Intellectual disability nursing throughout the lifespan

Book chapter


Marsden, D., Doyle, C., Carey, E. and Ridley, J. 2023. Intellectual disability nursing throughout the lifespan. in: Learning and Intellectual Disability Nursing Practice Routledge, Taylor and Francis.
AuthorsMarsden, D., Doyle, C., Carey, E. and Ridley, J.
Abstract

In this chapter, students of nursing will explore the nature of learning disabilities throughout the lifespan and its relationship to learning disability nursing. This will be contextualized within the Nursing and Midwifery Council for the United Kingdom (2018) and Nursing and Midwifery Board of Ireland (2016) standards and requirements for competence.
A learning/intellectual disability is a lifelong condition, and it is therefore not unusual for learning disability nurses to work with, or offer support to, people with learning disabilities throughout their lifespans, quite literally from the cradle to the grave. Holistic approaches in learning disability nursing seek to promote interventions that adopt a whole-person-centred approach. This means providing nursing that responds to the various dimensions of being, and these typically include attention to the physical, emotional, social, economic, and spiritual needs of people.

KeywordsLearning Disability; Intellectual Disabilities; Lifespan; Nursing
Year2023
Book titleLearning and Intellectual Disability Nursing Practice
Book authorsKay Mafuba
PublisherRoutledge, Taylor and Francis
Output statusIn press
Edition2nd
ISBN9781032282763
Publication dates
Print28 Mar 2023
Publication process dates
Deposited05 Jan 2023
References

Abbott, D., and Howarth, J. 2007. Still off-limits? Staff view on supporting gay, lesbian and bisexual people with intellectual disabilities to develop sexual and intimate relationships. Journal of Applied Research in Intellectual Disabilities, 20(2):116-126.
Alcedo Rodríguez, M. Á., Cristóbal Fernández, L., Gomez Sanchez, L. E., and Arias González, V. B. 2018. Evaluating the characteristics of the grieving process in people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 31(6): 999-1007.
Allington-Smith, P. 2006. Mental health of children with learning disabilities. Advances in Psychiatric Treatment, 12:130-140.
Ammerman, R.T., Hersen, M., van Hasselt, V.B., Lubetsky, M.J., and Sieck, W.R. 1994.
Maltreatment in psychiatrically hospitalized children and adolescents with developmental disabilities: Prevalence and correlates. Journal of the American Academy of Child & Adolescent Psychiatry, 33(4) 567-576.
Arvio, M., and Bjelogrlic‐Laakso, N. 2021. Screening of dementia indicating signs in adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 34(6): 1463-1467.
Association for Children’s Palliative Care. 2007. Integrated Multi-Agency Care Pathways for Children with Life-Threatening and Life Limiting Conditions. Bristol: Association for Children’s Palliative Care.
Atchley, R. C. 1989. A continuity theory of normal aging. The Gerontologist, 29(2), 183–190. https://doi. org/10.1093/geront/29.2.183.
Axmon, A., Höglund, P., and Ahlström, G. 2017. September. Chronic respiratory disorders and their treatment among older people with intellectual disability and/or autism spectrum disorder in comparison with the general population. In Healthcare (Vol. 5, No. 3, p. 40). Multidisciplinary Digital Publishing Institute.
Axmon, A., Björkman, M., and Ahlström, G. 2019. Hospital readmissions among older people with intellectual disability in comparison with the general population. Journal of Intellectual Disability Research, 63(6): 593-602.
Axmon A., Ahlstro¨m, G. and Ho¨glund P. 2017. Prevalence and treatment of diabetes mellitus and hypertension among older adults with intellectual disability in comparison with the general population. BMC Geriatrics, 17: 272-283. DOI: 10.1186/s12877-017- 0658-2.
Azar, S.T., Stevenson, M.T., and Johnson, D.R. 2012. Intellectual disabilities and neglectful parenting: Preliminary findings on the role of cognition in parenting risk. Journal of Mental Health Research in Intellectual Disabilities, 5(2):94-129.
Bach, M. and Kerzner, L. 2010. A new paradigm for protecting autonomy and the right to legal capacity, http://www.lco-cdo.org/disabilities/bach-kerzner.pdf.
Bai, X., Ho, D.W., Fung, K., Tang, L., He, M., Young, K. W., ... and Kwok, T. 2014. Effectiveness of a life story work program on older adults with intellectual disabilities. Clinical Interventions in Aging, 9: 1865.
Baltes, P.B., and Baltes, M.M. 1990. Psychological perspectives on successful aging: The model of selective optimization with compensation. In: Baltes P.B. and Baltes M.M., Eds., Successful Aging. Perspectives from the Behavioral Sciences, Cambridge University Press, Cambridge. DOI: 10.1017/CBO9780511665684.003.
Balic, M. 2020. Intellectual disability, exercise and aging: the IDEA study: study protocol for a randomized controlled trial. BMC public health, 20(1): 1-16.
Balogh, R., Lin, E., Dobranowski, K., Selick, A., Wilton, A. S., & Lunsky, Y. (2018). All-cause, 30-day readmissions among persons with intellectual and developmental disabilities and mental illness. Psychiatric Services, 69(3), 353–357. https://doi.org/10.1176/appi.ps.201600534
Barr, O. and Millar, R. 2003. Parents of children with intellectual disabilities: Their expectations and experience of genetic counseling. Journal of Applied Research in Intellectual Disabilities, 16(3):189.
