Abstract
Whilst older people with intellectual and developmental disabilities (IDD) are not a new population, higher numbers are now enjoying a longer life expectancy. More than ever this creates an opportunity for collaboration that encompasses the needs of services, preferences of families and the wishes of people with IDD themselves. Forward planning and tackling difficult conversations within families between parents, the adult with IDD and their siblings should be viewed as a starting point for partnership with professionals or service providers. This chapter explores two approaches to developing increased partnership between families and services based on two unique studies in Scotland. Firstly, the evaluation of a life story project delivered by Down’s Syndrome Scotland demonstrates how families can start the process of planning ahead by looking back, and how life story work can be a tool for enabling difficult conversations such as bereavement, loss and change. Secondly, in order to develop a meaningful partnership greater onus is required on understanding the perspective of the person with IDD. Findings are discussed from a novel participatory photovoice study co-led by four researchers with IDD to determine their perception of dementia highlighting what they are looking for from families and professionals.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
Adult social care in the UK refers to a system of support designed to maintain and promote the independence and wellbeing of older people, people with IDD and informal carers. This can include provision of formal care services such as shared group homes or help in the home.
- 2.
Co-researchers were involved from the inception of the study prior to funding. One co-researcher had Down syndrome, three others had an unspecified intellectual disability. The age of co-researchers ranged from 31 to 56 including one female and three males.
References
Watchman K, Mattheys K. My life my story: evaluation of life story project. Stirling: University of Stirling; 2019. https://www.stir.ac.uk/research/hub/publication/1452534.
World Health Organisation. Aging and health. 2019. https://www.who.int/news-room/fact-sheets/detail/ageing-and-health Accessed 19 Sept 2019.
United Nations. World population aging [report]. https://www.un.org/en/development/desa/population/publications/pdf/ageing/WPA2015_Report.pdf. Accessed 19 Sept 2019.
McConkey R. Fair shares? Supporting families caring for adult persons with intellectual disabilities. J Intellect Disabil Res. 2005;49:600–12.
Finkelstein A, Tenenbaum A, Bachner YG. ‘I will never be old’: adults with DS and their parents talk about ageing-related challenges. Ageing Soc. 2019:1–20.
Foundation for people with learning disabilities. Thinking ahead: supporting families to plan for the future 2013. London: Mental Health Foundation.
Watchman K. Getting older and enjoying later life. In: Guerrero MI, Brown RI, editors. Living with Down syndrome: Independently published; 2019. p. 115–32.
Bigby C, Know M. ‘I want to see the queen’: experience of service use by ageing people with an intellectual disability. Aust Soc Work. 2009;62:216–31.
Williams V. Learning disability policy & practice. Hampshire: Palgrave Macmillan; 2013.
Ratti V, Hassiotis A, Crabtree J, Deb S, Gallagher P, Unwin G. The effectiveness of person-centred planning for people with intellectual disabilities: a systematic review. Res Dev Disabil. 2016;57:53–64.
Frost N. Professionalism partnership and joined up thinking—a research review of working with children and families. Devon: Research in Practice.
Baker TA, Wang CC. Photovoice: use of a participatory action research method to explore the chronic pain experience in older adults. Qual Health Res. 2006;16:1405–13.
Evans D, Robertson J, Candy A. Use of photovoice with people with younger onset dementia. Dementia. 2016;15:798–813.
Watchman K, Mattheys K, Doyle A, Boustead L, Rincones O. Revisiting Photovoice: perceptions of dementia among researchers with intellectual disability. Qual Health Res. 2020;30:1019–32. https://doi.org/10.1177/1049732319901127.
Overmars-Marx T, Thomése F, Moonen X. Photovoice in research involving people with intellectual disabilities: a guided photovoice approach as an alternative. J Appl Res Intellect Disabil. 2018;31:e92–e104.
Burke M, Arnold C, Owen A. Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellect Dev Disabil. 2018;56:90–100.
Wang C, Burris MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health Educ Behav. 1997;24:369–87.
Walton G, Schleien SJ, Brake LR, Trovato CC, Oakes T. Photovoice: a collaborative methodology giving voice to underserved populations seeking community inclusion. Ther Recreation J. 2012;46:168–78.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2021 Springer Nature Switzerland AG
About this chapter
Cite this chapter
Watchman, K. (2021). Families and Ageing: Working Towards a Positive Partnership with Services. In: Prasher, V.P., Davidson, P.W., Santos, F.H. (eds) Mental Health, Intellectual and Developmental Disabilities and the Ageing Process. Springer, Cham. https://doi.org/10.1007/978-3-030-56934-1_20
Download citation
DOI: https://doi.org/10.1007/978-3-030-56934-1_20
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-56933-4
Online ISBN: 978-3-030-56934-1
eBook Packages: MedicineMedicine (R0)