Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-24T03:14:02.682Z Has data issue: false hasContentIssue false
  • English
  • Français

Older Carers and Carers of People with Dementia: Improving and Developing Effective Support

Published online by Cambridge University Press:  14 December 2020

Mary Larkin ,
Melanie Henwood  and
Alisoun Milne
Mary Larkin
Affiliation:
Faculty of Wellbeing, Education and Language Studies, The Open University E-mail: [email protected]
Melanie Henwood
Affiliation:
Melanie Henwood Associates E-mail: [email protected]
Alisoun Milne
Affiliation:
School of Social Policy, Sociology and Social Research, University of Kent E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The policy drive to support carers is a longstanding national and international priority. Research about the design and delivery of support for carers is critical to the underpinning evidence base. Through a timely exploration of a third sector perspective, the UK-based study discussed in this article provides insights into approaches to, and the commissioning of, support for older carers and carers of people with dementia. The study highlights the importance of: embedding carers’ perspectives in service developments; the provision of both generic and targeted support which adopts a nuanced and tailored approach; titrating the delivery of information and advice at a pace to match carers’ needs; capturing quantitative and qualitative dimensions in service evaluation; and increased quantity and longevity of funding. Such insights not only complement existing research but are also generalisable to other countries at a similar stage in the development of carer support.