.
Beard, JR., Officer, A., de Carvalho, IA., Sadana, R., Pot, AM., Jean-Pierre Michel, JP., Peter Lloyd-Sherlock, P., Epping-Jordan, JE., Peeters, G., Mahanani, WR., Thiyagarajan, JA. and Somnath Chatterji, C. 2016. The World report on ageing and health: a policy framework for healthy ageing, The Lancet, 387, 10033, 2145-2154. DOI: https://doi.org/10.1016/S0140-6736(15)00516-4.
Beard, J. R., Cerdá, M., Blaney, S., Ahern, J., Vlahov, D., and Galea, S. 2009. Neighborhood characteristics and change in depressive symptoms among older residents of New York City. American Journal of Public Health, 99(7): 1308–1314. DOI: https://doi.org/10.2105/AJPH.2007.125104.
Bermingham, B. (2021) Midlife Women Rock A menopause story for a new generation. Oral Kelly Publishing. ISBN 978-1-914225-84-0.
Bigby, C. (2021) Retirement for People with Intellectual Disability, Policy, Pitfalls, and Promising Practices In Putnam, M. (2021). Handbook on Ageing with Disability (C. Bigby, Ed.) (1st ed.). Routledge. DOI: https://doi-org.proxy.lib.ul.ie/10.4324/9780429465352 Chapter 21|14 pages.
Bibby, R. 2013. ‘I hope he goes first’: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues? British Journal of Learning Disabilities, 41(2):94-105.
Bigby, C. 2008. Beset by obstacles: A review of Australian policy development to support ageing in place for people with intellectual disability. Journal of Intellectual and Developmental Disability, 33(1):76-86.
Bjorksten J. 1968. The crosslinkage theory of aging. J Am Geriatr Soc, 16: 408-427.
Harman, D. 1956. Aging: a theory based on free radical and radiation chemistry. J Gerontol, 11: 298- 300.
Blackman, N.J. 2002. Grief and intellectual disability: A systemic approach. Journal of Gerontological Social Work, 38(1/2):253-263.
Blackman, N. 2008. The development of an assessment tool for the bereavement needs of people with learning disabilities. British Journal of Learning Disabilities, 36: 165–170. DOI: https://doi. org/10.1111/j.1468-3156.2008.00514.x .
Blackman, N. 2013. The Use of Psychotherapy in Supporting People with Intellectual Disabilities who Have Experienced Bereavement (Doctoral Dissertation). Retrieved from https://uhra.herts.ac.uk/bitstream/ handle/2299/9801/07165752%20Blackman%20Noelle%20-%20 final%20PhD%20submission.pdf?sequence=1.
Blackman, N. 2016. Supporting people with learning disabilities through a bereavement. Tizard Learning Disability Review, 21: 199- 202. DOI: https://doi.org/10.1108/TLDR-07-2016-0020.
Bloomquist, K.B., Brown, G., Peerson, A., and Presler, E.P. 1998. Transitioning to independence: Challenges for young people with disabilities and their caregivers. Orthopaedic Nursing, May/June, pp. 27-35.
Bonell-Pascual, E., Huline, S., Hollins, S., Esterhuyzen, A., Sedgwick, P., Abdelnoor, A., and Hubert, J. 1999. Bereavement and grief in adults with learning disabilities: A follow-up study. British Journal of Psychiatry, 175, 348–350. DOI: https://doi.org/10.1192/bjp.175.4.348.
Bond, L., Carroll, R., Mulryan, N., O'Dwyer, M., O'Connell, J., Monaghan, R., ... and McCarron, M. 2020. Biopsychosocial factors associated with depression and anxiety in older adults with intellectual disability: results of the wave 3 intellectual disability supplement to the Irish longitudinal study on ageing. Journal of Intellectual Disability Research, 64(5): 368-380.
Botsford, A.L. 2000. Integrating end of life care into services for people with an intellectual disability. Social Work in Health Care, 31(1):35-48.
Boveri T. 1929. The origin of malignant tumors. Baltimore: Williams and Wilkins.
Brennan D, Murphy R, McCallion P, McCarron M. 2018. "What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland. J Appl Res Intellect Disabil. 2018 Mar;31(2):226-235. DOI: 10.1111/jar.12379. Epub 2017 Jun 30. PMID: 28665022.
Brotherton, M., Stancliffe, R. J., Wilson, N. J., and O'Loughlin, K. 2016. Supporting workers with intellectual disability in mainstream employment to transition to a socially inclusive retirement. Journal of Intellectual and Developmental Disability, 41(1): 75-80. DOI: https://doi.org/10.3109/13668250.2015.1078878
Brotherton, M., Stancliffe, R. J., Wilson, N. J., and O’Loughlin, K. 2020. Australians with intellectual disability share their experiences of retirement from mainstream employment. Journal of Applied Research in Intellectual Disabilities, 1–12. DOI: https://doi.org/10.1111/jar.12712.
Brumley, R.D., Enguidanos, S., and Cherin, D.A. 2003a. Effectiveness of a home-based palliative care program for end-of-life. Journal of Palliative Medicine, 6(5):715-724.
