) via http://www.gastvrijezorg.nl/nieuws/kunstbeoefening-heeft-positief-effect-op-welzijn-vanouderen-9391 Landelijk Expertisecentrum Sociale Interventie (LESI) heeft onderzoek gedaan naar de positieve effecten van kunstbeoefening op het welzijn van ouderen Uit het onderzoek blijkt dat kunst van ouderen hun erkenning en betekenisvolle sociale contacten oplevert Meer info ook hier: http://www.kunstfactor.nl/engine?app=kunstfactor&service=classmanager:7002&cmd=open&i d=4974&source=agenda_tabel.vm Ook http://www.gastvrijezorg.nl/nieuws/kennisnet-voor-kunst-en-dementie-8688 Kennisnet voor kunst en dementie (2011) ‘Stichting Kunst en Dementie, Vilans en Vitalis WoonZorg Groep willen komend voorjaar [2012] een digitale community over kunst en dementie lanceren op de website van Vilans. [...] Een kennisnet waar organisaties, professionals en kunstenaars elkaar vinden, inspireren en gezamenlijk optrekken en leerplaatsen creëren rondom thema's die te maken hebben met kunst en dementie.’ http://www.kunstendementie.nl/ - Innovatieve praktijkvoorbeelden die het leven van de dementerende mens verrijken Bijv. http://www.kunstendementie.nl/informatie-conferentie-2009 Werkconferentie Kunst en Dementie: De kunst elkaar te bereiken. ‘Kunst biedt onconventionele ingangen en opent nieuwe perspectieven. Het richt zich op zintuiglijke mogelijkheden en geeft ruimte aan de eigenheid van de dementerende. Kunst gemaakt door, met, voor en over de dementerende mens in al zijn diversiteit vormt een brug tussen de dementerende enerzijds en zijn familie, zijn verzorgers en de maatschappij anderzijds’ http://www.kunstindezorg.nl/index.html Samenwerking met Zona’s Kiosk MOON-project een thuis-educatie-project met Annemoon èn kunst in de hoofdrol


Plan om ook voor andere leeftijdsgroepen (bijv. mensen met dementie) soortgelijke trajecten te ontwerpen. http://www.maerzorg.nl/ MAERZORG is actief voor de doelgroep mensen met dementie. Zij betrekken bij hun persoonlijke activiteiten graag de familie en medewerkers zodat er ook overdracht kan plaatsvinden. Net als Zona’s kiosk werken zij vanuit kunst, theater, ontspanning, aroma's etc.. Met een groep van bijna 100 professionals betekent dit ook heel veel activiteiten. www.musicadans.nl Muziekimprovisaties met dementerende ouderen Muziek en dementie http://www.hanze.nl/NR/exeres/8CAC0053-DC98-40FE-BE2EE2882FD9EF93,frameless.htm?NRMODE=Published Hanzehoogeschool Groningnen Muziek en dementie onderzoek van start in 2010 http://www.theaterveder.nl/ ‘Contact maken met en tussen mensen. Ze aanspreken op hun kracht en kwetsbaarheid, meegaan in hun belevingswereld en hun gevoel van welbevinden en zelfvertrouwen bevorderen. Dat is wat Theater Veder wil. Wij maken voorstellingen voor mensen die door ouderdom, een beperking of door hun plaats in de maatschappij moeite hebben met communiceren.’ http://www.vitalisgroep.nl Persbericht van Vitalis WoonZorg Groep : Kunst prikkelt mensen met dementie (2011) http://www.vitalisgroep.nl/index.php?option=com_content&task=view&id=1579&Itemid=201 2 Tijdens landelijk Congres Kunst & Dementie (oktober 2011) maakt de Universiteit van Maastricht voorlopige resultaten bekend uit hun onderzoek wat kunst doet met ouderen met dementie (artikel in wording) Nieuwe werkmethoden met dementerenden in (zorg)instellingen bewijzen dat kunst effect op hen heeft: ze kruipen uit hun schulp, leren zich anders te uiten, kijken terug op gebeurtenissen in hun leven en kunnen daardoor nieuwe krachten aanboren www.youtube.com Bijv. http://www.youtube.com/watch?v=8BSK-7lyF6w Kunst en dementie 2011 successvolle en innovatieve praktijkvoorbeelden van samenwerkingen tussen de zorg en de kunsten http://www.youtube.com/user/DeStichtingKoffer?ob=0&feature=results_main Kanaal van de Stichting Koffer Bijv.: Van Kunst naar Kunde: het Nederlandse pilot project in het kader van de Europese samenwerking ‘Quality of Life’ (creative pathways of family learning), vond plaats in ASVZ Sint Vincentius te Udenhout, met dementerende mensen met een verstandelijke beperking. http://www.zonaskiosk.nl/ Kunstprojecten met ouderen Komen ook bij mensen thuis ‘Wij bedenken bijzondere momenten en nieuwe creatieve concepten voor ouderen en bewoners van zorgcentra, samen met kunstenaars, met als doel het verhogen van de kwaliteit van de mensen in zorgcentra. Ons doel is het cultureel aanbod voor ouderen en anderen in de zorg, met name diegenen die op eigen kracht minder in staat zijn cultuur in huis te halen, te vergroten.’


- Kunstenaars van Zona’s Kiosk werken met luchtobjecten, zintuiglijk theater, non-verbale en aanrakingsbezoeken, muziek, poëzie, smaak en andere middelen om mensen met dementie te bereiken en betrekken, met vaak heel bijzondere resultaten zoals mensen die eindelijk weer lachten of na jaren weer gaan zingen. De persoonsgerichte interactie met mensen en improvisatie vanuit hun eigen aanpak door kunstenaars staat hierbij voorop. http://www.kunstendementie.nl/best-practice-zonas-kiosk Samenvatting van Zona's Kiosk werkmethodiek etc.

2.3 Interactieve Kunstprojecten/ Kunstinstallaties Droge-Wendel, Yvonne, De Coupé, Interactieve installatie (treincoupé waar landschapsbeelden langskomen) Delft, in café ‘De Bieslanderie’ (2008). Zorgcentrum opent De Coupé Mensen met dementie zitten in het kunstproject en beleven zo een reis door de landschappen van Nederland (zijn deel van het kunstobject) Online te vinden via: http://www.zorgvoorbeter.nl/onderwerpen/over/dementie/nieuwsberichten/zorgcentrumopent-kunstwerk-de-coupe/ Nationaal Programma Ouderenzorg (2012). Project ‘Buiten komt voorbij’ laat dementerenden fietsen. Online te vinden via: http://www.zorgvoorbeter.nl/onderwerpen/over/dementie/nieuwsberichten/project-buitenkomt-voorbij-laat-dementerenden-fietsen1/ "Bij zorginstelling Pleyade zijn in het kader van het interactieve kunstproject ‘Buiten komt voorbij’ twee omafietsen opgesteld, met uitzicht op een geprojecteerd landschap uit de buurt. Het Netwerk Utrecht Zorg voor Ouderen is het project gestart om ouderen met dementie meer te laten bewegen. Ook geven de beelden die tijdens de fietstocht aan ze voorbij trekken aanknopingspunten voor weer eens heel andere gesprekken." Kunstinstallatie waar mensen met dementie wel actief fietsen Interactief Open 3 | Suchan Kinoshita: Instrumentarium http://www.skor.nl/nl/site/item/open-3-suchan-kinoshita-instrumentarium Interactieve installatie Project van ZonMW 2002 (jaarlijks) in samenwerking met SKOR Een initiatief van Zorg Onderzoek Nederland, dat zich inzet voor innovatie in de gezondheidszorg. De voorstellen van Peter de Cupere, Airplant & De Geuzen en Suchan Kinoshita (kunstenaar) hebben betrekking op de leefomgeving van dementerende ouderen, en zijn hier opgenomen http://classic.skor.nl/set-1037-nl.html Open 3- Kunst in psychogeriatrische verpleeghuizen (Hoofdpagina) http://classic.skor.nl/artefact-1101-nl.html Hoe kunst en architectuur de wereld van mensen met dementie verrijken Royers, T. (2011). Kom mee naar buiten, allemaal…Interactieve fietstochten voor mensen met dementie. Denkbeeld jaargang 24, nummer 2, p. 23. Over kunstinstallatie voor mensen met dementie Online te vinden via: http://www2.bsl.nl/denkbeeld/ http://www.zorgvoorbeter.nl/onderwerpen/over/dementie/nieuwsberichten/ Bijv.: Nursing (2012). Lichttafel moet patiënt met dementie activeren


Online te vinden via: http://www.innovatiekringdementie.nl/Nieuws/Lichttafel-moet-activeren-bij-dementie.aspx ensen komen aan een lichttafel zitten Kleur verandert Objecten op tafel en de sfeerverlichting in de rand van de tafel veranderen wanneer er interactie plaatsvindt tussen de bewoners en de objecten


3.

