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Blurring and Bridging: The Role of Volunteers in Dementia Care within Homes and Communities

Published online by Cambridge University Press:  22 January 2020

VIKKI MCCALL
Affiliation:
Room 4S5, Colin Bell Building, University of Stirling, Stirling, FK9 4LA Tel: +44 (0) 1786 467698; email: vikki.mccall@stir.ac.uk; Twitter @vikki_mccall
LOUISE MCCABE
Affiliation:
Faculty of Social Sciences, University of Stirling
ALASDAIR RUTHERFORD
Affiliation:
Faculty of Social Sciences, University of Stirling
FEIFEI BU
Affiliation:
Faculty of Social Sciences, University of Stirling
MICHAEL WILSON
Affiliation:
Faculty of Social Sciences, University of Stirling
MIKE WOOLVIN
Affiliation:
Faculty of Social Sciences, University of Stirling

Abstract

Policy makers across the political spectrum have extolled the virtues of volunteering in achieving social policy aims. Yet little is known about the role that volunteering plays in addressing one of the significant challenges of an ageing population: the provision of care and support to people with dementia. We combine organisational survey data, secondary social survey data, and in-depth interviews with people with dementia, family carers and volunteers in order to better understand the context, role and challenges in which volunteers support people with dementia. Social policies connecting volunteering and dementia care in homes and communities often remain separate and disconnected and our paper draws on the concept of policy ‘assemblages’ to suggest that dementia care is a dynamic mixture of formal and informal volunteering activities that bridge and blur traditional policy boundaries. Linking home and community environments is a key motivation, benefit and outcome for volunteers, carers and those living with dementia. The paper calls to widen the definition and investigation of volunteering in social policy to include and support informal volunteering activity.