Brunner, E., and Marmot, M. 2006. Social organization, stress, and health. In M. Marmot and R. G. Wilkinson (Eds.), Social determinants of health (2nd ed., pp. 6–30). Oxford University Press.
Burke, E., McCarron, M., Carroll, R., McGlinchey, E., and McCallion, P. 2014. What it’s like to grow older: The aging perceptions of people with an intellectual disability in Ireland. Intellectual and Developmental Disabilities, 52(3), 205–219. DOI: https://doi.org/10.1352/1934-9556-52.3.205.
Care Quality Commission (CQC). 2016. A different ending: addressing inequalities in end of life care. Overview report, https://www.cqc.org.uk/sites/default/files/20160505%20 CQC_EOLC_OVERVIEW_FINAL_3.pdf.
Carpenter, B. 2005. Early childhood intervention: Possibilities and prospects for professionals, families and children. British Journal of Special Education, 32(4):176-183.
Chadwick, D.D., Jolliffe, J., and Goldbart, J. 2002. Carer knowledge of dysphagia management strategies. International Journal of Language and Communication Disorders, 27(3):135-144.
Carey, E., and Ryan, R. 2019. Chapter 14 informed consent. In J. L. Matson (Ed.), Handbook of intellectual disabilities integrating theory, research and practice. Springer. 221–247.
Carmeli, E., Bachar, A., Rom, O., and Aizenbud, D. 2015. Oxidative stress and nitric oxide in sedentary older adults with intellectual and developmental disabilities. In: Pathophysiology of Respiration (pp. 21-27). Springer, Cham.
Chou, Y.C., Jane Lu, Z.Y., and Pu, C.Y. 2013. Menopause experiences and attitudes in women with intellectual disability and in their family carers. Journal of Intellectual and Developmental Disability, 38(2): 114-123.
Clute, M.A. (2017). Living disconnected: Building a grounded theory view of bereavement for adults with intellectual disabilities. OMEGA-Journal of Death and Dying, 76(1): 15-34.
Clute, M. 2010. Bereavement interventions with adults with intellectual disabilities: What works? OMEGA—Journal of Death and Dying, 61(2): 163–177. DOI: https://doi.org/10.2190/OM.61.2.e.
Commission on Social Determinants of Health. 2008. Closing the gap in a generation: Health equity through action on the social determinants of health. World Health Organization. https://apps.who.int/iris/bitstream/han dle/10665/43943/9789241563703_eng.pdf;jsess.
Cooper, S.A., and Bailey, N.M. 2001. Psychiatric disorders amongst adults with learning disabilities - prevalence and relationship to ability level. Irish Journal of Psychological Medicine, 18(2): 45–53. DOI: https:// doi.org/10.1017/S0790966700006315.
Cooper, S.A., Smiley, E., Morrison, J., Williamson, A., Allan, L. 2007. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry, 190(1):27–35.
Cooper, S.A., McLean, G., Guthrie, B., McConnachie, A., Mercer, S., Sullivan, F., and Morrison, J. 2015. Multiple physical and mental health comorbidity in adults with intellectual disabilities: Population-based cross-sectional analysis. BMC Family Practice, 16, 110. https://doi. org/10.1186/s12875-015-0329-3.
Cumming, E. and Henry, W. 1961. Growing Old: The Process of Disengagement. New York: Basic Books.
Dannefer, D. 2003. Cumulative advantage/disadvantage and the life course: Cross-fertilizing age and social science theory. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58(6), S327–S337. DOI: https://doi.org/10.1093/geronb/58.6.S327.
Davies, E. and Higginson, I.J. (Eds.) 2004. The Solid Facts: Palliative Care. Copenhagen: World Health Organization.
Dekker, M.C., Koot, H.M., van-der-Ende, J., and Verhulst, F.C. 2002. Emotional and behavioral problems in children and adolescents with and without intellectual disability. Journal of Child Psychology and Psychiatry and Allied Disciplines, 43:1087-1098.
De Winter, C.F., Van den Berge, A.P.J., Schoufour, J.D., Oppewal, A., and Evenhuis, H. M. 2016. A 3-year follow-up study on cardiovascular disease and mortality in older people with intellectual disabilities. Research in Developmental Disabilities, 53: 115-126.
De Winter, C.F., Bastiaanse, L.P., Hilgenkamp, T.I.M., Evenhuis, H.M., and Echteld, M.A. 2012. Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: results of the HA-ID study. Research in Developmental Disabilities, 33(6): 1722-1731.
DH. 2004. National Service Framework for Children, Young People and Maternity Services. London: Department of Health.
DH. 2007. Obesity General Information. London: Department of Health.
DH. 2010. National Framework for Children and Young People’s Continuing Care. London: Department of Health.
Diggs, J. 2008. Activity Theory of Aging. Encyclopedia of Aging and Public Health, pp 79- 81.
Dahlgren, G., and Whitehead, M. 1991. Policies and strategies to promote social equity in health. Institute for Future Studies. https://core.ac.uk/download/pdf/6472456.pdf
Dilman, V.M. 1971. "Age-associated elevation of hypothalamic, threshold to feedback control, and its role in development, ageing, and disease". The Lancet, 1 (7711): 1211–9. DOI: 10.1016/s0140-6736(71)91721-1. PMID 4103080.