Art and dementia – Other Countries

3.1

Articles / Books (with author)

Baines, P. (2007). Quality Dementia Care 3. Nurturing the Heart: creativity, art therapy and dementia Can be found via http://www.fightdementia.org.au/research-publications/quality-dementiacare-papers.aspx (Quality dementia care 3) Baines is an art therapist herself and recounts stories of her own experience in working with people who have dementia Strongly recommends the use of art for people with dementia Explains very well what art therapy (for people who have dementia) means Mentions interesting names/ contacts and summarizes many interesting studies/projects on art therapy and dementia Argues that dementia can also allow people to experience a whole new level of creativity Basting, A. D. (2001). ‘God Is a Talking Horse’: Dementia and the Performance of Self. TDR (1988-), Vol. 45, No. 3 (Autumn, 2001), pp. 78-94 A bit more on storytelling with people suffering from dementia Subsequently put about 100 stories into a professional play production, a website, and an art installation in order to deepen public awareness of the creative potential and humanity of people with dementia See summary on pp. 37 – 39 http://www.jstor.org/stable/1146913 Basting, A.D. (2006). Arts in Dementia Care: 'This is not the end... it's the end of this Chapter’. Generations 30(1) / Spring 2006 Discusses arts used as tools in the care of older adults with dementia Describes what the arts contribute to the process Contrasts ‘medical’ and ‘social’ arts programs, measures, indicators of effectiveness, as well as limits Provides examples of the power of creative expression in the lives of people with dementia and their families Basting, A. D. (2009). Forget Memory. Creating Better Lives for People with Dementia. The Johns Hopkins University Press: Baltimore. What is dementia and what are our fears towards it? How can we get passed them? Use and relevance/importance of Art practices in dementia care Why are the arts such a good way to approach dementia Interesting initiatives with people who have dementia (e.g.): Timeslips: creative storytelling, see http://www.timeslips.org/ Meet me at MoMA: making art accessible to people with dementia; visual arts, also artmaking workshops; see http://www.moma.org/meetme/ StoryCorps- Memory Loss Initiative (MLI), interviews are recorded to keep and listen to, see http://storycorps.org/initiatives/mli/ Beard, R.L. (2011). Art Therapies and Dementia Care: A Systematic Review. Dementia, first published on September 20, 2011. DOI: 10.1177/1471301211421090 Review of existing literature on the subject Structure: goes along with different therapies (i.e. art, music, visual arts, drama, dance/movement) and provides brief reflections on the current literature on each subject


Provides an extensive bibliography at the end (many interesting titles Beshwate T. A. and Kasin, K. (2010). Art as Therapy: Nurturing Well-Being and Relationships for People with Dementia. The Journal on Active Aging, September/October 2010, pp. 36 – 42 Article can be retrieved online via: http://www.icaa.cc/1-Organizationalmember/member-articles/art-as-therapy.pdf Find summary on pp. 40 – 41 Brotons, M. et al.(1997) Music and Dementias: A Review of Literature; Journal of Music Therapy, XXXIV (4),1997, p.233 literature survey on the use of music in different dementias Douglas, James, Ballard: Non-Pharmacological Interventions in Dementia. Retrieved May 2012 via http://apt.rcpsych.org/content/10/3/171.full Clive Ballard, Professor of Age Related Disorders at Kings’ College London/Institute of Psychiatry. E-mail: [email protected] Reports on the non-pharmaceutical interventions in dementia care such as reminiscence therapy, art therapy, music therapy Though it does refer to therapies it is still interesting to see how art is used Not a description of concrete projects but an overview of therapies for dementia (incl. music, reminiscence, art) Interesting literature mentioned Ganß, M., Linde, M. (2004). Kunsttherapie mit demenzkranken Menschen. Dokumentation des Symposiums ‘KunstTherapie in der Altenarbeit – künstlerische Arbeit mit Demenzerkrankten’. Frankfurt a.M., Mabuse, 2004 On art therapy and artistic work with people with dementia Gerdner, L. A. (2005). Music, Art, and Recreational Therapies in the Treatment of Behavioral and Psychological Symptoms of Dementia. International Psychogeriatrics / Volume 12 / Issue S1, pp 359 - 366 DOI: http://dx.doi.org/10.1017/S1041610200007286 Treatment-oriented art therapies Designed to treat behavioural symptoms Hannemann B.T. (2006). Creativity with Dementia Patients. Can Creativity and Art Stimulate Dementia Patients Positively? Gerontology. 2006;52(1):59-65 Creative and art therapy provides possibilities to sharpen the capacity of the senses and the patients' propensity to act themselves A combination of creativity and arts may help to define the feelings of elderly with dementia for aesthetical matters Creative activity reduces depression and isolation, offering the power of choice and decisions Art and creativity offer a path of opening up the windows to people's emotional interiors Hayes, G. & Povey, S. (2011). The Creative Arts in Dementia Care: Practical Personcentred Approaches and Ideas Why is art (therapy) such a good way to approach dementia (patients) Creativity comes from the heart not from the brain Hong, S., Min Joo Choi, M.J. (2011). Songwriting-oriented activities improve the cognitive functions of the aged with dementia. The Arts in Psychotherapy 38 (2011) 221– 228


Music therapy, i.e. songwriting activities, with people with dementia and their positive effects on cognitive functions Project set up in three stages: stage 1- preparing songwriting for finding preferred songs, stage 2- doing songwriting and stage 3- reinforcing songwriting Houser, E. (2011). Creative Engagement Through the Arts as Health Care for Older People: Potential and Problems Provoked. Master thesis, 238 pages, can be retrieved via: https://tspace.library.utoronto.ca/bitstream/1807/30091/6/Houser_Ezra_201111_MA_thesis. pdf Analyses use and value of creative arts for older people in general Also addresses dementia, for example with a case study of the StoryCorps (See Bastings above) Addresses problems that are still prominent in the field (such as insufficient research, many projects are only case studies without control groups, etc) Innes & Hatfield (2002). Healing Arts Therapies and Person-Centred Dementia Care Offering practical advice for arts therapists and health care professionals, this book emphasizes the importance of putting the individual before the illness to provide holistic, person-centred support for people with dementia. http://www.jkp.com/catalogue/book/9781843100386 Innes, A., Archibald, C., Murphy, C. (2004). Dementia and Social Inclusion: Marginalised Groups and Marginalised Areas of Dementia Research, Care and Practice In general often mentions the importance of the arts in connection with the topic Particularly interesting for this report is for example the chapter on Reaching out with the arts: meeting with the person with dementia Jaaniste, J. (2011). Dramatherapy and Spirituality in Dementia Care. Dramatherapy, 33(1), 16-27 DOI: http://dx.doi.org/10.1080/02630672.2011.558355 Arts therapies may assist people with dementia to cope with the grief and loss their ageing may entail, as they lose friends and physical and mental capacity, in a society where elderly people are marginalised Dramatherapy has person-centred approach By means of story, metaphor, play and improvisation, cultural questions and answers can assist with celebration, reminiscence, pleasure and grieving, and ultimately the transition to a dignified and spiritually meaningful death Kahn-Denis, K.B. (1997). Art Therapy with Geriatric Dementia Clients. Art therapy: Journal of American art therapy association vol. 14, 3 Evocative nature of art allows older adults with dementia to become expressive and bypass some of their cognitive deficits How art therapy can be used for people with dementia Kelleher, A.Y. (2008). The Beat of a Different Drummer. Music Therapy's Role in Dementia Respite Care. Activities, Adaptation & Aging, Volume 25, Issue 2, January 2001, pages 75-84. DOI: 10.1300/J016v25n02_05 On the creative use of music for people with dementia, whether by therapist or not Killick, J. & Allan, K. (1999). The Arts in Dementia Care: Tapping a Rich Resource.


Journal of Dementia Care, 7, 35–38 Both Killick and Allan are pioneers in the field of art and dementia care Review research into use of the arts in dementia care. Here they focus on the art form where most work has been done with people with dementia to date – music Killick, J. & Allan, K. (1999). The Arts in Dementia Care: Touching the Human Spirit. Journal of Dementia Care, Volume 7, Issue 5, Pages 33-37 (Sept/Oct 1999) Benefits of the visual and verbal arts, from painting and writing to dance, in dementia care Killick, J. (2000). The role of the arts in dementia care. Nursing and Residential care, Vol. 2, 12 Arts programmes, whether they involve painting, sculpture, music or any other art form, allow these people to express themselves perhaps more clearly than they could verbally. John Killick discusses the implementation and effects of a number of pilot art projects for people with dementia. See here for other publications of John Killick: http://www.dementiapositive.co.uk/uploads/7/7/9/6/7796394/jk_publications_march_12.pdf Kinney, J.M., Rentz, C.A. (2005). Observed Well-being Among Individuals with Dementia: Memories in the Making©, an art program, versus other structured activity. American Journal of Alzheimer's Disease and Other Dementias, July/August 2005; 20(4):220-7 DOI: 10.1177/153331750502000406 Drawing and painting presented as means of communication for people with dementia Making art assists quality of life and personal well-being now, even if there is no cure and even if effects are only momentary Facilitator is artist with knowledge about dementia Kreativität beim älteren Menschen : 10. Jahrestagung der Internationalen Gesellschaft für Kunst, Gestaltung und Therapie / Gesellschaft für Kunst, Gestaltung und Therapie; Berlingen: 1995 . - 300 S. HKT Nürtingen: KTP-AL-Ges-1995 Kunst und Demenz - Kunst trotz Demenz - Kunst durch Demenz? (2010) In: Psychiatrische Praxis, ISSN 0303-4259 Numbering: vol. 37 (2010), issue 5 (05 07), page 256-257 (1) Subject journal: medicine Lokon, Elizabeth J. (2008). Opening Minds Through Art (Oma): An Art Program for People with Dementia. Thesis submitted to aquire Master of Gerontological Studies Find thesis online via http://etd.ohiolink.edu/sendpdf.cgi/Lokon%20Elizabeth%20J.pdf?miami1229536912 [email protected] Programme led by artist facilitators Programme has four major goals: (1) to promote the social engagement, autonomy and dignity of people with dementia by providing creative self-expression opportunities; (2) to show the public the creative self-expression capacities of people with dementia through exhibitions of their artwork; (3) to provide staff and volunteers with opportunities to build intimate relationships with people who have dementia; and (4) to provide volunteers with community service opportunities Menzen, K.H.( 2004). Kunsttherapie mit altersverwirrten Menschen. München: Reinhart. Minimize decrease in mental capacities of people with dementia by applying art therapy