Type
Article
Copyright
© Cambridge University Press 2020

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References

Ahn, S., Phillips, K. L., Smith, M. L. and Ory, M. G. (2011), ‘Correlates of volunteering among aging Texans: the roles of health indicators, spirituality, and social engagement’. Maturitas, 69, 3, 257262.CrossRefGoogle ScholarPubMed
Alzheimer’s Society (2011), ‘The later stages of dementia’, Factsheet 417. London: Alzheimer’s Society.Google Scholar
Alzheimer’s Society (2014), ‘Dementia UK Update’, London: Alzheimer’s SocietyGoogle Scholar
Anton, C.E. and Lawrence, C. (2014) ‘Home is where the heart is: The effect of place of residence on place attachment and community participation’, Journal of Environmental Psychology, 40, 451461.CrossRefGoogle Scholar
Bartels, K. P. R., Cozzi, G. and Mantovan, N. (2013), 'The Big Society,' Public Expenditure, and Volunteering’. Public Administration Review, 73, 2, 340351.CrossRefGoogle Scholar
Beeson, R. A. (2003), ‘Loneliness and depression in spousal caregivers of those with Alzheimer’s disease versus non-caregiving spouses’. Archives of Psychiatric Nursing,17, 3, :135143.CrossRefGoogle ScholarPubMed
Blunt, A. and Dowling, R. (2006), Home, London: Taylor and Francis 10.4324/9780203401354CrossRefGoogle Scholar
Brown, M., Tolson, S., Ritchie, L., Sharp, B., Syme, K., James, K. and Tolson, D. (2017), Being Home. Housing and Dementia in Scotland. Lanarkshire: University of the West ScotlandGoogle Scholar
Bottery, S., Varrow, M., Thorlby, R. and Wellings, D. (2018) ‘A fork in the road: Next steps for social care funding reform, The costs of social care funding options, public attitudes to them – and the implications for policy reform’, The Health Foundation and The King’s Fund, https://www.health.org.uk/publications/a-fork-in-the-road-next-steps-for-social-care-funding-reform [accessed 25.03.19]Google Scholar
Bourassa, K. J.Memel, M.Woolverton, C. and Sbarra, D. A (2017), ‘Social participation predicts cognitive functioning in aging adults over time: comparisons with physical health, depression, and physical activity’, Aging & Mental Health, 21, 2, 133146.10.1080/13607863.2015.1081152CrossRefGoogle ScholarPubMed
Bradford, S., Hills, L. and Johnston, C. (2016), ‘Unintended volunteers: the volunteering pathways of working class young people in community sport’, International Journal of Sport Policy and Politics, 8, 2, 231244.CrossRefGoogle Scholar
Brooks, A., Farquharson, L., Burnell, K. and Charlesworth, G. (2014), ‘A Narrative Enquiry of Experienced Family Carers of People with Dementia Volunteering in a Carer Supporter Programme’, Journal of Community and Applied Social Psychology, 24, 491502.10.1002/casp.2188CrossRefGoogle Scholar
Caputo, R. K. (2009), ‘Religious Capital and Intergenerational Transmission of Volunteering as Correlates of Civic Engagement’, Nonprofit & Voluntary Sector Quarterly, 38, 6, 9831002.CrossRefGoogle Scholar
Charlesworth, G., Sinclair, J. B., Brooks, A., Sullivan, T., Ahmad, S. and Poland, F. (2017), ‘The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia’. Health & social care in the community, 25, 2, 548558.CrossRefGoogle ScholarPubMed
Chung, J. C. C. (2009), ‘An intergenerational reminiscence programme for older adults with early dementia and youth volunteers: values and challenges’, Scandinavian Journal of Caring Sciences, 23, 2, 259264CrossRefGoogle ScholarPubMed
Cristoforetti, A., Gennai, F. and Rodeschini, G. (2011) “Home sweet home: The emotional construction of places”, Journal of Aging Studies, 25,225232CrossRefGoogle Scholar
Damianakis, T., Wagner, L.M., Bernstein, S. and Marziali, E. (2007), ‘Volunteers’ Experiences Visiting the Cognitively Impaired in Nursing Homes: A Friendly Visiting Program’, Canadian Journal on Aging, 26, 04.10.3138/cja.26.4.343CrossRefGoogle ScholarPubMed
Darley, S. (2018), ‘Learning as a process of personal-social transformation: volunteering activity in health and social care charities’. Mind, Culture & Activity, 25(3), 199215CrossRefGoogle Scholar
Department of Health (2009), ‘Living Well with Dementia: a national dementia strategy’, https://www.gov.uk/government/publications/living-well-with-dementia-a-national-dementia-strategy, [accessed 15.06.17]Google Scholar
Department of Health (2015), ‘Prime Minister’s challenge on dementia 2020’, https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020, [accessed 15.06.17]Google Scholar
Flores, R. (2014), ‘From personal troubles to public compassion: charity shop volunteering as a practice of care’. Sociological Review, 62, 2, 383399.CrossRefGoogle Scholar
Gronlund, H., Holmes, K., Kang, C., Cnaan, R. A., Handy, F., Brudney, J. L. and Zrinscak, S. (2011), ‘Cultural Values and Volunteering: A Cross-cultural Comparison of Students’ Motivation to Volunteer in 13 Countries’, Journal of Academic Ethics, 9, 2, 87106.10.1007/s10805-011-9131-6CrossRefGoogle Scholar
