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
Skingley, A., Billam, D., Clarke, D., Hodges, R., Jobson, I., Jobson, R., Moore, J., Vella-Burrows, T., Vickers, P., Walker, J. and West, H. 2020. 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: The International Journal for Social Research and Practice. 20 (4), pp. 1319-1335. https://doi.org/10.1177/1471301220933121
|Authors||Skingley, A., Billam, D., Clarke, D., Hodges, R., Jobson, I., Jobson, R., Moore, J., Vella-Burrows, T., Vickers, P., Walker, J. and West, H.|
|Keywords||Carers; Creative; Dementia; Music; Relationships|
|Journal||Dementia: The International Journal for Social Research and Practice|
|Journal citation||20 (4), pp. 1319-1335|
|Digital Object Identifier (DOI)||https://doi.org/10.1177/1471301220933121|
|Online||10 Jun 2020|
|Publication process dates|
|Accepted||14 May 2020|
|Deposited||15 Jun 2020|
|Accepted author manuscript|
Aoun, S., Toye, C., Slatyer, S., Robinson, A. & Beattie, W. (2018). A person-centred approach to family carer needs assessment and support in dementia community care in Western Australia. Health & Social Care in the Community 26, 578-586.
Baker, F., Grocke, D. & Pachana, N. (2012). Connecting through music: a study of a spousal caregiver-directed music intervention designed to prolong fulfilling relationships in couples where one person has dementia. Australian Journal of Music Therapy 23, 4-19.
Barnes, M., Henwood, F., Smith, N. & Waller, D (2013). External evaluation of the Alzheimer’s Society Carer Information & Support Programme (CrISP). University of Brighton. Available at:
Bowell, S. & Bamford, S. (2018). ‘What would life be – without a song or a dance what are we?’ A report from the Commission on Dementia and Music. London, UK; ILC-UK. Available at:
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77-101.
Breakwell, G., Hammond, S., Fife-Shaw, C. & Smith, J. (Eds) (2006). Research methods in psychology, 3rd edition. London, UK: Sage.
Camic, C., Tischler, V. & Pearman, H. (2014). Viewing and making art together: a multi-session art-gallery-based intervention for people with dementia and their carers. Aging and Mental Health 18, 161-168
Camic, P., Williams, C. & Meeten, F. (2013). Does a ‘singing together group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study. Dementia 12, 157-176.
Cann, A. (2004). Rated importance of personal qualities across four relationships. Journal of Social Psychology 144, 3, 322-334.
Carers Trust (2013). A road less rocky: supporting carers of people with dementia. Carers Trust/SPRU. Available at: https://carers.org/resources/all-resources/84-a-road-less-rocky-a-su...
Charmaz, K. (2006). Constructing grounded theory: a practical guide through qualitative analysis. London: Sage
Corbin, J. & Strauss, S.A. (1990). Grounded theory research; procedures, canons and evaluative criteria. Qualitative Sociology 13, 1, 3-21.
Dunbar, N. (2004). Theory in progress: dyadic power theory: constructing a communication-based theory of relational power. Journal of Family Communication 4, 3-4, 235-248.
Featherstonhaugh, D., Rayner, J-A & Tarzia, L (2019). Hanging on to some autonomy in decision-making: how do spouse carers support this? Dementia 18, 1219-1236.
Gordon-Nesbitt, R. & Howarth, A. (2019) The arts and social determinants of health: findings from an enquiry conducted by the United Kingdom All-Party Parliamentary Group on Arts, Health and Wellbeing. Arts and Health DOI: 10.1080/17533015.2019.1567563
G8UK (2013). Dementia Summit Declaration (p.1). Available online at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/265869/2901668_G8_DementiaSummitDeclaration_acc.pdf
Hellstrom, I., Nolan, M. & Lundh, U. (2005). ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia 4 (1) 7-22.
