Suzie's MRes Blog 1, boldly filing gaps

bold Masters of Research, Blog 1 by Suzie Beresford

How do arts-based methods facilitate equality of voice, democratise, and encourage engagement in group settings?

This blog is part of a series of three, it is designed to share the research findings undertaken as part of a Master of Research degree (MRes). It will help the readers to explore the effectiveness of arts-based methods to develop social leaders in Dementia.

Boldly filling gaps

Hi, I’d like to introduce myself my name is Suzie, and I took part in the first cohort of the bold Online Social Leadership Programme. In fact, we may have already met, I might have been on your bold cohort, at a bold community event or you may even have helped inform this research study.

Being part of the bold community has been truly inspirational. It has felt like a warm hug resulting in being part of a supportive community and has built my confidence. So much so that when I was given the chance to complete a Masters of Research (MRes) I based my study on the impact of using arts-based methods to create social leaders in dementia. The question that guided the study was : How do arts-based methods facilitate equality of voice, democratise, and encourage engagement in group settings?

Aims and Objectives

The aims were

To discover how my life experiences relate to the personal impact of bold.
To explore the shared themes gathered from bold partners and create meaning of these experiences.

The objectives were

To gather data through reflective journalling and explore this with further reflexivity.
To view my online bold journey to help inform my visual bold interpretation.
To find out from other bold partners their experience of the bold program through creative hermeneutic analysis.
To compare this to my personal experience.

Defining Terms

Before I could delve into finding the answer to my guiding question I had to first define what is meant by arts-based methods and then discover the gaps in current relevant studies. There are many different activities and therapy approaches which come under the bracket of ‘the Arts.’ Some examples of these are music, visual art, drama, dance, and storytelling. You will most likely have taken part in some of these, maybe even all of them if you took part in the bold programme.

Next came the arduous task of looking for relevant studies which looked at these arts-based methods within the field of dementia. To do this I had to find key words and search through databases which contained studies on this subject. The keywords were – ‘dementia,’ ‘arts,’ ‘arts-based’ and ‘creative’. As you can imagine the results were vast so to help me narrow down the search I only used studies from 2021-2023 (See Figure 1).

Figure 1 Database search

Throughout the research papers there were a number of terms repeatedly used. These were, self, identity, belonging and wellbeing. You may or may not be familiar with these terms but to make sure we are all on the same page, it might be an idea just to clarify what these are.

Self and identity are aspects of a person, self can relate to how we see ourselves, our personal characteristics and our identity can be affected by how we are perceived by others. Professor Tom Kitwood was a dementia specialist and authored a number of books. In his book ‘Dementia Reconsidered’ he explains that the way people are treated can have an effect on how they see themselves and their individual identity. He encourages all of us to see beyond a diagnosis.

Similarly, Professor Steven R Sabat, describes self as having three parts and the self that I refer to is ‘Self 3’ which requires recognition from others and enables us to form our identity. Prof Kitwood explains identity further as a “narrative, a story to present to others.” So, other people play a key role in helping us to be ourselves. Perhaps you may have experienced a negative response to sharing a diagnosis of dementia or even witnessed this happen. This type of experience can in turn make you feel upset or reduce your self-confidence and how you feel about yourself.

Belonging is one of our basic human needs, for example we all belong to a family, or a group of friends. Belonging helps us to feel like we fit in, enabling us to form both our identity and relationships with others while enabling us to maintain positive wellbeing. Wellbeing is described by the World Health Organisation as something that relates and maintains our overall health which covers our social, physical and mental health.

Reviewing the current studies

Once I had found the current studies that related, I was able to discover some of the benefits of arts-based methods and identified three key themes. These were;

Gaining Knowledge; Reduces stigma.
The positive impact of art-based activities on carers.
Using arts-based activities to enable expression, communication, connection, and a sense of self in people living with dementia.

Gaining Knowledge; Reduces stigma

Knowledge was highlighted as a key aspect of facilitating arts-based practice. This knowledge is knowledge of dementias, the participants, the intervention itself and approaches that are person-centred. The studies reviewed showed that arts-based methods could be used as a tool to reduce stigma and change individual perceptions of dementia.

One study showed a reduction in the stigma surrounding dementia as those taking part in the sessions began to change the way they viewed people living with dementia as they watched them develop as part of a community choir.

“ a great equalizer because you can’t tell who has dementia, who the care partners are—we’re all the same” (p6).

This study helped to challenge misconceptions about those living with dementia and their ability to get involved and contribute.

The studies reviewed went on to point out further effects of taking part, gaining confidence, positive self-perception and maintaining identities. The sessions also helped to change how those who participated viewed the arts. Previously some participants had not viewed themselves as creative, but they now felt they had learned a new skill.

The positive impact of art-based activities on carers.

Arts based activities were used to provide a platform to enable a sense of self and reclaim individual identity beyond being known as a carer For example one study explained that taking part in a community-based singing and song writing group helped to reduce the feeling of being socially isolated. The group taking part consisted of family carers and people living with dementia, facilitated by a music therapist within an Arts Centre. Carer’s who took part also felt that the group helped them feel relaxed, refreshed and confident while gaining peer support and watching their loved one enjoy the activity.

