The Impacts of Museum-led Dementia Awareness Programmes on Informal Carers’ Subjective Wellbeing. A perspective on the House of Memories case-study

Author(s):

Rafaela Ganga(presenting / submitting)Kerry Wilson Gayle Whelan

Conference:

ECER 2017

Network:

29. Research on Arts Education

Format:

Paper

Session Information

29 SES 05 B, Percepting the Space

Paper Session

Time:

2017-08-23

13:30-15:00

Room:

W2.05

Chair:

Luis Castro Pauperio

Contribution

Dementia and Alzheimer disease, in England and Wales, are currently the leading cause of death for men and women aged 80 years and over. Dementia and Alzheimer disease has replaced ischemic heart diseases as the leading cause of death, in part because people are living longer, there is a better understanding of dementia, and improved diagnosis is also likely to have helped increased reporting of dementia as cause of death on certificates (Office for National Stratistics, 2015).

Dementia refers to a variety of diseases that are characterized by a progressive cognitive and overall decline. There is no cure for dementia, but culture and art-led programmes have been recurrent in literature as particularly beneficial strategies to improving the lives of people with dementia and their caregivers (formal and informal) (Camic, Baker, & Tischler, 2015; Rosenberg, 2009). It has been shown that cultural and artistic engagement can lead to a decrease in depression (Musella, et al., 2009), as well as an increase in positive feelings such as enthusiasm and enjoyment (MacPhersona, Birdab, Andersonab, Davisa, & Blair, 2009), and specially an improvement of subjective wellbeing of people with a diagnosis of dementia and their carers (Kinney & Rentz, 2005).

In 2012, National Museums Liverpool (NML), with funding from the Department of Health (UK), created House of Memories as a museums-led dementia awareness training programme that provides dementia carers (formal and informal) with resources to support people to live well with the condition. This programme uses museum collections as conversation starters in light of reminiscence therapy techniques.

Within the UK there is growing momentum around arts and cultural commissioning within social and public services, illustrated by a propensity of referral schemes such as ‘arts on prescription’. In this context, reminiscence therapy techniques have become increasingly popular within the museum field, with numerous projects that have been shown to have therapeutic value, and cognitive benefits for people with dementia (cf. Goulding, 2013; Windle, et al., 2014; Young, Camic, & Tischler, 2015; Chatterjee & Noble, 2013).

House of Memories began as a full-day museums-based training intervention combining dramatic set pieces, forum theatre, interactive facilitation, museum and gallery tours, reminiscence therapy techniques and museum education activities. The programme is supplemented by training resources including the My House of Memories app, which can be downloaded for use in a range of settings. The programme has also been adapted and developed for delivery in different professional environments, and with several national and international partner museums.

The House of Memories Family Carers’ Awareness Day, designed specifically for family carers and community volunteers, addresses the fact that dementia is not an isolated condition, it affects the whole community, with special incidence on family caregivers (Lynch, et al., 2009). Caring for someone with dementia can be associated with higher levels of depression and isolation (Schulz & Martire, 2004). Despite the importance of family members as a resource for people with dementia (Department of Health, 2009 ) it is not uncommon that informal carers are perceived as ‘silent patients’, once their own health and subjective wellbeing is second to the one of the person they care for (Alzheimer's Society, 2016).

In this sense, this study sought to develop an empirical understanding of the impact of House of Memories Family Carers’ Awareness Dayacross 4 museums on the subjective wellbeing of 50 participating
dementia carers and the subsequent perception of their 'culture of care'; as well as to understand how the process of engaging with museum collections in the social and physical context of a museum, and with the My House of Memories app impacts on caregivers perceptions and uses of non-medical approaches and museum-led dementia care.

Method

Focused on the House of Memories dementia awareness programme as a case study, the ‘Crossing Boundaries: The value of museums in dementia care’ is a holistic research framework grounded on a multi-method strategy that includes three distinct but inter-related work packages (WPs), which will run concurrently throughout the project: WP1 – Professional Learning and Development – explores learning and development outcomes amongst professional carers. Research design for this WP is informed by situated learning theory and communities of practice conceptual framework. Individual research methods include social network analysis (Wellman, 2007) and the development of a standardised measure of learning outcomes, skills development, attitudinal outcomes and personal competences, mapped against Dementia Core Skills Education and Training Framework. Quantitative data is enhanced by follow-up focus group sessions with selected participants, to explore in detail the attributable learning contexts and developmental conditions of House of Memories in relation to professional learning and development outcomes. WP2 – Wellbeing and Culture of Care – assesses the impact of House of Memories on the subjective wellbeing of informal carers. This WP is framed by existing studies on the impact of arts and culture on subjective wellbeing, including studies within the dementia field (Brooker, 2007; Camic, Baker, & Tischler, 2015). Research strategy comprises two online surveys – applied before and after the training to 50 informal carers – including two standardised measures of subjective wellbeing adapted from the 12 item Zarit Burden Interview (Ballesteros, et al., 2012), and the Warwick-Edinburgh Mental Well-being scale (Warwick Medical School , 2017) that aim to assess the impact of the programme on the subjective wellbeing of carers. Participant observation of 8 museum-led intervention sessions along with a series of semi-structured interviews with museum staff are conducted to explore in-depth the impact of the programme across the participating museums. This paper draws on the methodologic strategy and main outcomes of WP2. The WP3 – Social Value and Return on Investment – runs Social Return On Investment (SROI) workshops in order to determine the return on investment of the House of Memories programme. Testing emerging findings of WPs 1 and 2 as valid impact indicators, this WP informs participating stakeholders and supports policy and strategic development of a 'dementia friendly' cultural sector in the UK (Nicholls, Lawlor, Neitzert, & Goodspeed, 2012; Throsby, 2001).