Gorur, R. (2011), ‘Policy as Assemblage’, European Educational Research Journal, 10, 4, 611622.CrossRefGoogle Scholar
Hadjri, K., Faith, V. and McManus, M. (2012), ‘Designing dementia nursing and residential care homes’, Journal of Integrated Care, 20, 5, 322340.CrossRefGoogle Scholar
Hardy, R. (2014), ‘Norman Lamb: older volunteers could ease pressure on social care’, https://www.theguardian.com/society/2014/oct/08/norman-lamb-older-volunteers-pressure-social-care, [accessed 15.06.18]Google Scholar
Harding, A., Parker, J., Hean, S, and Hemingway, A. (2018), ‘Supply-side review of the UK specialist housing market and why it is failing older people’, Housing, Care and Support, 21, 2, 415010.1108/HCS-05-2018-0006CrossRefGoogle Scholar
Hancock, G. A., Woods, B., Challis, D. and Orrell, M. (2006), ‘The needs of older people with dementia in residential care’, International Journal of Geriatric Psychiatry, 21(1): 4349CrossRefGoogle ScholarPubMed
Henrikson, L.A., Koch-Nielson, I.K. and Rosdahl, D. (2008), ‘Formal and Informal volunteering in a Nordic context: The case of Denmark’, Journal of civil society, 4, 3, 193209.CrossRefGoogle Scholar
Hoad, P. (2002), ‘Drawing the line: the boundaries of volunteering in the community care of older people’, Health and Social Care in the Community, 10, 4, 239246.CrossRefGoogle Scholar
Hustinx, L., Handy, F., Cnaan, R. A., Brudney, J. L., Pessi, A. B., & Yamauchi, N. (2010), ‘Social and Cultural Origins of Motivations to Volunteer A Comparison of University Students in Six Countries’. International Sociology, 25, 3, 349382.CrossRefGoogle Scholar
van Hoof, J.Kort, H.S. and van Waade, H. (2009) ‘Housing and care for older adults with dementia: a European perspective’, Journal of Housing and the Built Environment, 24, 369390CrossRefGoogle Scholar
Jones, K.S. (2006), ‘Giving and Volunteering as Distinct Forms of Civic Engagement: The Role of Community Integration and Personal Resources in Formal Helping’, Nonprofit and Voluntary Sector Quarterly, 35, 2, 249266.CrossRefGoogle Scholar
Kahana, E., Bhatta, T., Lovegreen, L. D., Kahana, B. and Midlarsky, E. (2013), ‘Altruism, helping, and volunteering: pathways to well-being in late life’. Journal of aging and health, 25, 1, 159187.CrossRefGoogle ScholarPubMed
Kitwood, T., Buckland, S. and Petre, T. (1995), Brighter futures A report on research into provision for persons with dementia in residential homes, nursing homes and sheltered housing, Oxford: Anchor housing AssociationGoogle Scholar
Kitwood, T. (1997), Dementia reconsidered: the person comes first. Philadelphia, PA: Open University Press.Google Scholar
Leggett, A. N., Zarit, S., Taylor, A. and Galvin, J. E. (2010), ‘Stress and burden among caregivers of patients with Lewy body dementia’. Gerontologist 51, 1,7685.10.1093/geront/gnq055CrossRefGoogle ScholarPubMed
Marcheschi, E., Laike, T., Brunt, D. and Hansson, L (2015) “Quality of life and place attachment among people with severe mental illnessJournal of Environmental Psychology, 41, 145154CrossRefGoogle Scholar
Morris, S., Wilmot, A., Hill, M., Ockenden, N. and Payne, S. (2012), ‘A narrative literature review of the contribution of volunteers in end-of-life care services’, Palliative Medicine, 24Google ScholarPubMed
Morris, S., Payne, S., Ockenden, N, and Hill, M. (2017), ‘Hospice volunteers: bridging the gap to the community?Health and Social Care in the Community, 25, 6, 17041713.10.1111/hsc.12232CrossRefGoogle ScholarPubMed
Naylor, C., Mundle, C., Weaks, L. and Buck, D. (2013), Volunteering in health and care: Securing a sustainable future, London: Kings FundGoogle Scholar
National Development Team for Inclusion (2013) Circles of Support for People with Dementia – A Summary of Learning from the Project to Date, NDTi Insights, No. 18, https://www.ndti.org.uk/uploads/files/Insights_18_-_Circles_of_support.pdf [accessed 22.03.19]Google Scholar
Newman, J. (2002), ‘Putting the ‘Policy’ into Social Policy’, Social Policy & Society, 1, 4, 347354.10.1017/S1474746402004098CrossRefGoogle Scholar
Newman, J. (2008), Policy Assemblages, Paper Presented at University of Stirling Key Word Seminar on GovernanceGoogle Scholar
Newman, J. (2005) ‘Modernising Adult Social Care: Researching the Impact of Reform on Service UsersJournal of Integrated Care, 13, 6, 1316.CrossRefGoogle Scholar
Newman, J. (2012), ‘Making, contesting and governing the local: women’s labour and the local state’. Local Economy, 27, 8, 846858.CrossRefGoogle Scholar
Newman, J. (2014), ‘Landscapes of antagonism: Local governance, neoliberalism and austerity’. Urban Studies, 51, 15, 32903305.CrossRefGoogle Scholar