Art therapy is very useful in that it appeals to all the senses of human beings Mottram, P. (2003). Art Therapy with Clients Who have Dementia. Dementia, June 2003; vol. 2, 2: pp. 272-277. DOI: 10.1177/1471301203002002010 For summary see pp. 44 – 45 Peisah, C., Lawrence, G., and Reutens, S. (2011). Creative Solutions for Severe Dementia with BPSD: a Case of Art Therapy Used in an Inpatient and Residential Care Setting . International Psychogeriatrics / FirstView Articles DOI: http://dx.doi.org/10.1017/S1041610211000457 For summary see pp. 46 – 47 Reyner, A., Pelkauskas, L.,Martin, L., O’Mansky, A. (2006). Successful Crafts & Game Ideas for Alzheimer’s Activities. S&S Worldwide Find document online: http://www.ssww.com/docs/resources/2006_S-51.pdf Everything you need to know about dementia and starting successful arts and crafts programs with those living with dementia Practical tips Rusted, J., Sheppard, L., Waller, D. (2006). A Multi-centre Randomized Control Group Trial on the Use of Art Therapy for Older People with Dementia. Group Analysis, December 2006; vol. 39, 4: pp. 517-536. URL: http://dx.doi.org/10.1177/0533316406071447 Find abstract here: http://gaq.sagepub.com/content/39/4/517.short Find summary on pp. 48 – 52 Safar, L. T. & Press, D. Z. Art and the Brain: Effects of Dementia on Art Production in Art Therapy. Art Therapy, Volume 28, Issue 3, September 2011, pages 96-103 DOI: 10.1080/07421656.2011.599734 Discusses how art is affected by dementia Seifert, L.S., Baker, M.K. (1999). Procedural Skills and Art Production Among Individuals with Alzheimer's-Type Dementia. Clinical Gerontologist, Volume 20, Issue 1, 1999, pages 3-14 Link to the article: http://dx.doi.org/10.1300/J018v20n01_02 3-month project with individuals with and without dementia Most successful art activities utilized stickers, all participants seemed able to acquire basic skills associated with making pictures with stickers Seifert, L.S., Drennan, B.M. & Baker, M.K. (2001). Compositional Elements in the Art of Individuals with Alzheimer’s-Type Dementia. Activities, Adaptation & Aging, 25:3-4, 95-106 Link to this article: http://dx.doi.org/10.1300/J016v25n03_07 Residents (non-artists with and without Alzheimer’s-type dementia) at a long-term care facility in Ohio were pen-pals to students at a secondary school in Chicago, in part, as motivation for art production Pictures made by elderly participants were analyzed for compositional complexity and balance (symmetry vs. asymmetry) Semi, T. & Ahvo, L.; Kossolapow, L. (1999). Creative arts therapy for demented persons as a base for an therapeutic community - 1. Aufl. Münster : LIT , 1999 . - 2 S. in: Ecarte: Arts Therapies 2000 : Abstract Book of the 5th European Arts Therapies Conference . S.: 30


Can be retrieved via http://books.google.de/books?id=hPbWDGYV_UC&pg=PA30&lpg=PA30&dq=Semi,+Kossolapow,+Creative+arts+therapy+for+de mented+persons&source=bl&ots=d23CQ4pWjC&sig=IXMc0s0WJm_MwP2Wi3wmfV4S_fc&hl =de&sa=X&ei=ekHWT9e-NYPQtAbunPjyDw&ved=0CEoQ6AEwAA#v=onepage&q&f=false Basis for therapeutic community: responsibility, empathy, experiencing, closeness, behaving honestly as yourself, seeing the positive, giving time, caring, seizing the moment Demanding way of work when both clients and staff are using personal resources openly and creatively Tried to obscure bounds between nursing and art Stewart, E.G. (2004). Art Therapy and Neuroscience Blend: Working with Patients Who Have Dementia. In Art Therapy: Journal of the American Art Therapy Association Volume 21, Issue 3, 2004 http://www.tandfonline.com/doi/abs/10.1080/07421656.2004.10129499 DOI: 10.1080/07421656.2004.10129499 Findings from the fields of neuropsychology and art therapy as they relate to treating patients with dementia Four case examples Svansdottir, H.B. & Snaedal, J. (2006).Music Therapy in Moderate and Severe Dementia of Alzheimer’s Type: a Case–Control Study. International Psychogeriatrics (2006), 18:4, 613–621 Doi:10.1017/S1041610206003206 Music therapy for people who have dementia using control group Positive effects Ullán, A.M., Belver, M.H., Badía, M., Moreno, C., Garrido, E., Gómez-Isla, J., Gonzalez-Ingelmo, E., Delgado, J., Serrano, I., Herrero, C., Manzanera, P., Tejedor, L. (2012). Contributions of an Artistic Educational Program for Older People with Early Dementia: An Exploratory Qualitative Study. Dementia, first published on January 13, 2012 DOI: 10.1177/1471301211430650 Contemporary artistic educational programme for people with dementia, based on photographic cyanotype techniques Tried to find out whether or not people with dementia could participate and how they reacted to the programme Waller, D. E.. (2001) Art Therapy and Dementia: An Update on Work in Progress. International Journal of Art Therapy, 6(2), pp. 67-68 http://dx.doi.org/10.1080/17454830108414033 Research report on project pilot study concerning art therapy and dementia and follow-ups Waller, D. (2002). Arts Therapies and Progressive Illness: Nameless Dread. New York: Brunner-Routledge E.g. article on: Arts therapies, progressive illness, dementia: the difficulty of being. Pp. 1 – 13. And other articles Waller is an art psychotherapist and tries to illustrate the different fields in which art therapy can contribute to the well-being of people, e.g. dementia Woolhiser Stallings, J. (2010). Collage as a Therapeutic Modality for Reminiscence in Patients With Dementia. Art Therapy, Volume 27, Issue 3, January 2010, pages 136-140 DOI: 10.1080/07421656.2010.10129667


Traditional therapy, with emphasis on verbal communication may not be appropriate for patients with dementia due to impaired cognitive and verbal abilities Qualitative study on the use of collage in art therapy to aid in the process of reminiscence in individuals with dementia Zoutewelle, S. (2011). Chocolate Rain: 100 Ideas for a Creative Approach to Activities in Dementia Care. Hawker Publications Ltd ‘A book for those hungry for creative activity ideas for people living with dementia and particularly those with advanced dementia! It is practical, inspiring and has a good mix of simple everyday things to do as well as more structured arts-based activities.’ Sylvie Silver and Sally Knocker, National Association of Providers of Activities for Older People. Meant for residential care, day care, and at home; all who seek creative solutions to improve the well-being of people living with dementia. Each of these ideas has been successfully applied across a full range of dementia care situations See also http://www.careinfo.org/journal-of-dementia-care/articles.php for other featured articles of Sarah Zoutewelle-Morris and her website (beneath) Zukunftsforum Demenz (reappearing in search process) Professor Dr. med. Ingo Füsgen (Ed.) (2004). Musik und Kunsttherapie bei Demenz http://www.zukunftsforum-demenz.de/pdf/Doku_12_innen.pdf Also on use of music and art therapy with people with dementia

3.2 Websites http://www.ageandcommunity.org/ Working place of Anne Davis Basting (see above) Three main goals: 1. lead the field of long-term care by offering cutting edge educational programmes and products 2. create national models of person-centred dementia care through targeted applied research projects and consulting 3. raise awareness of their offerings and events through effective communication http://www.agedcareinsite.com.au/pages/section/article.php?s=Dementia&idArticle=22221 Staff see success in arts projects in dementia care 2011 Benefits of visual and performance arts for people living with dementia, their families and the broader community (e.g. storytelling, theatre and film to photography, sound and art,...) http://alznews.blogspot.com/2007/09/dementia-care-practices-and-art-therapy.html Dementia care practices and art therapy (2007) ( again link to Baines 2007) http://artcalling.wordpress.com/2007/06/10/art-and-dementia-ii/ Art and dementia care II (2007) Art Calling living a creative life, and exploring alternative paths for artists http://www.arts.ufl.edu/CAHRE/ Uni of Florida's art healthcare degree programmes Also doing research http://www.arts4dementia.org.uk/2012-project-volunteer Different programmes of arts for dementia, e.g. volunteers programme for arts in dementia care in 2012 http://www.bangor.ac.uk/imscar/dsdc/creativearts.php.en


Creative Arts Projects also with people with dementia (carried out by Prifysgol Bangor University) Many other interesting themes, see here: http://www.bangor.ac.uk/imscar/dsdc/links.php.en http://www.cecd-society.org/index.html http://en.wikipedia.org/wiki/The_Society_for_the_Arts_in_Dementia_Care NGO that is dedicated to knowledge dissemination and education that focuses on improving the quality of lives of seniors living with dementia by using the visual and performing arts. http://www.cecd-society.org/about_us.html Motto: Art speaks when words fade http://www.cecd-society.org/affiliates-australia.html http://www.cecd-society.org/assets-australia/CECD-AUS-Symposium-2011-Flyer.pdf http://dancing-away-memory-blues.blogspot.de/2008/04/references-in-alphabeticalorder.html Dancing Away Memory Blues. Enriching the lives of persons with memory challenges. By ‘dancing away’ they include all sorts of activities that enrich the lives of persons with ‘memory challenges’ Alphabetically ordered list of literature (very interesting!) www.dementiapositive.co.uk John Killick & Kate Allan both pioneers in the field of creativity in dementia care ( projects) http://www.deutsche-alzheimer.de Vom Defizit- zum Kreativitätsmodell. Kreatives Malen mit Demenz-Patienten (2005). Art therapy for people with dementia reaches them on a deeply emotional level http://www.deutsche-alzheimer.de/index.php?id=210 www.fightdementia.org Interesting publications on the topic of dementia as well as dementia and art (such as Baines (2007), see above) http://forgetmemory.org/ Anne Davis Basting's blog. It is possible to contact her http://www.francealzheimer.org/pdf/documentations/colloque_arttherapie.pdf Report on use of art therapy for people with Alzheimer’s http://www.moma.org/learn/disabilities/dementia Arts programmes for ‘art enthusiasts’; for different disabilities, also dementia http://www.parentgiving.com/elder-care/art-as-mechanism-of-expression-when-verbal-skillsfail/ Article on how people living with dementia can use art as a means to express feelings etc in images when their verbal skills fail due to the disease Parentgiving is reappearing in search process http://www.rhul.ac.uk/aboutus/newsandevents/news/newsarticles/forgottendementiasufferers helpedthroughart.aspx Hearts and minds: creative arts and reminiscence program for people with dementia article: Forgotten dementia sufferers helped through art


http://www.shands.org/aim/ Organisation for programmes of arts in hospitals http://www.thesah.org/template/page.cfm?page_id=1 Society for art and healthcare Coordinates grants, documents, activities Register of art healthcare practitioners http://en.wikipedia.org/wiki/Art_and_dementia Wiki article on art in dementia care Find summary p. 54 http://www.wisdem.org/en Explores new approaches to dementia and advocates non-pharmacological interventions YouTube http://www.youtube.com/watch?v=Q5LAvzN-VXo Video on Alzheimer's and Art therapy ‘Art does not rely on memory’… Channel: http://www.youtube.com/user/AlzheimersWeekly http://www.youtube.com/watch?v=L-oxuWJXHAQ&feature=related Alzheimer's, Art, and the TTAP Method® (TTAP= Therapeutic thematic arts programming) http://www.youtube.com/watch?v=UTXXidJ8wug&feature=related Art and Alzheimer's with Angel Duncan (art therapist) Alzheimer's association, Memories in the making Lots of results on this via google and google scholar http://www.google.de/search?q=memories+in+the+making&ie=utf-8&oe=utf8&aq=t&rls=org.mozilla:de:official&client=firefox-a E.g. http://aja.sagepub.com/content/20/4/220.short


4.