Expected Outcomes

WP1 has revealed significant outcomes for participating professional dementia carers. Outcomes include increased awareness and understanding of dementia and its implications; improved subjective wellbeing for professional dementia carers; skills development including listening, communication and professional empathy; improved capacity for [individual and collective] critical, reflective care practice; confidence in trying new, creative approaches to dementia care; and increased cultural engagement with museums (Wilson & Grindrod, 2013; Wilson & Whelan, 2014). WP1 outcomes described above relating to the ‘culture of care’ amongst House of Memories participants adhere closely to objectives outlined by the National Dementia Strategy launched in 2009. House of Memories has subsequently been directly referenced and commended within leading policy response documents including the UK Prime Minister’s Challenge on Dementia (Department of Health, 2012) and the recent review of care standards for people living with dementia (Care Quality Commission, 2014), with House of Memories cited as a creative intervention that focuses positively upon the individual’s quality of life. WP2 research findings, which this paper is focused on, to date (further data collection in progress) infer a relationship between the uniquely artistic and cultural elements of the House of Memories programme and improved ‘culture of care’ within participating communities, mainly a close relationship between carers’ own subjective wellbeing, and their caring and cultural practices.

References

Ballesteros, J. et. al. (2012). Unidimensional 12-Item Zarit Caregiver Burden Interview for the Assessment of Dementia Caregivers’ Burden Obtained by Item Response Theory. Value in Heath 15, 1141-1147. Brooker, D. (2007). Person-centred Dementia Care: making services better. Jessica Kingsley: London. Camic, P. M., Baker, E. L., & Tischler, V. (2015). Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers. The Gerontologist Vol. 00-00, 1-10. Chatterjee, H., & Noble, N. (2013). Museums, Health and Wellbeing. Farnham: Ashgate Publishing Limited. Department of Health. (2009). Living Well with Dementia: A National Dementia Strategy. London: The Stationary Office. Department of Health. (2012). Prime Minister’s challenge on dementia: Delivering major mprovements in dementia care and research by 2015. Goulding, A. (2013). A critical comparison of methods for evaluating Arts and Dementia programmes. Journal of Applied Arts and Health, 4(2), 133-149. Kinney, J. M., & Rentz, C. (2005). A Observed wellbeing among individuals with dementia: Memories in the making, an art program, versus other structured activity. American Journal of Alzheimer’s Disease and Other Dementias, 20, 220–227. Lynch, K., et. al. (2009). Affective Equality. Love, Care and Injustice. London: Plagrave Macmillan. MacPhersona, S., Birdab, M., Andersonab, K., Davisa, T., & Blair, A. (2009). An Art Gallery Access Programme for people with dementia: ‘You do it for the moment’. Ageing and Mental Health Vol. 13-5, 744–752. Musella, O. et. al. (2009). Visual art improves communication and behaviour of AD patients. New trends in alzheimer and parkinson related disorders: ADPD, 15-20. Rosenberg, F. (2009). The MoMA Alzheimer's Project: Programming and resources for making art accessible to people with Alzheimer's disease and their caregivers. Arts & Health, 1:1, 93-97. Schulz, R., & Martire, L. M. (2004). Family caregiving or persons with dementia: prevalence, health effects and support strategies. The American Journal of Geriatric Psychiatry, 12, 240–249. Wilson, K., & Grindrod, L. (2013). An evaluation of House of Memories dementia training programme: Northern Model. Liverpool: National Museums Liverpool. Wilson, K., & Whelan, G. (2014). An evaluation of House of Memories dementia training programme: Midlands Model. Liverpool: National Museums Liverpool. Windle, G., et. al. (2014). Understanding the Impact of Visual Arts Interventions for People Living with Dementia: A realist review protocol. Systematic Reviews 3:91, 1-7. Young, R., Camic, P., & Tischler, V. (2015). The Impact of Community-based Arts and Health Interventions on Cognition in People with Dementia: A systematic literature review. Aging & Mental Health Vol. 20, No. 4, 337-351.

Author Information

Rafaela Ganga (presenting / submitting)

Institute of Cultural Capital

Liverpool

Kerry Wilson

Institute of Cultural Capital, United Kingdom

Gayle Whelan