Newman, J. (2017), ‘The Politics of Expertise: Neoliberalism, Governance and the practice of Politics, in Higgins, V. and Larner, W. (eds) Assembling Neoliberalism, Chapter 5Google Scholar
Newman, J. and Clarke, J. (2009), Publics, politics and power: Remaking the public in public services. London: Sage.Google Scholar
Newman, J. and Vidler, E. (2006) ‘Discriminating Customers, Responsible Patients, Empowered Users: Consumerism and the Modernisation of Health Care’, Journal of Social Policy, 35, 2, 193209.CrossRefGoogle Scholar
Paylor, J. (2011), Volunteering and health: evidence of impact and implications for policy and practice: A literature review. London: IVR.Google Scholar
Ritchie, J., Lewis, J., Nicholls, C.M. and Ormston, R (2013), Qualitative Research Practice, London: SageGoogle Scholar
Roin, A. (2015) ‘The multifaceted notion of home: Exploring the meaning of home among elderly people living in the Faroe Islands’, Journal of Rural Studies, 39, 2231.CrossRefGoogle Scholar
Rutherford, A.C. and Bowes, A (2014) ‘Networks of Informal Caring: a Mixed-Methods ApproachCanadian Journal on Aging, 33, 4, 473487.CrossRefGoogle ScholarPubMed
Rutherford, A., Bu, F., Dawson, A. and McCall, V. (2019) ‘Literature Review to Inform the Development of Scotland’s Volunteering Outcomes Framework’, Edinburgh: Scottish Government https://www.gov.scot/publications/research-summary-literature-review-scotlands-volunteering-outcomes-framework/ [accessed 20.05.19]Google Scholar
Sabir, M., Pillemer, K., Suitor, J., Patterson, M (2003), ‘Predictors of successful relationships in a peer support program for Alzheimer’s care-givers’. American Journal of Alzheimer’s Disease, 18, 2, 115122.CrossRefGoogle Scholar
Scottish Government (2004), ‘Volunteering Strategy’, https://www2.gov.scot/Publications/2004/05/19348/36993, [accessed 19.12.18]Google Scholar
Scottish Government (2010), ‘Scotland’s Dementia Strategy’, Edinburgh: Scottish Government,Google Scholar
Scottish Government (2011a), ‘Scotland’s Dementia Strategy One Year On’, Edinburgh: Scottish Government, Available at: http://www.gov.scot/resource/doc/350341/0117259.pdf [Accessed 01.07.15].Google Scholar
Scottish Government (2011b), ‘Age, Home and Community: A Strategy for Housing for Scotland’s Older People: 2012–2021’, Edinburgh: Scottish Government (revised in 2018)Google Scholar
Scottish Government (2018a), ‘Scotland’s National Performance Framework’, https://www.gov.scot/publications/delivering-today-investing-tomorrow-governments-programme-scotland-2018-19/pages/5/ [accessed 10.12.18]Google Scholar
Scottish Government (2018b) Transforming social care: Scotland’s progress towards implementing self-directed support 2011-2018, Available at: https://www.gov.scot/publications/transforming-social-care-scotlands-progress-towards-implementing-self-directed-support/pages/7/ [Accessed 25/03/19]Google Scholar
Smith, R. and Greenwood, N. (2014), The Impact of Volunteer Mentoring Schemes on Carers of People with Dementia and Volunteer. A Systematic Review, American Journal of Alzheimer’s Disease & Other Dementias, 29, 1, 817.CrossRefGoogle ScholarPubMed
Soaita, A.M. and McKee, K. (2019) ‘Assembling a ‘kind of’ home in the UK private renting sector’, Geoforum, in Press, [Available online: https://doi.org/10.1016/j.geoforum.2019.04.018]CrossRefGoogle Scholar
Stewart, M., Barnfather, A., Neufeld, A., Warren, S., Letourneau, N. and Liu, L (2006), ‘Accessible support for family caregivers of seniors with chronic conditions: from isolation to inclusion’, Canadian Journal on Aging, 25, 2, 179192.CrossRefGoogle ScholarPubMed
Tang, F. (2016), ‘Retirement Patterns and Their Relationship to Volunteering’. Nonprofit and Voluntary Sector Quarterly, 45, 5, 910930.CrossRefGoogle Scholar
Weyerer, S., Shaufele, M. and Hendlmeier, I. (2010), ‘Evaluation of special and traditional dementia care in nursing homes: results from a cross-sectional study in Germany’, Int Journal of Geriatric Psychiatry, 25, 11591167CrossRefGoogle ScholarPubMed
Wiersma, E. and Pedlar, A. (2008), ‘The Nature of Relationships in Alternative Dementia Care Environments’, Canadian Journal on Aging, 27, 1, 101108.CrossRefGoogle ScholarPubMed
Williams, C. (2003), ‘Developing voluntary activity: Some policy issues arising from the 2001 Home Office citizenship survey’. Social Policy and Society 2, 4, 285294.CrossRefGoogle Scholar
Whittall, D., Lee, S. and O’Connor, M. (2016), ‘Factors affecting rural volunteering in palliative care – an integrated review’, Australian Journal of Rural Health, 24, 6, 350356.10.1111/ajr.12313CrossRefGoogle ScholarPubMed
World Health Organisation (2017) ‘10 facts on dementia’ https://www.who.int/features/factfiles/dementia/en/ [accessed 18.09.18]Google Scholar