Some interesting further reading that did not qualify for the main report

Adams, T. (2008). Developing an inclusive approach to dementia care. Practice, Volume 15, Issue 1, January 2003, pages 45-56 Available online: 1 May 2008 Link to this article: http://dx.doi.org/10.1080/09503150308416910 Article about how an inclusive approach can be applied in dementia care so both people with dementia and caregivers are included in the decision-making process Does not explicitly refer to art in abstract but art as means of expression could of course add to this Bos, J. (n.d.). Kunstparticipatie: welzijn, empowerment of sociaal netwerk? http://www.lasso.be/sites/default/files/kunstparticipatie_welzijn_empowerment_of_sociaal _netwerk.pdf Onderzoeker Universiteit Utrecht, werkt samen met Kunstfactor aan het project ouderen en kunstbeoefening Verslag van een lezing over dit project en theoretisch kader Noemt ook kort dat kunst als therapie gebruikt kan worden om mensen met dementie een zekere mate van eigenwaarde te laten behouden Via http://www.lasso.be/nl Brussels netwerk kunsteducatie en publieksbemiddeling Daykin, N., Byrne, E., Soteriou, T., O'Connor, S. (2008). Review: The impact of art, design and environment in mental healthcare: a systematic review of the literature. The Journal of the Royal Society for the Promotion of Health, March 2008; vol. 128, 2: pp. 85-94. Literature survey on environmental influences on people with dementia Doyle, C. (PhD). Evaluation of innovative dementia programmes: a short review. Mentions that artworks are decreased disturbing stimuli http://www.buseco.monash.edu.au/centres/che/pubs/wp21.pdf Geer, van der, E.R., Vink, A.C., Schols, J.M.G.A. and Slaets, J.P.J. (2008). Music in the Nursing Home: Hitting the Right Note! The Provision of Music to Dementia Patients with Verbal and Vocal Agitation in Dutch Nursing Homes. International Psychogeriatrics / Volume 21 / Issue 01, pp 86 - 93 DOI: http://dx.doi.org/10.1017/S104161020800793X Research on what kinds of music are played in Dutch nursing homes and how they relate to preference of residents Griffin, R. L. (2012). Changing the Culture for Dementia Care: The Path to a Better Quality of Life for People with Alzheimer’s Disease Randy Griffin is an American dementia care and consultancy expert Directly addresses innovative approaches to nursing care Argues (like Basting) that although there is no cure, there is treatment Halpern et al. (2007). ‘I Know What I Like’: Stability of Aesthetic Preference in Alzheimer’s Patients. Brain and Cognition 66 (1) 65–72. Two studies explored the stability of art preference in patients with Alzheimer’s disease and age-matched control participants. Preferences for three different styles of paintings, displayed on art postcards, were examined over two sessions. Preference for specific paintings differed among individuals but AD and non-AD groups maintained about the same stability in terms of preference judgments over two weeks, even though the AD patients did not have any explicit memory of the paintings. The researchers conclude that aesthetic responses can be preserved in


the face of cognitive decline. This should encourage caregivers and family to engage in arts appreciation activities with patients, and reinforces the validity of a preference response as a dependent measure in testing paradigms. Hobson, P. (2008). Understanding dementia: developing person-centred communication. British journal of Healthcare assistants, Vol. 2, Issue 4. Hortulanus, Prof. Dr. R. en Dr. M. Jonkers, Diana Stuyvers (2012). Kunstbeoefening met ambitie; Naar een lokaal stimulerings- en faciliteringsprogramma voor kunstbeoefening door ouderen. Landelijk Expertisecentrum Sociale Interventie (LESI), Utrecht. Onderzoek naar de voorwaarden en mogelijkheden van stimulering en facilitering van kunstbeoefening door ouderen. Niet specifiek gericht op ouderen met dementie, maar deze worden niet uitgesloten. Te vinden via www.kunstfactor.nl, via Zoeken >> publicaties. http://www.kunstfactor.nl/engine?app=kunstfactor&service=classmanager:6783&cmd=open&i d=7687&source=zoeken.vm%3Fusecache=true James, O. (2008). Art - the Key to Unlocking Dementia. In The guardian Retrieved online via: http://www.guardian.co.uk/lifeandstyle/2008/dec/20/dementiaresearch-art-therapy Article reports on a study by Halpern et al. that analyses the stability of aesthetic preference in people Kennedy, R. (2005). ‘The Pablo Picasso Alzheimer's Therapy’ http://www.nytimes.com/2005/10/30/arts/design/30kenn.html?pagewanted=all Reports on the effects of visual arts on people with dementia Museum visits for people with dementia Kitwood, T. (1990).The Dialectics of Dementia: With Particular Reference to Alzheimer’s Disease. Ageing and Society 10:177-196 Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Open University Press. Kontos, P. (2003). ‘The Painterly Hand’: Embodied Consciousness and Alzheimer’s Disease. Journal of Aging Studies, 17: 151-170 Adds concept of embodiment to discussion More on art of e.g. De Kooning who suffered from dementia which can be seen in his work Very theoretical A lot of concepts are mentioned Kontos, P. (2006). ‘Embodied Selfhood. Ethnographic Exploration of Alzheimer’s Disease.’ In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, eds. Annette Leibing and Lawrence Cohen, 195–217. New Brunswick: Rutgers University Press (OR: 2008 Embodied Selfhood: An Ethnographic Exploration of Alzheimer’s Disease. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility. A. Leibing and L. Cohen, eds. Pp. 195-217. New Brunswick, NJ, and London: Rutgers University Press.) Kydd, A. (2009). Book reviews and educational resources: The Art of Dementia Care, by Daniel Kuhn and Jane Verity. Clifton Park, NY: Thomson Delmar Learning, 2008, pp. 123 (including a 10-page introduction). ISBN 10: 1—4018—9951-X; ISBN 13: 978—1-4018—9951—6, Dementia, May 2009; vol. 8, 2: pp. 325-326. Kydd in Beard!!!!


Maurer, Konrad & Maurer, Ulrike (2001), Alzheimer und Kunst : ‘Wie aus Wolken Spiegeleier werden’ / Nürnberg : Novartis , 2001 . - 109 S. On effects of dementia on art, example graphic and designer Carolus Horn Maierhofer, R.. (2010). ‘Generations Connecting: Alzheimer’s Disease and Changes of Cultural Values.’ Special issue EngAGEing Questions: Gender and Age, Gender Forum: An Internet Journal for Gender Studies, no. 28. Retrieved Mai, 13, 2012 via http://www.genderforum.org/issues/engageing-questions/generations-connecting-alzheimersdisease-and-changes-of-cultural-values/. Extensive work on two texts portraying women with Alzheimer's disease and their relationship with their care-giving daughters ‘In Judith Dothard Simmons’ journal article, ‘Connections. I Am My Mother’s Keeper,’ the narrator asserts her responsibility for her aging mother and thus re-defines values of American society by establishing the importance of family bonding and the necessity of defining oneself in relation to others. In the film Complaints of a Dutiful Daughter, Deborah Hoffmann chronicles the various stages of her mother’s Alzheimer's disease and the changes in the daughter’s response to her mother and to herself’ Mihailidis, A., Blunsden, S., Boger, J., Richards, B., Zutis, K., Young, L., Hoey, J. (2010). Towards the development of a technology for art therapy and dementia: Definition of needs and design constraints. Original Research Article, The Arts in Psychotherapy, Volume 37, Issue 4, September 2010, Pages 293-300 http://www.sciencedirect.com/science/article/pii/S0197455610000663 Mitchell, G.J., Dupius, S., Jonas-Simpson, C., Whyte, C., Carson, J., Gillis, J. (2011). The Experience of Engaging With Research-Based Drama: Evaluation and Explication of Synergy and Transformation. Qualitative Inquiry, April 2011; vol. 17, 4: pp. 379-392. Radebold, H.: Behandlungskonzepte der Psychoanalyse. In:Radebold, H./Hirsch, R.D.(Hg.): Altern und Psychotherapie. Bern, Huber, 1994, 43 – 54 Sabat, S. & Harré, R. (1992). The construction and deconstruction of self in Alzheimer's disease. Ageing and society 12: 443-61 Notion of self Relevant in making a connection with art (therapy) and why art (therapy); What does it offer? Veilbrief, A. In: Kunst Kraak (2011), jrg. 3, nr. 16, oktober, p. 20-22 Utrecht : Kunstfactor, 2011 http://www.kunstfactor.nl/kunstfactor/pagina.vm?id=5274 ‘Kunstenaars kunnen veel betekenen in de ouderen- en dementenzorg’, zegt Noud Verhave namens de stichting Kunst en Dementie. De effecten van kunstparticipatie zijn voor demente mensen uiteraard van voorbijgaande aard. Maar dat is voor Verhave geen reden om er geen energie in te steken. http://www.alzheimer.nl/nieuws.html?zoom=179 TV-programma Kruispunt over dementie en kunst Over kunstenaars die inspiratie vinden door hun demente ouder Te vinden via http://www.gastvrijezorg.nl/evenementen/symposium-over-dementie-5445


5.

Summaries

On the following pages I will present eight summaries of texts listed in the report. The order of the summaries is alphabetical, as follows: 1. Basting (2001) I have included a summary of Basting here because she is one of the leading figures in the field of creative work with people with dementia. Also her way of approaching the topic is inspiring and has had a major influence on the reflection at the end of this report. 2. Beshwate & Kasin (2010) This text illustrates well how artists can unleash the creative potential in people living with dementia and the blurry boundaries between plain creative activity and art therapy. It also illustrates the importance of the moment for people with dementia. 3. Montgomery – Smith (2006) This article is about singing with people with dementia and also reports on its overwhelming effects on the brain. 4. Mottram (2003) Mottram also gives a very good account of the difficulties one can encounter when approaching people with dementia with art practices, and on how these can be handled or resolved. 5. Peisah, Lawrence & Reutens (2011) This article reports on a tailor-made study for one person, Mrs. D. Its results encourage personcentred care for people with dementia. 6. Rusted, Sheppard, Waller (2006) This is perhaps the most scientific of all the texts reviewed. It gives precise scientific information on the positive, therapeutic potential of art practices. 7. Waarde, Van (2004) Van Waarde reports on his positive experience of the congress on ‘Kunst en vliegwerk’, organized by Alzheimer Nederland, and the workshops that were offered. 8. Wikipedia article: Art and dementia I thought it was interesting to include this Wikipedia article as it shows that the topic is on its way to reaching ‘global’ attention seeing that it is now featured in the famous online encyclopaedia. The summaries have been developed according to the following scheme for ease of comparison: (Note: Not all texts contain the features mentioned below! Short texts are simply summarised) - Precise bibliographical information on the text + source + key indications - Information on the author(s) - General information on the text 1. Where did the project take place? 2. Who executed the project? / Who conducted the research? (specific background, i.e. artists, creative therapists, caregivers, etc.) 3. Inspiration 4. Points of departure - The project


1. 2. 3. 4.

Kind of art intervention (imaging, crafting, dance, music etc.) Aim Structure, time span etc. Participants (number of participants; only people living with dementia or also others; residents of certain care institutions or not) 5. Description of activities 6. Extent of assistance etc. - Outcomes 1. Which method was used to evaluate the outcomes? 2. What does the project demonstrate? How did participants react (short- and long-term)? 3. What difficulties did they encounter? - Additional information from the text 1. Tips 2. Additional literature 3. Names and contact information Key list to the summarized literature Kind of article- Author SR = Scientific researcher (i.e. scientific article on research/ research projects done by the writer or colleague in the field…) A = Artist (i.e. project description done by artist who guides intervention) CT = Art therapist/ Creative therapist CG = Care giver (i.e. project description done by member of care-giving institution) O = Others Art discipline used in intervention Art Discipline / Art group I = Imaging (Collage, painting, sculpturing, crafting, photography, ceramics, etc.) P = Performance (i.e. dance, acting, …) NP = narratives and writing

5.1

Soort artikel - auteur W= Wetenschappelijk onderzoeker

K= Kunstenaar (project omschrijving door uitvoerende kunstenaar) CT = Kunst/ Creatief therapeut ZB= Zorg betrokkene; medewerker uit de zorg O= Overige

Kunstdisciplines B = Beeldend (collage, schilderen, sculpturen, handwerk, fotografie, keramiek, etc.) P= Podiumkunst (dans, theater, muziek, zingen, enz.) SV = Schrijven en vertellen

Basting, God is a talking horse

Basting, A. D. (2001). God is a talking horse: Dementia and the performance of self. TDR (1988), Vol. 45, No. 3 (Autumn, 2001), pp. 78-94 SR, O; NP, P The author Anne Davis Basting is the director of the Centre on Age and Community at the University of Wisconsin, Milwaukee, where she is also an associate professor in the Department of Theatre and Dance at the Peck School of the Arts. General information


- Time slips is a storytelling project initiated in 1998 in both Milwaukee, Wisconsin, and New York City - Bastings was project director; care-giving staff, families, and students held sessions - Wanted to encourage creative expression among people with Alzheimer's disease capturing the complexity of their worlds and our relationship to them The project - Deepen public awareness of the creative potential and humanity of people with dementia - Emphasise on relational quality of the self - Enhance social identity of people with ADRD by assigning them a meaningful role in institutional setting - Creating valued social role (i.e. a storyteller) and engaging with participants as functional people - 18 weeks of storytelling workshops in Milwaukee and 9 weeks in New York City at 4 adult day centres (2 each) - Storytelling sessions held one hour once a week following a unifying 5 phase ritual (the greeting, the retelling of the story from last week, this week's story, the final retelling and the farewell) - Artists collaborated with storytellers and translated stories into public art events Participants - People with Alzheimer's disease and related dementia (ADRD) participated - Participants were either living at home or in a care institution. All required some form of 24hour care, nearly all had symptoms consistent with middle-stage Alzheimer's disease Description of activities & mode of assistance - Documentation of stories developed by groups, finally put together in a book - Subsequent transformation of about 100 stories and other material collected into website, art installation and professional play production - Focus on who people are now (with all peculiarities, symptoms etc.) not who they were - Facilitators wore name tags and introduced themselves each week so participants would not struggle to remember names - Story from previous week told at beginning of the session to remind people that stories are creative and there is no right or wrong answer - Challenge answers were also accepted to assure participants that every answer is possible (e.g. ‘What should we call her? Everything is possible.’ ‘Ah? Then ABCDEFG’) - Storytelling started with handing out copies of the image among participants - Student took notes in the middle of the circle; others asked encouraging questions Outcomes - During storytelling answers lead away from the logic of the outside world into a realm between imagination and memory (the staff's and the storyteller’s) - ‘Storytelling became an incantation that temporarily suspended the usual rules of time and authority that guide the institution and our lives outside it.’ (Basting, p. 83) - Storytellers got used to performing for visitors and camera; visitors even seemed to make them come more out of themselves and show more effort as they noticed that the event was special and they were the valued protagonists - People with ADRD lose ability to weave a narrative of selfhood from memory. But given a valued social role, storytellers retained and sharpened their abilities to respond as a group and to shape a story with fragments of memory, answers born of illness, and answers born of creativity.


What difficulties did they encounter? - People with Alzheimer’s lose the ability to comprehend the world around them and to convey meaning to ‘simple things’ such as keys - Lost ability to view things in chronological order - Needed to encourage performance of the self that does not rely on memory - When storytellers got lost in the story the writer would retell every answer up to this point Additional information - For the website see http://www.timeslips.org/ - The text gives some more information on Anne Basting - The references contain interesting further readings

5.2 Beshwate, Art as therapy Beshwate T. A. and Kasin, K. (2010). Art as Therapy: nurturing well-being and relationships for people with dementia. The Journal on Active Aging, September/October 2010, pp. 36 – 42. Article can be retrieved online via: http://www.icaa.cc/1-Organizationalmember/member-articles/art-as-therapy.pdf A, CG ; I, (P) The authors (more info can be found in text, p. 42) Keith Kasin is Executive Director at Plymouth Village, an American Baptist Homes of the West continuing care retirement community in Redlands, California. Plymouth Village is home to a 10-room memory care community known as ‘The Grove’ where the project this text reports on was launched. Teresa Beshwate is Operations Specialist at Masterpiece Living and conducts research to help older-adult communities create ‘cultures of growth and potential’ and raise expectations for possibilities in aging. General information - Project launched in 2008, in Plymouth Village’s memory care community ‘The Grove’, Redlands, California - Workshops were given by professional artists - Inspiration was drawn from new art therapy research, Holly Hughes, a ‘desire to combat dementia’, and previous positive experience with artistic activities The project - Aim: provide new opportunities for self-expression to those living with dementia (especially when verbal skills fail); use art as a means to create new sources of connection and conversation for loved ones; transcend memory-loss and create a tangible object that can also serve as a communicative tool - 3 artists from different fields each launched a 10-week workshop - Participants were residents of the memory care community Art varied in the 3 workshops: 1. Drawing, painting, collage and mosaics; watercolour proved to be a favourite medium; works were functional or decorative (i.e. garden stepping-stones, coasters, flowerpots, etc.) 2. Ceramics; use of a type of clay that does not need firing in a kiln as projects could not take longer than a day for participants would forget about them 3. 3-dimensional pop-up cards, watercolour as medium, music as a tool to reduce inhibitions


- All 3 artists tried to avoid an overly structured, classroom-like atmosphere - In workshop 3 special emphasis on one-on-one interaction with participants & initial identification of participants personal interests - Text contains 20 tips to success, concerning e.g. environment or extent of support/assistance etc. Outcomes - No clear method of measurement is mentioned in the text; described outcomes spring from pure observation and artists’ perception - Caregivers and family assisted in initially stimulating participants’ willingness to become creatively active instead of only watching others - Caregivers were also helpful in reducing participants’ frustration and harsh self-criticism - Workshop 1+2 added an intergenerational component (employee’s or artists daughter) very positive reaction - Workshop 3 added music that additionally stimulated participants - Even if participants do not remember the creative process it brought enjoyment and stimulated camaraderie; looking at the exhibited objects still spreads happiness and stimulates discussion - Ceramics turned out to be a challenge for those with severe arthritis in their hands Additional information - Article contains many practical tips such as 20 tips for success, and a guide on choosing music - Article mentions interesting literature for further reading - Email addresses of authors are also mentioned

5.3 Montgomery-Smith, Musical exercises for the mind Montgomery-Smith, C. (2006). Musical exercises for the mind. Journal of Dementia Care, May/June 2006. CG, SR, A; P This article can be retrieved via http://www.innovatiekringdementie.nl/DynamicMedia/Marysia/Singing%20for%20the%20Br ain.pdf The author Chreanne Montgomery-Smith is a support and development officer with the West Berkshire branch of the Alzheimer’s Society. General information - Started with a music quiz in residential care; tried out on 3 successive afternoons First time: little attention and participation, few smiles Second time: more attention and participation, few more smiles Third time: everyone sang! - People with dementia need social networks from early stage of illness on Support groups though not to focus on difficulties Purposeful network needed to be created - Approached Nicholas Bannan (Head of music education at University of Western Australia) Started researching links between singing and dementia Pilot


Pilot scheme of 3 sessions starting January 2003, held in drama studio (resonant acoustics magnified tentative voices) - Promoted social interaction - Created warm and friendly atmosphere with flowers, tablecloths, nice tea and coffee and biscuits - Easy registration - Name badges for everyone - People with dementia and caregivers sat in circle (unordered) - Session started with a warm-up, i.e. clapping, singing people's names - All kinds of songs were used (even complicated rounds) Were learned in 3 sessions - People even sang outside the sessions - Questionnaires handed out at the end of 3 sessions made clear that they should continue The project - Since January 2004 permanent home for sessions - Facilitator Liz MacNaughton, passionate freelance voice specialist in speech and singing - Between 35 and 40 participants at weekly sessions - Held course in 2005 on ‘Singing for the brain: making singing for health happen’ Attracted others that want to start 6 new singing groups - Cooperation with other organizations (Making Music South East and the Sidney de Haan Centre for Arts in Health) Therapeutic outcomes 1. Communication (warm-up exercises that strengthen neural connection to voice and breathing mechanisms) 2. Cognition (challenges concentration and attention) 3. Engagement (emotional content of songs is emphasized to make them more memorable) 4. Confidence (growing from gradual building of skills, vocal strength and thrill of remembering so much) 5. Relationships (caregivers and people with dementia joining in positive experience reduces sense of burden that comes from awareness of problems) 6. Empowerment (people can exercise choice) 7. Stress reduction and gentle aerobic exercise (learning to exhale is very good stress buster) Also heartens mental health team to see the positive stimulation of their patients Helps the newly diagnosed to see that they will be cared for 8. By providing people with a feeling of purpose it becomes easier for them to forget their supposedly tragic condition (turns away from the tragedy created by a diagnosis of dementia as people see that they are not just demented patients at the mercy of others)

5.4 Mottram, Art Therapy with Clients Who have Dementia Mottram, P. (2003). Art Therapy with Clients Who have Dementia. Dementia, June 2003; vol. 2, 2: pp. 272-277. DOI: 10.1177/1471301203002002010 CT; I The author Pauline Mottram is an art therapist. She is also part of the Art Therapy Service of the Manchester Mental Health and Social Care Trust at Park House, in Crumpsall, North Manchester.


Note: Although Mottram in this article is talking about the benefits of art therapy in particular, the problems she mentions and the advice she gives are applicable to the general use of art for people with dementia. General information - Art in dementia care is known as diversional activity, being relaxing, encouraging concentration, enhancing self-esteem through the production of an end, and offering purposeful and gainful occupation - Mottram now wants to demonstrate the use of art therapy for people with dementia - Art therapy uses artistic expression on a deeper level, each style reflecting, projecting or reinforcing the personality of the producer - Focus on communication rather than aesthetics - Aim of art therapy is to enable creative communication and expression of preoccupations and emotions in a trusting therapeutic relationship - Privilege for the art therapist to be able to witness long dormant creativity flourishing - During creative process memories are often unlocked and processed in the artwork Difficulties - Older people often react sensitively or even negatively to being confronted with art materials: 1. Think they cannot do it as they never had arts classes (growing up in the 1930's depression or World War II; never having had the time or money) 2. Are afraid of showing themselves up and failing (having lost some abilities due to age and disease etc.) 3. May view use of art as demeaning (viewed as being in second childhood) - Often initial attempts are very tentative What art therapy has to offer - The confidence to which therapeutic relationships are obliged helps to create relationships of trust that aid in solving the initial problems - ‘Clients’ need to feel that they are respected and that their dignity is maintained - Client needs to be viewed as an individual that has lived Individualized reminiscence and life story work can help preserving a client’s identity and enhance insight and understanding Improves quality of overall personalized care - Art therapy should offer a space where thoughts, emotions and interactions can be expressed safely - Mottram finally offers 3 vignettes that illustrate how she values and interprets her clients’ artworks as multi-layered symbolic communications and how they relate to the intra-psychic content - Mottram emphasizes that for people living with dementia it is important to value the moment of communication despite the clear limitations

5.5 Peisah, Lawrence and Reutens, Creative solutions for severe dementia with BPSD C. Peisah, G. Lawrence and S. Reutens (2011). Creative solutions for severe dementia with BPSD: a case of art therapy used in an inpatient and residential care setting. International Psychogeriatrics (2011), 23:6, 1011–1013. doi:10.1017/S1041610211000457 CT, O; I


The authors Carmelle Peisah works in the Department of Aged Care Psychiatry at Bankstown Hospital, the School of Psychiatry at the University of New South Wales, and the Academic Department for Old Age Psychiatry at the Prince of Wales Hospital, in Sydney, Australia. (more info: http://au.linkedin.com/pub/carmelle-peisah/22/172/792) Gabriel Lawrence is part of the Department of Aged Care Psychiatry at Bankstown Hospital, Sydney, Australia. (more info: http://au.linkedin.com/pub/gabriel-lawrence/28/63b/a49 ) Sharon Reutens works at both the Department of Aged Care Psychiatry at Bankstown Hospital, and the School of Psychiatry at the University of New South Wales, Sydney, Australia. (more info: http://www.cmspecialists.com.au/Reutens.html ) All of them were also active during the study. Peisah and Reutens were treating clinicians and Lawrence provided the art therapy. General information - Project located in the ward and subsequent discharge (handover) to nursing home in Sydney, Australia. - The authors of this text also initiated and carried out the study. As can be seen above, Lawrence was the care-giving art therapist. Also nurses were instructed by the art therapist and replicated activities used during the sessions. - Inspiration: Behavioural and psychological symptoms of dementia (BPSD) compromise care and therefore call for targeted individualized treatment. Concerns on efficacy and safety of pharmacological treatment have prompted a search on psychosocial interventions. The project - Setup and time span: Individual and/or group meetings were scheduled once or twice per week, for 5 or 6 sessions, each lasting from 1h (min.) or 2 h (max.). - The study was tailor-made for Mrs D. an 82-year-old nursing home resident with severe dementia and BPSD. Information on the other residents participating in the group sessions is not provided. - Aim: to provide tailor-made care making use of the still active skills of the person suffering from dementia. While utilizing preserved skills of colouring the frontal-executive and language deficits should also be supported. The activity was designed to provide cues for verbal interaction as well as exercising manual dexterity and eye–hand coordination. - Material: felt material cut into shapes and colouring with stencils and pre-drawn line drawings. The material was thicker and easier than paper to pick up for older hands with a soft texture providing a self-soothing effect. -Stencils and pre-drawn lines provided structure and cuing to compensate for frontal-executive deficits. It gave her the scope to use her superior shading and colouring skills. Outcomes The outcomes described in the study spring from pure observation of Mrs. D’s behaviour before, during and after the art therapy sessions. The authors call for empirical investigation of the use of art therapy. Three major points are mentioned: 1. Artistic quality and creativity do not get lost along with other abilities of the person with dementia 2. Art therapy can provide a means of communication for those who have lost verbal skills and suffer from isolation; creative activity may foster selfhood and person-centred care 3. Art therapy can be implemented in different care environments; although benefits might be short-lived it is of worth for the moment - Therapy only lasted as long as the concentration of Mrs. D lasted - Disturbances needed to be avoided


- The authors made use of interesting further reading (see reference list)

5.6 Rusted, Sheppard, Waller, […] Art Therapy for Older People with Dementia Rusted, J., Sheppard, L. & Waller, D. (2006). A Multi-centre Randomized Control Group Trial on the Use of Art Therapy for Older People with Dementia. Group Analysis 2006 39: 517. The online version of this article can be found at: DOI: 10.1177/0533316406071447 CT, SR; I The authors Jennifer Rusted holds the post of Professor of Experimental Psychology (Psychology) at the University of Sussex, Pevensey 1 2b21. She can be reached at [email protected] , phone: UK (01273) 678325, international +44 1273 678325. Diane Waller is President of the British Association of Art Therapists. She is also Professor of Art Psychotherapy at Goldsmiths College, University of London, Vice-President of the International Society for Expression and Art Therapy, council member of the World Psychiatric Association's Section on Art and Psychiatry, and council member of the Health Professions Council. Email: [email protected] Linda Sheppard was previously a research fellow in the Department of Experimental Psychology at Sussex University and is currently Deputy Director of the Child and Family Research Group in the Department of Psychology, University of Sheffield. Address: Department of Psychology, University of Sheffield, Western Bank, Sheffield, S10 2TP, Yorkshire, UK. Email: [email protected] (Note: Baines (2007) cites a University of Sussex study by Rusted, Waller, and Sheppard from the 1990s as one of the first to conduct research in the field of art (therapy) and dementia with a control group. Baines is also listed among the findings) General information - Project located in specific centres representing a cross section of types of local facilities for people with dementia (i.e. day resource unit in hospital, privately owned and company resthomes and a resource centre funded by social services) in Sussex, UK - Group sessions were held by either art therapist (AT) or occupational therapist (OT) - Linda Sheppard supervised occupational therapists for the activity sessions - Diane Waller supervised art therapists for art sessions - Art therapy groups employed group-interactive, psychodynamic approach (Waller, 1996) - Activity groups used recreational activities; OTs were instructed not to use any formal occupational therapeutic methods or any form of art and craft work The project - Different art materials were provided - Evaluate the immediate and long-term effects of art therapy for older people with dementia - Provide an evidence-based evaluation about the use of art therapy for older people with dementia - Indicate interactions between patient and art work as an example of the art psychotherapy process Structure & time span - 1-hour group meeting per week for 40 successive weeks


- Inclusion criteria: diagnosis of dementia (mixed origin), attendance at day care or residential facility, previous diagnosis by consultant psycho-geriatrician, confirmatory diagnosis from medical records - Exclusion criteria: additional psychiatric disorders. - 45 participants with mild to severe dementia - Randomly assigned to art therapy (emotional expression central purpose) or activity groups (emotional expression not central purpose = control group), max. 6 per group Results - Standardized measures of cognition, depression, behaviour, sociability, well-being and mood taken at six assessment points (at baseline, ten, 20 and 40 weeks into group work, one and three months follow-up) - Immediate impact of group involvement on mental acuity, physical involvement, calmness, sociability, cooperative and anti-social behaviour documented after each meeting - Outside session measures: 1. Cornell Scale for Depression in Dementia (CSDD) 2. The Multi Observational Scale for the Elderly (MOSES) 3. The Mini-Mental State Exam (MMSE) 4. The Rivermead Behavioural Memory Test (RBMT) 5. Tests of Everyday Attention (TEA) 6. Benton Fluency Task - Within session measures: 1. Bond-Lader Mood Scale 2. Time Spent in Group 3. Statistical Analysis 4. Role of Funding Source Outcomes - Only 21 of the initial 45 participants completed the 9 months of therapy (10 died, 5 moved, 9 had incomplete data); outcomes based on these remaining 21 - Mental acuity, sociability, calmness and physical engagement within art therapy sessions increased on a slow, upward, linear trajectory - Cumulative changes in measures of responsiveness (long-term as opposed to short-term improvement for activity groups) - Group work began with apprehension and low levels of interest but concluded with significant engagement within group (reflected in higher depression scores at end of 40 weeks) Regular periods of small group work increase mood and sociability - Benefits extend to improved sociability in the wider day care setting Quantitative analysis Outside therapy changes: 1. Art therapy group showed significantly increased CSDD scores; no change in activity of group 2. Art therapy group had significant increase in anxious/depressed mood 3. No changes for MMSE or cognition, memory or attention (RBMT, FAS, TEA) Within session changes 1. Art therapy group over time showed significant positive changes in Bond Lader Mood Scale (all factors); negative changes for activity groups 2. Cooperative behaviour increased in both groups; antisocial behaviour stayed at a low level 3. No other measures were significant


Qualitative analysis - Art therapists gathered data in the form of systematically produced process notes for each patient (individual responders, group dynamics, significant institutional features - Each piece of artwork collected, dated and photographed for analysis in conjunction with process notes Two vignettes to illustrate interaction between patient and artwork 1. HH regularly attended despite initial difficulties in deciding what to draw - Drew a dog and returned to shading it the following week; drew himself with coral (later referred to picture as being of a young man) - Created story around dog (died of old age, aggressive, barks loudly...) - Frustrated when it didn’t work as intended and later when working with clay (arthritis made it hard for him to work with clay) - Another drawing triggered a memory of him and his brother - Was seeking (and receiving) reassurance in group Needed to be accepted for himself despite frailty and lack of skill - Relationship to group members improved as the images he produced made him become more open 2. BB resident at one of the centres where sessions were held - At first quiet and thoughtful, stuck - Tried to use pencil but didn’t work because of his hands shaking, went on to try out paints Happier using paint and colour - Images very small and detailed (flower in red, blue and green) - Said little, maintained eye contact with the female assistant and didn’t acknowledge the art therapist; changed in 2nd session - Bright and chatty, sat near the art therapist, keeping eye contact, still anxious, didn’t know what to do and so asked the assistant what she was going to do (said the art therapist didn’t seem to know either) - Became interested in the birds outside, commented on them and lamented the fact that he once could name them - Described them again in later session - Later explored clay; enjoyed and worked confidently; made life-size model of rat with all details; continued with bigger detailed models in following sessions - Intended the models for children - Gave him purpose Limitations - Small/limited number of participants with sufficient data after 40 weeks - Mixed sample (in terms of diagnosis and degree of dementia) - Test selection to identify quantitative measures of change challenging for people with dementia Additional information - The article mentions many interesting further reading - Article gives information on the authors and contact info

5.7 Waarde, Congres ‘Kunst of vliegwerk’ Waarde, H. van (2004). Nieuws van de Vereniging voor Psychogeriatrie. Congres Kunst of vliegwerk. Denkbeeld, 16 (2004), pp. 29-29 Summary


- Reflection on the congress Kunst of vliegwerk initiated by Alzheimer Nederland and the VPG (29.10.2004) - Art as means to establish contact with people with dementia - 400 participants (activity escorts, or others somehow involved in activities with people with dementia. Unfortunately not many caregivers) - Two clowns guided participants through the programme, introducing the next topic with mimics, gestures and sounds - Paul Sonnenschein (Cerein Trainingen): Importance of art for society was also emphasized (Art is fundamental to human nature and connected to meaningful functioning) - Jo Houben (Kunstenaars en Co): ability of artists to let reality appear in another way and hence to astonish people - Eric Rosenbaum (video from meeting point in Amsterdam De Pijp): showed among other things how people in that centre paint with people with dementia - Later that day workshops were organized for everyone (painting, reading out and poetry, clowning, music and dance) - Workshop ‘Dance is work’ by Joke Bos also showed video in which old Spanish people were dancing flamenco; rather than stirring compassion (as Waarde things often happens in the Netherlands when watching folkdance) pictures were of impressive beauty - Two things to bear in mind: taking people with dementia to the Cobramuseum rather than to the zoo, and flamenco rather than clog dance - Art should be in every well-being and daily activity package - Initiative started to honour student of the year (who has done innovative work for people with psycho-geriatric problems)

5.8 Wikipedia article: Art and dementia http://en.wikipedia.org/wiki/Art_and_dementia (only available in English yet) This encyclopaedia article gives a general idea of ‘the use of art in dementia care as a tool to enrich the lives of people with dementia’. It furthermore provides some interesting links for people who want to find out more about dementia and its treatment. The article explains that the visual and performing arts can offer opportunities of creative expression to people living with dementia. Within this creative process people with dementia might be able to access short- or long-term memories, emotions, thoughts, dreams and hopes, as well as explore themselves. While scientists are ‘racing’ to find a cure the number of people suffering from dementia is steadily growing. Engagement in the arts, however, provides a nonpharmaceutical approach that contributes to the soothing of anxieties and confusion and offers some opportunity to maintain or improve one's quality of life. Furthermore, the article mentions a documentary film on art and dementia called “I remember better when I paint” which is an illustration of how art bypasses limitations that dementia imposes on the individual. References Alzheimer’s Society Canada. http://www.alzheimer.ca Oliver James (20 December 2008). The Guardian, Art - the key to unlocking dementia. http://www.guardian.co.uk/lifeandstyle/2008/dec/20/dementia-research-art-therapy . Alzheimer’s and Dementia Weekly magazine. accessed 7 August 2010. http://www.alzheimersweekly.com/Art_and_Music . + A large amount of external links


6.

A first reflection on my findings

Based on the framework provided by Anne Davis Basting The literature lists that compose a major part of this report are meant to give some initial insights into the field and the amount of publications available. Furthermore, I have tried to briefly explain some of the major points of the particular texts. In this last, reflective section I will try to describe my general impressions after having dealt with this quite extensive amount of literature in a way that illustrates both the appeal of the arts for people with dementia as well as the general discourse on the topic. The readers I want to reach are people working in geriatric care, facilitators, caregivers, people working in care institutions, (creative) therapists and artists. Yet, of course, I would also like to address this report in general to people interested in alternative ways of improving the quality of life for people living with dementia. What I can tell from my literature search is that the subject of art and dementia has received increasing attention since the 1990s and especially so in recent years. Unfortunately, not all of the literature was relevant for the particular niche I have been investigating for this report, which is something I expressed earlier. Nonetheless, the fact that there is a lot of attention paid to the subject also shows in the ever more published literature surveys on the topic (e.g. Beard, 2011; Brotons, 1997). Also the website ‘dancing away the memory blues’ offers a great list of interesting literature, which is available to everyone. It was sheer coincidence that I found this site on the very last day of my internship, but I hope that others will profit from this discovery. I should mention at the beginning that I only started my search after I had acquainted myself with the writings of Anne Davis Basting, in particular her book Forget memory published in 2009 (find Bastings blog: http://forgetmemory.org/ ). However, before I go more into detail on Basting, there is yet another thing to remark. As this report shows, there is indeed an increasing use of the art in its various forms for people with dementia. The kind of art used in the projects described in the literature ranges from painting and drawing to collage, music, dance, working with clay and even poetry, storytelling and theatre, sometimes also a combination of them. I say even here because it is a known consequence of dementia that verbal skills decrease – a point I will pick up again further in this reflection. In addition to that we also increasingly lose the use of our own faculties in advanced age which is why I was rather surprised to see how people with dementia are indeed active in all kinds of activities, despite their supposed inabilities. Hence, the stigma that with age we grow to become senile beings basically incapable of most things and simply awaiting death needs to be erased from our minds. Not only is art directly used as an activity for people with dementia but also the visual arts have proven to be a less disturbing stimulus and appeal to aesthetic preferences which seem to remain constant in people with dementia (cf. Doyle; Halpern et al, 2007; Kennedy, 2005). In addition to that, the interactive art installations presented in this report aim to reach out to people with dementia in some way and try to stir their imagination. De Coupé, for instance, tries to provide people with dementia the feeling of being on a journey, as those living in care institutions often miss being ‘on the move’ (see report Droge-Wendel). Regardless of the form of art used, the basic idea is to animate or assist people with dementia in using their own imagination or creativity – whether the ultimate goal is reminiscence or any kind of therapy, increasing their quality of live or keeping them active. Ideally this would show them that they are indeed capable, worthy and valuable human beings, and not only ‘demented patients’ who need treatment, which unfortunately is a view that does exist. However,


organisations such as ARTZ (Artists for Alzheimers) and stichting Kunst en dementie (Art and Dementia Foundation) are founded upon these former principles. These principles of respect are also major steps in working past the fears of dementia that haunt us. To provide a counter narrative against dominant images that are characterized by bias and stigma towards aging, it is necessary to focus on what can still be done instead of what the person with dementia is no longer able to do (at some point in the course of the disease). Particularly this latter point can be found in many of the accounts on art and dementia that I have screened for this literature survey. As some people have pointed out, although those with dementia might forget what they have been doing or that something is their own work, it is still worth while doing it for the moment (cf.Basting,2009; Baines, 2007; Beshwate & Kasin, 2010). Furthermore, the tangible art objects that have been created by the individuals with dementia might still stir discussion even if the producers do not remember making them. These discussions are yet another appreciated side effect of both the production of works of art and looking at them. In that sense the topic of art and dementia is brought up in many different contexts, and not least when arguing for a ‘dementia-friendly community’ (cf. Verschraegen, 2010; Lokon, 2008; www.agedcareinsite.com.au ). Furthermore, we increasingly see initiatives that discuss the dominant perceptions of dementia and question whether we could not have a more nuanced picture of the disease and illustrate the different approaches and ways of therapy to it. An example of this would be the Landelijk Netwerk Dementie (National Network Dementia; find report here). This is coordinated by Vilans who are concerned with developing innovative and practice-oriented knowledge, and who also cooperate with Stichting Kunst en dementie (see reference lists). These, of course, are very positive developments that can only contribute to relieving the stigma and bias often confronted by people suffering from dementia. In her book, Anne Davis Basting provides a thorough analysis of the pictures and stereotypes we have in mind when thinking about age and dementia and on how these are formed. She also discusses how our ‘obsession’ with memory came about, which can be seen, for instance, in the constantly newly developed games designed to help us remember better and train our brain. This focus on the preservation of memory attaches great value to the ability to memorize and as a result places great pressure and a feeling of inferiority on those dealing with memory loss. For this reason it is essential that we step away from equating memory with self, whereby a loss of memory would be equated with a loss of self, which obviously cannot hold true. We therefore need to consider alternative ways to think about how to sustain identity and personhood, beyond cognition and clinical facts. It is particularly this point where the arts can provide a beginning to an answer in the search for alternatives. The arts, after all, can foster a person's well-being and feeling of value and, hence, assist in re-establishing the lost sense of dignity. Basting herself has worked as an artist, teacher, writer and director of a centre focussing on age and the community for 15 years. Her book features stories and her thoughts from this period. In her view, we have to promote stories that show a positive way of living with dementia. It is only by doing so that we can get past our fears in connection with aging and dementia, in order to be able to create better lives for people living with dementia and those caring for them. And indeed, a lot of texts address this aspect as well. According to Basting, the major reason why we fear dementia and avoid thinking about it is because we fear death and meaninglessness. We therefore need to confront the ‘fear reflex’ to gain an understanding of how it is possible to live and deal with dementia and to alleviate tragic social conditions such as isolation, stress and depression. Basting therefore explains the root of our fears in what we actually fear. The most common of all fears, Basting argues, is the one of being a burden, which is connected to us being afraid of losing our independence and


consequently losing our identity and self. In addition to that, we are apprehensive about the unknown; we constantly wonder whom the disease may affect, how quickly it will get worse, whether we will continue to recognise people, basically forgetting the simplest of things. In that sense we furthermore fear being out of control which might result in others ascribing unusual behaviour to the disease in order to cope with the personality change. Not least this may lead to a global dismissal of own intentions and the ability to affect our own life. The latter, however, Basting argues, is more likely to happen in facility settings as they follow a certain system one needs to adapt to. Accordingly, living will (often) be without choice and autonomy and, thus, can no longer be considered a real life. The prospect of being out of control, not taken seriously and dependent upon others scares us for yet another reason – we fear being violated or robbed not only of our own memories and knowledge but also of our money for the care we will need which is often very expensive. In short, we fear a meaningless existence with nothing to live for and hence make our memory the centre of our identity. In popular culture, the belief has been spread and remains prominent that dementia is all about memory loss. The fact that memory gets lost – or becomes inaccessible as Basting puts it – in the ongoing process of any form of dementia is undeniable but this does not mean, as often presumed, that we can equate this loss of memory with the loss of self (-identity). Although, the person with dementia may no longer be able to access certain information on himself or herself, the environment and so on, or might act in a way that is untypical or even irrational, we have to keep reminding ourselves that he or she is still the same person. A person that can indeed make their own choices and should be treated as such. Even if many of the people living with dementia are in pain due to their disease, nothing hurts more than being neglected both as person and rational being (cf Basting, 2009). As already implied, memory loss is only one symptom of dementia. However, it is the one we fear the most as by retrieving memories we create stories, and understanding comes through listening to and telling precisely these stories. It is that process of storing, retrieving and retelling experiences that enables us to respond to new situations over time. Hence, the narrative creates a sense of self and our understanding of, and relation to, other people. Precisely these latter points contributed largely to the development of, for example, the storytelling initiative StoryCorps, a creative storytelling project for people with dementia that does not rely on memory but may sometimes even trigger them. StoryCorps illustrates in an ideal way how we can relieve the fears that prevail in connection with dementia by successfully providing people living with dementia the opportunity to become creatively active. In these storytelling group sessions the participants are constantly reminded and assured that they can unleash their creative potential and need not be afraid of saying anything wrong, as creativity means that ‘anything goes’. Furthermore, the collection of the stories to subsequently put them into, for example, a book or a public art installation provides a sense of purpose that is of great value to people living with dementia. Hence, the way in which the individuals with dementia are approached and encouraged to participate and make use of their remaining abilities is exemplary. However, the point of storytelling is often addressed in the literature for yet another reason. As people with dementia also gradually lose the ability to speak there is a mutual need for alternative means and ways of communication. Dementia, as Basting explains, is a disease that attacks certain parts of the brain. Still, as generally known, there are several different forms of dementia of which Alzheimer’s disease would be the most common. As this already might indicate, different types of dementia have varying disease processes and therefore affect the brain in different ways – in turn different areas that store memory are affected. Hence, the way in which the disease might affect the person with dementia may differ. Research, however, indicates that the ability and desire to


express ourselves creatively seems to remain largely unharmed by the disease (cf. Beshwate & Kasin, 2010). Moreover, as the ability to speak gets lost in the course of the disease, creativity and the creative use of art materials can serve as the only remaining means of communication and expression for the person living with dementia (see for example Beshwate & Kasin, 2010; Peisah et al, 2011; parentgiving; etc.). Any kind of creative stimulation or working with art materials is a perfect way to approach the limitations that people with dementia have to cope with. So creative art activities can help to reduce the depression and isolation of people with dementia, offering them the power to chose and decide for themselves, such as which art material they will use and what they will do with it (Hannemann, 2006). Yet, of course, the art materials need to be chosen very carefully as, for example, severe arthritis may make it difficult to work with ceramics but may not have any effect on producing collages. Using the ‘wrong’ kind of art will therefore in most cases be very counterproductive as it would reinforce the sense of being unable to make use of skills that once existed, and thereby increase the depression of the person with dementia (cf. Beshwate & Kasin, 2010; Mottram, 2003; Rusted et al, 2006). Furthermore, many studies emphasize the importance of person-centred care to develop tailormade programmes for individuals with dementia. The underlying thought is that the programme facilitators need to be able to identify the preferences of the participants before even starting the activity or at least to develop it in the course of the programme. In addition, studies stress the fact that creativity comes from within a person, from their heart, and therefore does not rely on memory (cf. Hayes & Povey, 2011; Innes & Hatfield, 2002; Peisah et al, 2011). Even making a scratch on a piece of paper or using a single colour can have an effect on the person with dementia. Moreover, it might provide some insight into the person that the facilitator can make sense of and integrate into the care (or inform caregivers about) (cf. Baines, 2007). Although a lot of research on the subject ‘art and dementia’ has indeed been conducted it is, not all in all that surprising, mainly focused on the use of art therapy for people with dementia. In turn, participants are often treated as ‘clients’ or ‘patients’ rather than ‘people with dementia’. Still, the underlying thoughts that are expressed also in these studies are very much transferable to the general idea of producing works of art with and by people with dementia. Art therapist Patricia Baines, in my view, has a very ideal way of approaching her ‘clients’ living with dementia. This shows in the way she writes her stories about people with whom she had touching and memorable sessions. She, for that matter, addresses them by name throughout her text and reports on the enormously positive effects she has experienced using art therapy to awaken and assist the creative potential in people with dementia (See Baines, 2007). Her passionate and empathic way of writing is very appealing and leaves her reader without any doubt that she indeed has a better way of life and an increased personal well-being of her ‘clients’ at heart - hence the title of her 2007 publication Nurturing the Heart. As indicated before, many of the findings have as their main concern that it is necessary to create better living conditions for people with dementia and in that briefly address the relevance of art. These hints throughout the literature seem to suggest that there is indeed a large body of publications concerned with the topic. However, the ideas seem to be very much in their infancy or at least a rather early stage of development. This also shows in the recurring claim that more research needs to be done as this seems such a promising, fruitful, and beneficial ground. Still, it shows an increasing focus and attention on the subject, and rightly so. All studies, project descriptions, theoretical texts and research that I have come across show certain positive outcomes, both in the short-term and long-term. Although my findings cannot, of course, provide a complete picture of the discourse on this topic – not least because of its ongoing growth – I still hope to have been able to provide some insight.


Finally, as I have already mentioned, I hope those reading and making use of this report will feel inspired to approach people with dementia in a different way and help make their lives better by fostering their intrinsic human need to express themselves creatively. Marina Brittner


Art and Dementia. A survey into reports on active participation in the arts of aging people with dementia

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