Dilman, V.M., Revskoy, S.Y., and Golubev, A.G. 1986. "Neuroendocrine-Ontogenetic Mechanism of Aging: Toward An Integrated Theory of Aging". International Review of Neurobiology, 28: 89–156. DOI:
10.1016/S0074-7742(08)60107-5. ISBN 9780123668288. PMID 3542876.
Dixon-Ibarra, A., Lee, M., and Dugala, A. 2013. Physical activity and sedentary behavior in older adults with intellectual disabilities: A comparative study. Adapted Physical Activity Quarterly, 30(1):1-19.
Dodd, P., Guerin, S., McEvoy, J., Buckley, S., Tyrrell, J., and Hillery, J. 2008. A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research, 52: 415–425. DOI: https://doi. org/10.1111/j.1365-2788.2008.01043.x.
Doka, K. 2002. Disenfranchised grief: new directions, challenges and strategies for practice; Champaign, IL, Research Press.
Doody, C.M., Markey, K., and Doody, O. 2013a. Future need of ageing people with an intellectual disability in the Republic of Ireland: Lessons learned from the literature. British Journal of Learning Disabilities, 41(1):13-21.
Doody, C., Markey, K., and Doody, O. 2013b. The experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Journal of Clinical Nursing, 22(7/8):1112-1123.
Doyle A, O'Sullivan M, Craig S, McConkey R. 2021. People with intellectual disability in Ireland are still dying young. J Appl Res Intellect Disabil, 34(4):1057-1065. DOI: 10.1111/jar.12853. Epub 2020 Dec 30. PMID: 33377272; PMCID: PMC8359186.
Doyle, A., O’Sullivan, M., Craig, S., and McConkey, R. 2021. People with intellectual disability in Ireland are still dying young. Journal of Applied Research in Intellectual Disabilities, 34(4): 1057-1065.
.
Emerson, E. and Hatton, C. 2007. The Mental Health of Children and Adolescents with Learning Disabilities in Britain. Lancaster: Institute for Health Research, Lancaster University.
Emerson, E. and Hatton, C. 2008. People With Learning Disabilities in England, CeDR Research Report. Lancaster: University of Lancaster.
Emerson, E., Einfeld, S., and Stancliffe, R. 2010. The mental health of young children with intellectual disabilities or borderline intellectual functioning. Social Psychiatry & Psychiatric Epidemiology, 45(5):579-587.
Emerson, E., Hatton, C., Robertson, J., Roberts, H., Baines, S., Evison, F. and Glover, G. (2012) People with Learning Disabilities in England 2011. Lancaster: Learning Disabilities Observatory, University of Lancaster.
Emerson, E., Baines, S., Allerton, L., and Welch, V. 2012. Health inequalities & people with learning disabilities in the UK: 2012. Learning Disabilities Observatory. http://complexneeds.org.uk/modules/Module-4.1-Workingwith-other-prof...
Emerson, E., Madden, R., Graham, H., Llewellyn, G., Hatton, C., and Robertson, J. 2011. The health of disabled people and the social determinants of health. Public Health, 125(3), 145–147. DOI: https://doi.org/10.1016/j. Puhe.2010.11.003.
Engeland, J., Kittelsaa, A.M., and Langballe, E.M. 2018. How do people with intellectual disabilities in Norway experience the Transition to Retirement and Life as Retirees?. Scandinavian Journal of Disability Research, 20(1), 72–81. DOI: http://doi.org/10.16993/sjdr.41.
Engeland, J., Strand, B. H., Innstrand, S. T., and Langballe, E. M. 2020. Employment and attendance in day care centres for people with mild intellectual disabilities–do age, gender, functional level or hospital admissions matter?. Journal of Intellectual Disability Research, 64(3), 197–208. DOI: https://doi.org/10.1111/jir.12709.
Erikson, E.H. (1950) Childhood and society, New York: W.W. Norton.
Erikson, E.H. (1982) The life cycle completed, New York: W.W. Norton.
Erikson, J.M. (1997) ‘The lifecycle completed – extended version with chapters on the ninth stage of development, New York: W.W. Norton and Company.
Evans, D.S., McGuire, B.E., Healy, E., and Carley, S.N. 2009. Sexuality and personal relationships for people with an intellectual disability. Part II: Staff and family carer perspectives. Journal of Intellectual Disability Research, 53(11):913-921.
Evenhuis, H.M., Hermans, H., Hilgenkamp, T.I.M., Bastiaanse, L.P., and Echteld, M.A. 2012. Frailty and disability in older adults with intellectual disabilities: Results from the healthy ageing and intellectual disability study. Journal of the American Geriatrics Society, 60(5):934-938.
Fisher, K. and Kettl, P. 2005. Aging with mental retardation: Increasing population of older adults with MR require health interventions and prevention strategies. Geriatrics, 60:26-29.
Flynn, E. and Arstein-Kerslake, A. 2014. 'Legislating personhood: Realising the right to support in exercising legal capacity', International Journal of Law in Context, 10(01): 81-104.
Fontaine, K.R., Redden, D.T., Wang, C., Westfall, A.O., and Allison, D.B. 2003. Years of life lost due to obesity. Journal of American Medical Association, 289(2):187-193.