Jeong, J. (2019). The affective creativity of a couple in dementia care. Culture, Medicine and Psychiatry. Available online at: https://link.springer.com/article/10.1007/s11013-019-09662-5
Lacey, A. & Luff, D. (2009). Qualitative data analysis. Nottingham & Sheffield, UK: NIHR Research Design Service for the East Midlands/Yorkshire and the Humber.
La Fontaine, J., Jutla, K., Read, K, Brooker, D. & Evans, S. (2016). The experiences, needs and outcomes for carers of people with dementia: literature review. London, UK: RSAS. Available at: https://dementiacarers.org.uk/wp-content/uploads/2018/11/RSAS-ADS-Ex...
Moral-Fernández , L., Frías-Osuna, A., Moreno-Cámara, S., Palomino-Moral, P.A. & Del-Pino-Casado, R. (2018). The start of caring for an elderly dependent family member: a qualitative metasynthesis. BMC Geriatrics 18:22. Doi.org/10.1186/s12877-018-0922-0. Available at:
Milne, A., Guss, R. & Russ, A. (2014). Psycho-educational support for relatives of people with a recent diagnosis of mild to moderate dementia: an evaluation of a ‘Course for Carers’. Dementia 13, 768-787.
NHS (2019). The NHS long term plan. Available at: https://www.england.nhs.uk/long-term-plan/
O’Rourke, N., Claxton, A., Kupferschmidt, A., Smith, J. & Beattie, B. (2011) Marital idealization as an enduring buffer to distress among spouses of persons with Alzheimer disease. Journal of Social and Personal Relationships 28, 117-133.
Osman, S., Tischler, V. & Schneider, J. (2016). ‘Singing for the Brain’: a qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers. Dementia 15, 1326-1339
Riley, G., Evans, L & Oyebode. J. (2018). Relationship continuity and emotional well-being in spouses of people with dementia. Aging and Mental Health 22, 299-305.
Robinson, G (2019) Supporting carers of people with dementia. Nursing Standard 34, 1, 44-49.
Rossetto, K.R. (2014). Qualitative research interviews: assessing the therapeutic value and challenges. Journal of Social and Personal Relationships 31(4) 482-489. Doi: 10.1177/0265407514522892.
Stirling, C., Andrews, S., Croft, T., Vickers, J, Turner, P.& Robinson, A. (2010). Measuring dementia carers’ unmet need for services – an exploratory mixed method study. BMC Health Services Research 10:122. Available at:
Tatangelo, G., McCabe, M., Macleod, A. & You, E. (2018). ‘I just don’t focus on my needs’. The unmet health needs of partner and offspring caregivers of people with dementia. International Journal of Nursing Studies 77, 8-14.
Traynor, M. (2015). Focus group research. Nursing Standard 29, 37, 44-48.
Twiddy, H., Hanna, J. & Haynes, L. (2017). Growing pains: understanding the needs of emerging adults with chronic pain. British Journal of Pain 113, 108-118.
Unadkat, S., Camic, P. & Vella-Burrows, T. (2017). Understanding the experiences of group singing for couples where one partner has a diagnosis of dementia. The Gerontologist 57, 469-478.
Vella-Burrows, T. (2017). Carers Create 2015-2017: Report on activities and evaluation of effect. Canterbury Christ Church University. Available at: http://www.artshealthresources.org.uk/docs/carers-create-2015-2017-r...
Wittenberg, R., Hu, B., Barraza-Araiza, L. & Rehill, A. (2019). Projections of Older People Living with Dementia and Costs of Dementia Care in the United Kingdom, 2019–2040, Care Policy and Evaluation Centre Working Paper 5. Available at:
World Health Organization (WHO) (2017). iSupport: online training programme for carers of people with dementia. Available at:
Wirihana, L., Welch, A., Wiliamson, M, Christensen, M., Bakon, S., Craft, J. (2018). Using Colaizzi’s method of data analysis to explore the experiences of nurse academics teaching on satellite campuses. Nurse Researcher 25, 4, 30-34.
Yin, R. (2009). Case study research: design and methods 4th ed. Los Angeles, USA: Sage
2views this month
0downloads this month