Using arts-based activities to enable expression, communication, connection and a sense of self in people living with dementia.

Engagement through the ‘Art’s’ helped focus on individual strengths and used creativity as a way to immerse participants in the process of creating. This enabled other ways to communicate through things like music, movement and visual art. Using these arts-based methods helped to establishing connection and interaction, while aiding brain function. The studies incorporated things like music, poetry, movement and visual art. These approaches helped people living with dementia to express themselves and increased brain function within a failure free environment. It enabled those who took part to find purpose and a sense of self.

The Gaps

After reviewing the studies, I could see some gaps in the current research literature. For example, when those facilitating activities didn’t have prior experience or knowledge about people living with dementia. This meant they were not mindful of individual abilities when developing projects or didn’t produce clear instructions. I don’t know about you but if I am asked to complete something and don’t have clear instructions for the task I struggle to engage and complete it. So, it’s key to provide these and to be aware of individual ability.

Some of the programs would have benefited by consulting those living with dementia. For example, placing emphasis on the carer views but failing to incorporate those living with dementia. Carers needs are important, and they should be involved. However, both the carer’s and the needs of people living with dementia should be included in sessions.

I had also noted that those who took part in the studies were relatively small in number. But this allowed for the studies to contain more detailed information. Although this was the case for the majority of the studies it was apparent that they had similar findings which really helped to validate them and make the information applicable to different settings.

In all I noted six gaps which could be further investigated within the current studies reviewed;

The need to ensure the voice of those with lived experiences both living with and caring for is included.
Having the knowledge needed to facilitate and understand individuals and interventions.
Base the approach on individual needs and capacity.
Studies which cover diverse cultural backgrounds.
Studies which cover different types of dementia.
Long term studies to show results over a period of time or follow up previous interventions.

The research study that was completed for my MRes helped to address: the need to ensure the voice of those with lived experiences both living with, caring for, and having the knowledge needed to facilitate and understand individuals and interventions. It relates how the research used the knowledge gained through;

my experiences of dementia
my experience of the bold program
the shared experiences of bold partners (those who also took part in the bold programme)

The next two blogs will further share this knowledge and next time we will see how this relates to my own experiences…

To read more about the studies discussed please see the reference list below, to find these copy and paste or type into Google scholar.

References

Gaining Knowledge; Reduces stigma

George, D.R. et al. (2021) ‘An arts program to improve medical student attitudes toward persons with dementia’, Journal of the American Geriatrics Society, 69(8). doi:10.1111/jgs.17338.

Jeong, J.M. (2021) ‘Co-creative affordance: Rethinking “Beyond loss” in dementia through co-dwelling’, Medical Anthropology, 40(1), pp. 35–49. doi:10.1080/01459740.2020.1768252.

Jeppson, T.A., Nudo, C.A. and Mayer, J.F. (2022) ‘Painting for a purpose: A Visual Arts program as a method to promote engagement, communication, cognition, and quality of life for individuals with dementia’, American Journal of Speech-Language Pathology, 31(4), pp. 1687–1701. doi:10.1044/2022_ajslp-21-00300.

Jonas-Simpson, C. et al. (2022) ‘Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia’, Dementia, 21(1), pp. 61–76. doi:10.1177/14713012211027016.

Jones, C., Windle, G. and Edwards, R.T. (2020) ‘Dementia and imagination: A social return on investment analysis framework for art activities for people living with dementia’, The Gerontologist [Preprint]. doi:10.1093/geront/gny147.

Lee, S., O’Neill, D. and Moss, H. (2022) ‘Promoting well-being among people with early-stage dementia and their family carers through community-based group singing: A phenomenological study’, Arts & Health, 14(1), pp. 85–101. doi:10.1080/17533015.2020.1839776.

Levenberg, K., George, D.R. and Lokon, E. (2021) ‘Opening minds through art: A preliminary study evaluating the effects of a creative-expression program on persons living with dementia and their primary care partners’, Dementia, 20(7), pp. 2412–2423. doi:10.1177/1471301221997290.

McMahon, K. et al (2021). Using Group Therapeutic Song writing to Support the Dyadic Relationship Between People Living with Dementia and Their Family Caregivers: Perspectives from Music Therapists. Australian Journal of Music Therapy, 32(2), 57–78.

McManus, K. et al. (2022) ‘The effect of a performing arts intervention on caregivers of people with mild to moderately severe dementia’, Aging & Mental Health, 26(4), pp. 735–744. doi:10.1080/13607863.2021.1891200.

Motta-Ochoa, R. et al. (2022) ‘Enacting Agency: Movement, dementia, and interaction’, Arts & Health, 14(2), pp. 133–148. doi:10.1080/17533015.2021.1894464.

Robertson, J.M. and McCall, V. (2020) ‘Facilitating creativity in dementia care: The co-construction of Arts-based engagement’, Ageing and Society, 40(6), pp. 1155–1174. doi:10.1017/s0144686x18001575.

Shoesmith, E., Charura, D. and Surr, C. (2021) ‘Acceptability and feasibility study of a six-week person-centred, therapeutic visual art intervention for people with dementia’, Arts & Health, 13(3), pp. 296–314. doi:10.1080/17533015.2020.1802607.

Skingley, A. et al. (2021) ‘Carers create: Carer perspectives of a creative programme for people with dementia and their carers on the relationship within the (carer and cared-for) dyad’, Dementia, 20(4), pp. 1319–1335. doi:10.1177/1471301220933121.

Smith, A.P. et al. (2022) ‘Choral singing and dementia: Exploring musicality as embodied and relational accomplishment’, Journal of Aging Studies, 63, p. 101077. doi:10.1016/j.jaging.2022.101077.

Synnes, O. et al. (2021) ‘A complex reminding: The ethics of poetry writing in Dementia Care’, Dementia, 20(3), pp. 1025–1043. doi:10.1177/1471301220922750.

Tan, W.J. et al. (2021) ‘The impact of the arts and dementia program on short‐term well‐being in older persons with dementia from Singapore’, Australasian Journal on Ageing, 41(1), pp. 81–87. doi:10.1111/ajag.12992.

Tan, W.J., Lim, Xavier Yan, et al. (2022b) ‘The impact of the arts and dementia program on short‐term well‐being in older persons with dementia from Singapore’, Australasian Journal on Ageing, 41(1), pp. 81–87. doi:10.1111/ajag.12992.

The positive impact of art-based activities on carers

Kinsey, D. et al. (2022) ‘A conceptual model of the impact of including carers in museum programmes for people with dementia’, Dementia, 21(8), pp. 2584–2600. doi:10.1177/14713012221126803.

Petts, L. and Urmston, E. (2022) ‘An exploration into the experience of family caregivers for people living with dementia in a community dance class’, Research in Dance Education, 23(1), pp. 126–141. doi:10.1080/14647893.2021.1993175.

Using arts-based activities to enable expression, communication, connection, and a sense of self in people living with dementia.

George, D.R. et al. (2021) ‘An arts program to improve medical student attitudes toward persons with dementia’, Journal of the American Geriatrics Society, 69(8). doi:10.1111/jgs.17338.

Howard, E.P. et al. (2021) ‘ArtontheBrain: Results of a pilot project among long-term care residents’, Research in Gerontological Nursing, 14(5), pp. 235–243. doi:10.3928/19404921-20210825-03.

Jeong, J.M. (2021) ‘Co-creative affordance: Rethinking “Beyond loss” in dementia through co-dwelling’, Medical Anthropology, 40(1), pp. 35–49. doi:10.1080/01459740.2020.1768252.

Mittner, L. (2022) ‘Resonating moments: Exploring socio-material connectivity through artistic encounters with people living with dementia’, Dementia, 21(1), pp. 304–315. doi:10.1177/14713012211039816.

Motta-Ochoa, R. et al. (2022) ‘Enacting Agency: Movement, dementia, and interaction’, Arts & Health, 14(2), pp. 133–148. doi:10.1080/17533015.2021.1894464.

Quinn, J., Blandon, C. and Batson, A. (2021) ‘Living beyond words: Post-human reflections on Making music with post-verbal people’, Arts & Health, 13(1), pp. 73–86. doi:10.1080/07317115.2021.1936737.

Reel, C.D. et al. (2022) ‘Bringing art to life: Social and activity engagement through art in persons living with dementia’, Clinical Gerontologist, 45(2), pp. 327–337. doi:10.1080/07317115.2021.1936737.

Smith, A.P. et al. (2022) ‘Choral singing and dementia: Exploring musicality as embodied and relational accomplishment’, Journal of Aging Studies, 63, p. 101077. doi:10.1016/j.jaging.2022.101077.

Synnes, O. et al. (2021) ‘A complex reminding: The ethics of poetry writing in Dementia Care’, Dementia, 20(3), pp. 1025–1043. doi:10.1177/1471301220922750.

Gaps and limitations

Jenkins, L.K., Farrer, R. and Aujla, I.J. (2021) ‘Understanding the impact of an intergenerational arts and Health Project: A Study into the psychological well-being of participants, carers and artists’, Public Health, 194, pp. 121–126. doi:10.1016/j.puhe.2021.02.029.

Jeong, J.M. (2021) ‘Co-creative affordance: Rethinking “Beyond loss” in dementia through co-dwelling’, Medical Anthropology, 40(1), pp. 35–49. doi:10.1080/01459740.2020.1768252.

Kinsey, D. et al. (2022) ‘A conceptual model of the impact of including carers in museum programmes for people with dementia’, Dementia, 21(8), pp. 2584–2600. doi:10.1177/14713012221126803.

Motta-Ochoa, R. et al. (2022) ‘Enacting Agency: Movement, dementia, and interaction’, Arts & Health, 14(2), pp. 133–148. doi:10.1080/17533015.2021.1894464.

Synnes, O. et al. (2021) ‘A complex reminding: The ethics of poetry writing in Dementia Care’, Dementia, 20(3), pp. 1025–1043. doi:10.1177/1471301220922750.