Fritz, R., Edwards, L. and Jacob, R. 2021. Osteoporosis in Adult Patients with Intellectual and Developmental Disabilities: Special Considerations for Diagnosis, Prevention, and Management. Southern Medical Journal, 114, 4, 246-251.
García-Domínguez, L., Navas, P., Verdugo, M. Á., and Arias, V. B. 2020. Chronic health conditions in aging individuals with intellectual disabilities. International Journal of Environmental Research and Public Health, 17(9): 3126.
Glaesser, R.S. and Perkins, E.A. 2013. Self-injurious behavior in older adults with intellectual disabilities. Social Work, 58(3):213-221.
Glover G., Williams R., Heslop P., Oyinlola J. and Grey J. 2017. Mortality in people with intellectual disabilities in England. Journal of Intellectual Disability Research, 61: 62–74.
Gray, J. A., and Abendroth, M. 2016. Perspectives of US direct care workers on the grief process of persons with intellectual and developmental disabilities: implications for practice. Journal of Applied Research in Intellectual Disabilities, 29(5): 468-480.
Gray, D.E. 2002. Everybody just freezes. Everybody is just embarrassed: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness, 24(6):734-749.
Griffith, G.M., Hastings, R.P., Nash, S., and Hill, C. 2010. Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism & Developmental Disorders, 40(5):610-619.
Hallawell, B., Stephens, J., and Charnock, D. 2012. Physical activity and learning disability. British Journal of Nursing, 21(1):609-612.
Harman, D. 1957. Prolongation of the normal life span by radiation protection chemicals. J. Gerontol. 12: 257-263.
Hassall, R., Rose, J., and McDonald, J. 2005. Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49(6):405-418.
Hastings, R.P., Beck, A., Daley, D., and Hill, C. 2005. Symptoms of ADHD and their correlates in children with intellectual disabilities. Research in Developmental Disabilities, 26(5):456-468.
Hatton, C. and Emerson, E. 2003. Families with a person with intellectual disabilities: Stress and impact. Current Opinion in Psychiatry, 16:497-501.
Hatton, C. and Emerson, E. 2004. The relationship between life events and psychopathology amongst children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17(2):109-117.
Haveman, M. 2019. Ageing and physical health. In Prasher VP and Janick P (eds) Physical Health of Adults with Intellectual and Developmental Disabilities. Springer Nature, Switzerland, pp. 305–334. DOI: 10.1007/978-3-319-90083-4_15.
Haverman, M., Heller, T., Lee, L., Maaskant, M., Shooshtari, S., and Strydom, A. 2010. Major health risks in aging persons with intellectual disabilities: An overview of recent studies. Journal of Policy and Practice in Intellectual Disabilities, 7(1):55-69.
Haverman, M., Perry, J., Salvador-Carulla, L., Walsh, P.N., Kerr, M. Van Schrojenstein Lantman-de Valk, H., Van Hove, G., Berger, Dasa, M., Azema, B., Buono, S., Cara, A.C., Germanavicius, A., Linehan, C., Maatta, T., Tossebro, J., and Weber, G. 2011. Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study. Journal of Intellectual and Developmental Disability, 36(1):49-60.
Havighurst, R.J. 1961. ‘Successful aging’, The Gerontologist, 1: 8-13.
Healy, E., McGuire, B.E., Evans, D.S., and Carley, S.N. 2009. Sexuality and personal relationships for people with an intellectual disability. Part I: Service-user perspectives. Journal of Intellectual Disability Research, 53(11):905-912.
Health Service Executive (HSE). 2020. National Framework for the Integrated Prevention and Management of Chronic Disease in Ireland 2020-2025 Integrated Care Programme for the Prevention andManagementofChronicDisease. Available online: https://www.hse.ie/eng/about/who/cspd/icp/chronic-disease/documents/...

Heller, T. 2004. Aging with developmental disabilities: Emerging models for promoting health, independence, and quality of life. In B. J. Kemp and L. Mosqueda (Eds.), Aging with a disability: What a clinician needs to know (pp. 213–233). Baltimore, MD: Johns Hopkins University Press.
Heller, T. 2019. Bridging aging and intellectual/developmental disabilities in research, policy, and practice. Journal of Policy and Practice in Intellectual Disabilities, 16(1): 53-57.
Heller, T. and Harris, S.P. 2012. Disability through the life course. California: Sage.
Hermans, H. and Evenhuis, H.M. 2013. Factors associated with depression and anxiety in older adults with intellectual disabilities: Results of the healthy ageing and intellectual disabilities study. International Journal of Geriatric Psychiatry, 28 (7):691-699.
Hermans, H., Beekman A.T., Evenhuis H.M. 2013. Prevalence of depression and anxiety in older users of formal Dutch intellectual disability services. J Affect Disord, 144(1–2): 94–100.
Hermans, H. and Evenhuis, H.M. 2014. Multimorbidity in older adults with intellectual disabilities. Research in Developmental Disabilities, 35, 776-783.
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., and Russ, L. 2013. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: University of Bristol.
Heslop, P., Blair P. S., Fleming P., Hoghton M., Marriott A. and Russ L. 2014. The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population‐based study. The Lancet, 383: 889–95. DOI: https://doi.org/10.1016/S0140-6736(13)62026-7.
Heslop, P. and Glover, G. 2015. Mortality of people with intellectual disabilities in England: a comparison of data from existing sources. Journal of Applied Research in Intellectual Disabilities, 28: 414–22.
Hole, R.D., Stainton, T., and Wilson, L. 2013. Ageing adults with intellectual disabilities: Self-advocates’ and family members’ perspectives about the future. Australian Social Work, 66(4):571-589.
Holland, A.J. 2000. Ageing and learning disability. British Journal of Psychiatry, 174: 26–31. DOI: 10.1192/bjp.176.1.26.
Hollins, S., and Esterhuyzen, S. 1997. Bereavement and grief in adults with learning disabilities. The British Journal of Psychiatry, 170, 497– 501. DOI: https://doi.org/10.1192/bjp.170.6.497.
Hosking F. J., Carey I. M., Shah S. M., Harris T., Dewilde S., Beighton C. et al. 2016. Mortality among adults with intellectual disability in England: comparisons with the general population. American Journal of Public Health,106: 1483–90.
Hsieh, K., Scott, H. M., and Murthy, S. 2020. Associated risk factors for depression and anxiety in adults with intellectual and developmental disabilities: Five-year follow up. American Journal on Intellectual and Developmental Disabilities, 125(1): 49-63.
Hussain, R., Wark, S., Janicki, M. P., Parmenter, T., and Knox, M. 2020. Multimorbidity in older people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 33(6): 1234-1244.
Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing’(IDS-TILDA) 2021. User Information Guide. The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) Trinity Centre for Ageing and Intellectual Disability (TCAID) Trinity College Dublin, The University of Dublin
Integrated Care for Older People (ICOPE) Implementation Network: Guidance for Systems and Services, World Health Organization, Geneva, 2019.
Integrated Care for Older People (ICOPE): Guidance for Person-centred Assessment and Pathways in Primary Care, World Health Organization, Geneva, 2019.
Jaul, E., and Barron, J. 2017. Age-related diseases and clinical and public health implications for the 85 years old and over population. Frontiers in public health, 5: 335.
Jenkins, R. 2010. How older people with learning disabilities perceive ageing. Nursing Older People, 22(6):33-37.
Jones, A., Tuffrey-Wijne, I., Bernal, J., Butler, G., and Hollins, S. 2007. Meeting the cancer information needs of people with learning disabilities: Experiences of paid carers. British Journal of Learning Disabilities, 35:12-18.
Jung, C.G. 1960. On the nature of the psyche. In H. Read, M. Fordham,and G. Adler (Eds.) and R. F. C. Hull (Trans.), The collected works of C.G. Jung (Vol. 8, pp. 159-234). New York: Pantheon Books.
Kerr, M., Richards, D., and Glover, G. 1996. Primary care for people with a learning disability—a group practice survey. Journal of Applied Research in Intellectual Disability, 9(4):347-352.
Kessel, S., Merrick, J., Kedem, A., Borovsky, L., and Carmeli, E. 2002. Use of group counseling to support aging-related losses in older adults with intellectual disabilities. Journal of Gerontological Social Work, 38(1/2):241-251.
Kilic, D., Gencdogan, B., Bag, B., and Arican, D. 2013. Psychosocial problems and marital adjustments of families caring for a child with intellectual disability. Sexuality & Disability, 31(3):287-296.
Kingston A, Robinson L, Booth H, et al. 2018. Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model. Age Ageing, 47:374–80. doi:10.1093/ageing/afx201

Kirkpatrick, K. 2011. A home of my own—progress on enabling people with learning disabilities to have choice and control over where and with whom they live. Health, 107:153-162.
Krinsky-McHale, S.J. and Silverman, W. 2013. Dementia and mild cognitive impairment in adults with intellectual disability: Issues of diagnosis. Developmental Disabilities Research Review, 18(1):31-42.
.
Lacy, P and Ouvry, C. (Eds) 1998. People with Profound and Multiple Learning Disabilities: A Collaborative Approach to Meeting Complex Needs. London: David Fulton.
Lauer E., Heslop P., and Hoghton M. 2015. Identifying and addressing disparities in mortality: US and UK perspectives. International Review of Research in Developmental Disabilities, 48: 195–245.
Landes, S.D., Stevens, J.D., and Turk, M A. 2021. Cause of death in adults with intellectual disability in the United States. Journal of Intellectual Disability Research, 65(1): 47-59.
Lawton M.P. 1982. Competence, environmental press, and the adaptation of older people. In Lawton, M.P., Windley, P.G., Byens, T.O., editors: Aging .and the environment: theoretical approaches, New York, Springer.
Lehmann, B.A., Bos, A.E.R., Rijken, M., Cardol, M., Peters, G.J.Y., Kok, G., and Curfs, L.M.G. 2013. Ageing with an intellectual disability: The impact of personal resources on well-being. Journal of Intellectual Disability Research, 57(11):1068-1078.
Lennartsson C, and Heimerson I. 2012. Elderly people's health: Health in Sweden: The National Public Health Report. Chapter 5. Scand J Public Health, Dec;40(9 Suppl):95-120. DOI: 10.1177/1403494812459468. PMID: 23238403.
Li, S. and Ng, J. 2008. End-of-life care: Nurses’ experiences in caring for dying patients with profound learning disabilities—a descriptive case study. Palliative Medicine, 22:949-955.
Lifshitz, H., and Merrick, J. 2004. Aging among persons with intellectual disability in Israel in relation to type of residence, age, and etiology. Research in Developmental Disabilities, 25(2): 193-205.
Lin J-D, Wu C-L, Lin P-Y, Lin L-P, Chu CM. 2011. Early onset ageing and service preparation in people with intellectual disabilities: institutional managers’ perspective. Res Dev Disabil, 32:188–93. DOI: https://doi.org/10.1016/j.ridd.2010.09.018.
.
.
Lord, A. J., Field, S., and Smith, I. C. 2017. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. Journal of Applied Research in Intellectual Disabilities, 30(6): 1007-1021.
Lunsky, Y., De Oliveira, C., Wilton, A., & Wodchis, W. (2019). High health care costs among adults with intellectual and developmental disabilities: A population-based study. Journal of Intellectual Disability Research, 63(2), 124–137. https://doi.org/10.1111/jir.12554

Macali, L. 2009. Contemporary disability employment policy in Australia: How can it best support transitions from welfare to work? Australian Bulletin of Labour, 32(3):227-239.
Mafuba, K. and Gates, B. 2013. An investigation into the public health roles of community learning disability nurses. British Journal Learning Disability, DOI: 10.1111-bld.12071.
Marengoni, A. Angleman S, Melis R, et al. 2011. Aging with multimorbidity: a systematic review of the literature. Ageing Res Rev, 10:430–9. doi:10.1016/j.arr.2011.03.003

Marriott, A., Marriott, J., and Heslop, P. 2013. Good practice in helping people cope with terminal illnesses. Learning Disability Practice, 16(6):22-25.
McCausland, D., McCallion, P., Cleary, E., and McCarron, M. 2016. Social connections for older people with intellectual disability in Ireland: Results from wave one of IDS-TILDA. Journal of Applied Research in Intellectual Disabilities, 29(1): 71–82. DOI: https://doi.org/10.1111/jar.12159.
McCausland, D., Guerin, S., Tyrrell, J., Donohoe, C., O’Donoghue, I., and Dodd, P. 2010. Self-reported needs among older persons with intellectual disabilities in an Irish community-based service. Research in Developmental Disabilities, 31: 381–387. DOI: https://doi.org/10.1016/j.ridd.2009.10.005.
McCausland,D. McCallion, P. and McCarron, M. 2021. Health and Wellness Among Persons Ageing with Intellectual Disability Chapter 20 in Putnam, M. Handbook on Ageing with Disability (C. Bigby, Ed.) (1st ed.). Routledge. DOI: https://doi-org.proxy.lib.ul.ie/10.4324/9780429465352 Chapter 20|11 pages.
McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Carroll, R., and McCallion, P. 2013. Patterns of multimorbidity in an older population of persons with an intellectual disability: Results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA). Research in Developmental Disabilities, 34(1):521-527.
McCarron M, Swinburne J, Burke E, McGlinchey E, Carroll R, McCallion P. 2013. Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA). Res Dev Disabil, 34(1):521–7.
McCarron, M., Haigh, M., and McCallion, P. 2017. Health, Wellbeing and Social Inclusion: Ageing with an Intellectual Disability in Ireland, Evidence from the First Ten Years of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA), Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/wave3report.pdf.
McCarron, M., McCausland, D., Allen, A., Luus, R., Sheerin, F., Burke, E., . . . McCallion, P. 2020. The impact of COVID-19 on people ageing with an intellectual disability in Ireland. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/wave4idstildareport.pdf .
McCarron, M., Swinburne, J., Burke, E., McGlinchy, E., Mulryan, N., Andrews, V., . . . McCallion, P. 2011. Growing older with an intellectual disability in Ireland 2011: First results from the Intellectual Disability Supplement of the Irish Longitudinal Study on Ageing. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/idstildareport2011.pdf.
McCarron, M., Cleary, E., and McCallion, P. 2017. Health and health-care utilization of the older population of Ireland: Comparing the intellectual disability population and the general population. Research on Aging, 39(6), 693–718.
McCarron, M., O'Dwyer, M., Burke, E., McGlinchey, E., and McCallion, P. 2014. Epidemiology of epilepsy in older adults with an intellectual disability in Ireland: Associations and service implications. American Journal on Intellectual and Developmental Disabilities, 119(3): 253–260.
McConkey, R., Truesdale-Kennedy, M., Chang, M., Jarrah, S., and Shukri, R. 2008. The impact on mothers of bringing up a child with intellectual disabilities: A cross-cultural study. International Journal of Nursing Studies, 45(1):65-74.
Mcdermott, S. and Edwards, R. 2012. Enabling self-determination for older workers with intellectual disabilities in supported employment in Australia. Journal of Applied Research in Intellectual Disabilities, 25(5):423-432.
McEvoy, J., Treacy, B., and Quigley, J. 2017. A matter of life and death: Knowledge about the body and concept of death in adults with intellectual disabilities. Journal of Intellectual Disability Research, 61: 89–98. DOI: https://doi.org/10.1111/jir.12347.
McGarrigle, C.A., Cronin, H., and Kenny, R.A. 2014. The impact of being the intermediate caring generation and intergenerational transfers on self-reported health of women in Ireland’. International Journal of Public Health, 59(2): 301–308.
McGlinchey, E., McCallion, P., McDermott, S., Foley, M., Burke, E.A., O’Donovan, M.A., McCausland, D., Gibney, S., McCarron, M. 2019. Positive Ageing Indicators for People with an Intellectual Disability 2018. Dublin: Trinity Centre for Ageing and Intellectual Disability.
McGlinchey, E., Carroll, R., and McCallion, P. 2013. Patterns of multimorbidity in an older population of persons with intellectual disability: Results from intellectual disability supplement to the Irish longitudinal study on aging (IDSTILDA). Research in Developmental Disabilities, 34(1), 52.
McKenzie, K., and Wright, R. 2012. The impact of staff training on the knowledge of support staff in relation to bereavement and people with an intellectual disability. British Journal of Learning Disabilities, 40, 194–200. DOI: https://doi.org/10.1111/j.1468-3156.2011. 00693.x
McKenzie, K., Ouellette‐Kuntz, H. and Martin, L., 2017. Applying a general measure of frailty to assess the aging related needs of adults with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 14(2):124-128.
McKenzie, N., Mirfin-Veitch, B., Conder, J., & Brandford, S. (2017). "I'm still here": Exploring what matters to people with intellectual disability during advance care planning. Journal of Applied Research in Intellectual Disabilities, 30, 1089–1098. https://doi.org/10.1111/ jar.12355
McMunn, A., Breeze, E., Goodman, A., Nazroo, J. and Oldfield, Z. 2006. Social determinants of health in older age. Social Determinants of Health, 2: 267–298.
Maslow, A.H. 1943. "A theory of human motivation". Psychological Review. 50 (4): 370–396.
Meyer, I. 2019. The complexity of caring for the dying - an empirical approach to understanding palliative care as integrated care in the German healthcare system. International Journal of Integrated Care, 19(S1): A491, pp. 1-8, DOI: dx.doi.org/10.5334/ijic.s3491

Mishra V and Barratt J. 2016. Reablement and Older People. Final Report from Copenhagen Summit. Available at http://www.ifa-copenhagen-summit.com/wp-content/uploads/2016/04/Cope...
Morad, M., Nelson, N. P., Merrick, J., Davidson, P. W., and Carmeli, E. 2007. Prevalence and risk factors of constipation in adults with intellectual disability in residential care centers in Israel. Research in Developmental Disabilities, 28(6): 580-586.
Morgan, N., & McEvoy, J. 2014. Exploring the bereavement experiences of older women with intellectual disabilities in long-term residential care: A staff perspective. Omega-Journal of Death and Dying, 69: 117– 135. DOI: https://doi.org/10.2190/OM.69.2.b.
National End of Life Care Programme 2011 The route to success in end of life care – achieving quality for people with learning disabilities. Leicester, National End of Life Care Programme
National Health Service (NHS) 2021. National Palliative and End of Life Care Partnership. Ambitions for palliative and end of life care: a national framework for local action 2021–2026. 2nd edition. UK. available online: https://www.england.nhs.uk/wp-content/uploads/2022/02/ambitions-for-...
National Institute for Health and Care Excellence (NICE) 2018. Care and Support for People Growing Older with Learning Disabilities. Online: https://www.nice.org.uk/guidance/ng96/
National Institute for Health and Care Excellence 2021a. Shared Decision Making. Online: nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-making.
National Institute for Health and Care Excellence 2021b. Managing Symptoms for an Adult in the Last Days of Life. Online: pathways.nice.org.uk/pathways/end-of-life-care-for-people-with-lifelimiting-conditions#path=view%3A/pathways/end-of-life-care-for-people-with-life-limitingconditions/managing-symptoms-for-an-adult-in-the-last-days-of-life.xml&content=view-index
Ng, J. and Li, S. 2003. A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. European Journal of Cancer Care, 12:12-19.
Noorlandt, H W et al. 2021. “Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.” Journal of Applied Research in Intellectual Disabilities 34: 1538 - 1548.
O'Leary, L., Cooper, S.A., and Hughes‐McCormack, L. 2018. Early death and causes of death of people with intellectual disabilities: a systematic review. Journal of Applied Research in Intellectual Disabilities, 31(3): 325-342. DOI: 10.1111/jar.12417. Epub 2017 Oct 6. PMID: 28984406.
Oppewal, A., Schoufour, J.D., Maarl, H.J.K.V.D., Evenhuis, H.M., Hilgenkamp T.I.M. and Festen, D.A., 2018. Causes of mortality in older people with intellectual disability: results from the HA‐ID study. American Journal on Intellectual and Developmental Disabilities, 123, 61–71.
Oviedo, G.R., Javierre, C., Font-Farré, M., Tamulevicius, N., Carbó-Carreté, M., Figueroa, A., Pérez-Testor, S., Cabedo-Sanromá, J., Moss, S.J., Massó-Ortigosa, N. and Guerra-Balic, M. 2020. Intellectual disability, exercise and aging: the IDEA study: study protocol for a randomized controlled trial. BMC public health, 20(1): pp.1-16.
Palliative Care for People with Learning Disabilities (PCPLD). Delivering high quality end of life care for people who have a learning disability. