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«The Arts for Dementia in North America; Learning from Practice Amy Veale Churchill Fellow 2015 Photo of the ‘At this Age’ group run by Dr Dalia ...»

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The Arts for Dementia in North America;

Learning from Practice

Amy Veale

Churchill Fellow 2015

Photo of the ‘At this Age’ group run by Dr Dalia Gottlieb-Tanaka, Chair of the Society for the Arts in Dementia Care

]

Acknowledgements

I am hugely grateful to the Winston Churchill Memorial Trust (WCMT) for awarding me a

Churchill Fellowship. My experience in North America was an enriching one that has inspired

me to pursue a PhD in this area.

I would also like to thank all the artists and administrators who so warmly welcomed me during my travels. A full list of the organisations I visited with are noted in the appendix, however I would like to give a particular mention to the following individuals: Anthony Hyatt from Arts for the Ageing; Dr Gay Hannah and Greg Finch from the National Center for Creative Aging; Gary Glazner from the Alzheimer’s Poetry Project; Marcia Gilden from Elders Share the Arts; and Jeanne Sommerfield and Dalia Gottlieb-Tanaka from the Society for the Arts in Dementia Care.

] Contents Introduction p4 Evidence of the value of arts for healthy ageing p5 Learning from Practice p7 Museum based programmes p7 Verbal expression; storytelling and poetry p11 Music and movement p14 Art making p19 Key themes p21 Human needs p21 Choice p22 Professionalism p24 Funding, research and evaluation p25 Conclusions and recommendations p26 Itinerary p28 ] Introduction Having spent the last eight years working in ageing policy and research2 I am aware of the need for more effective, person-centered approaches to dementia care. While the most basic needs of those living with dementia are often met, policy makers and those involved in service delivery, need to consider how people with dementia can be better supported to live fulfilling and dignified lives.

Dementia is a growing issue. According to the Alzheimer’s Society there are currently around 850,000 people living with dementia in the UK. It is predicted that this figure will increase to 1 million by 20253. Pharmaceutical research is making slow progress, meaning that a cure for dementia is unlikely to happen in the near future4, while the frequent use of drugs, particularly antipsychotic drugs, to treat the behavioural and psychological (BPSD) symptoms of dementia (e.g. aggression and agitation), has been recognised as a cause for concern. These medications can cause side effects such as Parkinsonism and drowsiness which can lead to falls and other adverse events5. They also possibly hasten cognitive decline. People with severe dementia are found to be particularly sensitive to these effects and their quality of life can be significantly reduced by the commencement of these medications. The testing and promotion of effective non-pharmacological interventions is therefore both necessary and desirable.

Use of the arts as a non-pharmacological intervention for dementia has grown in recent years. Before embarking on my Fellowship to North America, while I was aware of the existence of some arts based dementia programs in the UK, I was unaware of the huge potential that these programs held. My ignorance in this area can be explained in part by my own assumptions. Prior to my Fellowship I subscribed to the commonly held view that people could be divided into non- artists and artists and that I, unfortunately, was not one of the gifted few. Whilst I have always appreciated the arts, I saw no point in developing my own artistic expression. This led me to believe that artistic approaches to dementia care I have worked as Research Manager and Policy Officer for Age NI https://www.alzheimers.org.uk/statistics I’m Still Here; a breakthrough approach to understanding someone living with Alzheimer’s. Dr John Ziesel.

Overshott, R. ‘Non-pharmacological Treatment of Severe Dementia: An Overview’, in A Burns & B Winblad (eds), Severe Dementia, pp. 163-175; New York, NY, US: John Wiley & Sons Ltd; 2006.

] would be most relevant to those individuals who had cultivated their artistic expression prior to diagnosis. Since applying to the Winston Churchill Memorial Trust, I have been forced to revisit my opinions. My previously held belief, that (with the exception of the gifted minority), artistic expression had no real benefit beyond being a pleasant pastime or hobby, has been challenged. I am now convinced of the unique healing power of the arts, particularly for those living with dementia.

During my Fellowship I witnessed the huge potential of the creative arts to engage the emotional, social, and spiritual needs of those living with dementia; needs that can often go unaddressed in dementia care. The arts ‘tap into’ many different areas of the brain, (unlike language for instance), which means that the ability to appreciate and even participate in the arts is often less compromised after diagnosis than other activities. Music, art, drama, dance, and poetry can create a new space for communication, expression and human connection.

As Dr John Ziesel, an expert in dementia care describes, ‘the arts can provide meaning in what many experience as an increasingly meaningless life.’6 From the outset of my Fellowship I wanted to understand not only the value of arts based programmes, but also the components of various arts based interventions, or the features of these programmes that make them successful. The ultimate aim of the Fellowship was not only to communicate the potential of these programmes, but also to promote ‘best practice’ for those wishing to undertake similar programs.





In seeking to answer these questions, I set out on a six week journey across North America visiting a wide range of arts based programmes. During this time I observed programmes, spoke to older people taking part, interviewed arts practitioners, and explored the existing research evidence base on this topic. Findings from interviews, observations and research papers are outlined below.

I’m Still Here; a breakthrough approach to understanding someone living with Alzheimer’s. Dr John Ziesel.

] Evidence of the value of the arts for healthy ageing The arts and ageing field has been evolving slowly but steadily since the late 1990s. Since this time there has been a small, but growing body of evidence to show that active participation in the arts can be particularly beneficial to older people.

Dr Gene Cohen was considered to be a pioneer in this area. An American Psychiatrist, Dr Cohen was an advocate of creative pursuits in later life, championing the idea that all people have untapped stores of creativity. His theories were based on the understanding that the brain can continue to create new cells at any stage, so long as it is engaged in new and challenging activities. Dr Cohen not only believed that professionally conducted, cultural arts programs would lead to increased levels of creativity, but that they would also result in improved health outcomes and a reduction in disease. His 2006 study, published in the Gerontologist found evidence to support this view. Older participants engaged in a weekly chorale group reported a higher overall rating of physical health, fewer doctor visits, less medication use, fewer instances of falls, and fewer health problems than a comparison group7.

In their 2013 review of the scientific literature on arts based interventions, Noice and Noice found evidence that older people who actively participated in dance, expressive writing, music (singing and instrumental), theatre arts, and visual arts showed improvements in memory, creativity, problem solving, everyday competence, reaction time, balance/gait, and quality of life8. In their own study of the impact of the theatre arts for cognitive health, Noice and Noice found that those individuals randomly assigned to acting classes significantly outperformed both those undertaking singing instruction and those assigned to a control group on almost all cognitive measures9. What is interesting about this study is that participants were randomly assigned to each of the groups (control, singing, and theatre), so that, in principle, effects should not be explained by any bias in those taking part in the theatre group. It also raises the possibility that some arts interventions may be more effective than others.

Cohen, G. D., Perlstein, S.,Chapline, J., Kelly, J., Firth. K. M., & Simmens., S., (2006). The Impact of Professionally Conducted Cultural Programs on the Physical Health, Mental Health, and Social Functioning of Older Adults. The Gerontologist, 46 (6): 726-734.

Noice, T., Noice, H., & Kramer, A. F., (2014). Participatory arts for older adults: A review of the benefits ad challenges. The Gerontologist, 54(5): 741-753.

Noice, T., Noice, H., & Kramer, A. F., (2015). Theatre arts for improving cognitive and affective health.

Activities, Adaptation & Aging, 39(1): 19-31 ]

Learning from Practice

Arts based programs seem to play a valuable role in healthy ageing. The improvements in cognitive capacity demonstrated in the studies above suggest that arts participation may even be effective in preventing or delaying the onset of dementia. However this Fellowship was focused specifically on those currently living with dementia. I wanted to understand how and why the arts are effective for dementia. I wanted to gain a deeper insight into the features of the various art programmes that make them particularly suitable for this population. In order to do this I gathered the views of arts practitioners, administrators and academics, and carried out a series of observations in order to determine what ‘good practice’ looks like. I also consulted the research literature and include references to academic studies where these were available.

Rather than provide a chronological list of each individual I interviewed and each programme I visited, I have organised this section according to the type of arts based program. A chronological list of my visits can be found in appendix 1.

Museum based programmes New York is one of the world’s greatest hubs of culture and arts, and this is reflected in the amount of activities available for those living with dementia. The Connect2culture program, run by the Alzheimer’s Association, is a cultural arts program that supports museums and other cultural venues around New York in developing ongoing programs for people with dementia and their caregivers. With the support of the Connect2culture program, a considerable number of museums in New York now offer these programs.

One of the first museums to develop such a program was the Museum of Modern Art, or MoMA. Developed in 2006, MoMA’s offerings for individuals with dementia and their care partners include by-request programs for groups coming from care organizations, such as assisted-living facilities, nursing homes, and adult-care centers. These programs incorporate lively discussions of artworks as well as art-making components, and take place at the Museum or off-site. The Museum also offers Meet Me at MoMA, a monthly interactive art tour and gallery-discussion program for individuals with dementia and their family or professional care partners. MoMA has developed a comprehensive range of materials that are free to the public. They have been developed to support museums that wish to develop their own programs and include guides outlining the processes for creating educational ]

experiences within museums, care-facilities, and even in the home:

https://www.moma.org/meetme/resources/index During my time in New York I visited with the Connect2culture program, the Brooklyn Museum, the Sights and Scents Program at the Cloisters Museum and Gardens, and the Jewish Museum. Museum programmes typically follow a similar format. Educators who have been specially trained in dementia spend around one hour facilitating conversations with people living with dementia and their care partners. Discussions tend to focus on a small number of art works that speak to the same theme, and each artwork is viewed in turn. For example, during my visit to the Brooklyn Museum, the theme for the tour was summer holidays, and all the paintings related to this theme in some way. Five paintings were viewed in total, with around ten minutes spent at each painting. Depending on numbers registered, two small groups are typically guided separately through a tour as smaller groups are preferred. Tours usually run once a month and often include an art making session either at the end of the tour or at the next session. For example at the Jewish Museum, participants alternate sessions between art appreciation and art making. During art making sessions they will base their creations on what they viewed at the previous session. Participants are given a brief tour of the artwork they had viewed to act as a reminder at the beginning of the session.

Case Study of a museum based program

People with dementia and their care partners gathered in the museum lobby waiting for the art tour to begin at the Brooklyn Museum. Most people in the group were engaged in conversation, but one particular gentleman appeared to be distracted and anxious. He repeatedly asked members of the group where he was, why he was there, and who else was coming. He continued to ask these questions until the tour began. Once the tour started, the change in the gentleman was remarkable. His anxiety immediately appeared to subside. He became calm, energised and focused, and verbally expressed his enjoyment of the different artworks throughout the tour. While his observations were very basic (he mostly pointed out the shapes and colours that he could identify, rather than discussing the theme), the art seemed to offer a source of joy and comfort. It seemed like the art triggered these emotions.



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