Keywords

Carer supportolder carerscarers of people with dementiathird sectorcommissioning
Type
Article
Information
Social Policy and Society , Volume 21 , Issue 2: THEMED SECTION: Policies and practices shaping long-term care: between an inclusivity ethos and service delivery realities , April 2022 , pp. 242 - 256
Copyright
© The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Age UK (2018) Why Call it Care When Nobody Cares?, London: Age UK.Google Scholar
Alzheimer’s Society (2019) Younger People with Dementia, https://www.alzheimers.org.uk/about-dementia/types-dementia/younger-people-with-dementia [accessed 05.11.2019].Google Scholar
Bengston, M. (2016) ‘How to plan and perform a qualitative study using content analysis’, Nursing Plus Open, 2, 8-14.Google Scholar
Bowey, L. and McLaughlin, A. (2007) ‘Older carers of adults with a learning disability confront the future: issues and preferences in planning’, British Journal of Social Work, 37, 1, 39-54.CrossRefGoogle Scholar
Bowling, A. (2014) Research Methods in Health, Maidenhead: OUP.Google Scholar
Bremer, P., Cabrera, E. and Leio-Kilpi, H. (2015) ‘Informal dementia care: consequences for caregivers’ health and health care use in 8 European countries’, Health Policy, 119, 11, 1459-71.CrossRefGoogle ScholarPubMed
Brimblecombe, N., Pickard, L., King, D. and Knapp, M. (2018) ‘Barriers to receipt of social care services for working carers and the people they care in times of austerity’, Journal of Social Policy, 47, 2, 215-33.CrossRefGoogle Scholar
Callaghan, L., Brookes, N. and Palmer, S. (2017) ‘Older people receiving family-based support in the community: a survey of quality of life among users of ‘Shared Lives’ in England’, Health and Social Care in the Community, 25, 5, 1655-66.CrossRefGoogle ScholarPubMed
Carers, Trust (2015) Caring About Older Carers Providing Support for People Caring Later in Life, London: Carers Trust.Google Scholar
Carers, Trust (2016) Retirement on Hold, London: Carers Trust.Google Scholar
Carers, Trust (2019) Key Facts about Carers and the People They Care For, London: Carers Trust.Google Scholar
Carers UK (2015) Caring into Later Life: The Growing Pressure on Older Carers, London: Carers UK.Google Scholar
Carers UK (2016) Half a Million Voices: Improving Support for BAME Carers, Half a Million Voices: Improving Support for BAME Carers, London: Carers UK.Google Scholar
Carers UK (2019) Carers at Breaking Point Making the Case for Carers’ Breaks in England, London: Carers UK.Google Scholar
Charlesworth, G., Shepstone, L., Wilson, E., Reynolds, S., Mugford, M., Price, D., Harvey, I. and Poland, F. (2008) ‘Befriending carers of people with dementia: randomised controlled trial’, British Medical Journal, 336, 7656, 1295-7.CrossRefGoogle ScholarPubMed
Clare, L., Woods, R. T., Moniz Cook, E. D., Orrell, M. and Spector, A. (2003) Cognitive Rehabilitation and Cognitive Training for Early-Stage Alzheimer’s Disease and Vascular Dementia. The Cochrane Collaboration, Hoboken, NJ: John Wiley and Sons.Google Scholar
Clare, L., Woods, R. T., Nelis, S. M., Martyr, A., Markova, I. S., Roth, I., Whitaker, C. J. and Morris, R. G. (2014) ‘Trajectories of quality of life in early-stage dementia: individual variations and predictors of change’, International Journal of Geriatric Psychiatry, 29, 616-23.CrossRefGoogle ScholarPubMed
Corden, A. and Hirst, M. (2011) ‘Partner care at the end-of-life: identity, language and characteristics’, Ageing and Society, 31, 2, 217-42.CrossRefGoogle Scholar
Department of Health (2014) The Mandate. A Mandate from the Government to NHS England: April 2014 to March 2015, London: Department of Health.Google Scholar
Department of Health and Social Care (2018) Carers Action Plan 2018-2020. Supporting Carers Today, London: Department of Health and Social Care.Google Scholar
Do, E. K., Cohen, S. A. and Brown, M. J. (2014) ‘Socioeconomic and demographic factors modify the association between informal caregiving and health in the sandwich generation’, BMC Public Health, 14, 1, 1-14.CrossRefGoogle ScholarPubMed
Galiatsatos, P., Gurley, A. and Hale, W. D. (2017) ‘Policy and advocacy for informal caregivers: how state policy influenced a community initiative’, Journal of Public Health Policy, 38, 4, 503–8.CrossRefGoogle ScholarPubMed
Grundy, E. and Henretta, J. C. (2006) ‘Between elderly parents and adult children : a new look at the intergenerational care provided by the ‘sandwich generation’’, Ageing and Society, 26, 5, 705-22.CrossRefGoogle Scholar
Health and Social Care Information Centre (2015) Personal Social Services Survey of Adult Carers in England, 2014-15, Health and Social Care Information Centre.Google Scholar
Henwood, M., Larkin, M. and Milne, A. (2017) Seeing the Wood for the Trees. Carer Related Research and Knowledge: A Scoping Review’, https://www.scie-socialcareonline.org.uk/seeing-the-wood-for-the-trees-carer-related-research-and-knowledge-a-scoping-review/r/a110f00000RCtCnAAL [accessed 05.11.2019].Google Scholar
Henwood, M., Larkin, M. and Milne, A. (2018) Exemplar Models and Support for Older Carers and Carers of People with Dementia: Informing Commissioning, NHS England.Google Scholar
HM Government (2014) Care Act 2014 Chapter 23, http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted [accessed 05.11.2019].Google Scholar
Hydén, L-C. and Nilsson, E. (2015) ‘Couples with dementia: positioning the ‘we’ ‘, Dementia, 1, 6, 716–733.CrossRefGoogle Scholar
Jones, S. M., Mioshi, E. and Killett, A. (2019) ‘Coping but not allowing the coping to be everything: resilience in informal dementia care’, Health and Social Care in the Community, 27, 4, 289-97.CrossRefGoogle Scholar
Larkin, M. and Milne, A. (2014) ‘Carer empowerment in the 21st century – a critical reflection’, Social Policy and Society, 13, 1, 25-38.CrossRefGoogle Scholar
Larkin, M., Henwood, M. and Milne, A. (2018) ‘Carer related research and knowledge: findings from a scoping review’, Health and Social Care in the Community, 27, 1, 55-67.CrossRefGoogle Scholar
Lavrakas, P. J. (2008) Encyclopedia of Survey Research Methods, Thousand Oaks, CA: Sage Publications.CrossRefGoogle Scholar
Lewis, J. and West, A. (2014) ‘Re-shaping social care services for older people in England’, Journal of Social Policy, 43, 1, 1–18.CrossRefGoogle Scholar
Lockeridge, S. and Simpson, J. (2013) ‘The experience of caring for a partner with young onset dementia: how younger carers cope’, Dementia: the International Journal of Social Research and Practice, 12, 5, 635-51.CrossRefGoogle ScholarPubMed
McGarry, J. and Arthur, A. (2001) ‘Informal caring in later life: a qualitative study of the experiences of older carers’, Journal of Advanced Nursing, 33, 2, 182-9.CrossRefGoogle Scholar
Milne, A. (2010) ‘The D word: reflections on the relationship between stigma and dementia’, Journal of Mental Health, 19, 227-33.CrossRefGoogle Scholar
Milne, A. and Larkin, M. (2015) ‘Knowledge generation about care-giving in the UK: a critical review of research paradigms’, Health and Social Care in the Community, 23, 1, 4–13.CrossRefGoogle ScholarPubMed
Moniz-Cook, E., Vernooij-Dassen, M., Woods, B., Orrell, M. and Network, I. (2011) ‘Psychosocial interventions in dementia care research: the INTERDEM manifesto’, Aging and Mental Health, 15, 3, 283–90.CrossRefGoogle ScholarPubMed
England, NHS (2014a) Five Year Forward View, London: NHS England.Google Scholar
England, NHS (2014b) NHS England’s Commitment to Carers, London: NHS England.Google Scholar
England, NHS (2017) Next Steps on the NHS Five Year Forward View, London: NHS England.Google Scholar
England, NHS (2019) The NHS Long Term Plan, London, NHS England.Google Scholar
Newbronner, L., Chamberlain, R., Borthwick, R., Baxter, M. and Glendinning, C. (2013) A Road Less Rocky – Supporting Carers of People with Dementia, London: Carers Trust.Google Scholar
Perkins, E. A. and Haley, W. E. (2013) ‘Emotional and tangible reciprocity in middle- and older-aged carers of adults with intellectual disabilities’, Journal of Policy and Practice in Intellectual Disabilities, 10, 4, 334-44.CrossRefGoogle Scholar
Pickard, L., Brimblecombe, N., King, D. and Knapp, M. (2018) ‘Replacement care for working carers? A longitudinal study in England, 2013–15’, Social Policy and Administration, 52, 3, 690-709.CrossRefGoogle Scholar
Pickard, L., King, D. and Knapp, M. (2015) ‘The ‘visibility’ of unpaid care in England’, Journal of Social Work, 16, 3, 1-20.Google ScholarPubMed
Pickard, S., Shaw, S. and Glendinning, C. (2000) ‘Health care professionals’ support for older carers’, Ageing and Society, 20, 6, 725-44.CrossRefGoogle Scholar
Rand, S. E., Malley, J. N., Netten, A. P. and Forder, J. E. (2015) ‘Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)’, Quality of Life Research, 24, 11, 2601–14.CrossRefGoogle Scholar
Richardson, A., Pedley, G., Pelone, F., Akhtar, F., Chang, J., Muleya, W. and Greenwood, N. (2016) ‘Psychosocial interventions for people with young onset dementia and their carers: a systematic review’, International Psychogeriatrics, 28, 9, 1441–54.CrossRefGoogle ScholarPubMed
Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M. C., Cherubini, A., Abate, G., Bartorelli, L., Bonaiuto, S., Capurso, A., Cucinotta, D., Gallucci, M., Giordano, M., Martorelli, M., Masaraki, G., Nieddu, A., Pettenati, C., Putzu, P., Tammaro, V. A., Tomassini, P. F., Vergani, C., Senin, U. and Mecocci, P. (2005) ‘Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study,’ International Journal of Geriatric Psychiatry, 20, 2, 168-74.CrossRefGoogle ScholarPubMed
Rokstad, A-M., McCabe, L., Robertson, J., Strandenæs, M., Tretteteig, S. and Vatne, S. (2019) ‘Day care for people with dementia: a qualitative study comparing experiences from Norway and Scotland’, Dementia,18, 4, 1393–409.CrossRefGoogle ScholarPubMed
Rosness, T. A., Mjorud, M. and Engedal, K. (2011) ‘Quality of life and depression in carers of patients with early onset dementia’, Aging and Mental Health, 15, 3, 299-306.CrossRefGoogle ScholarPubMed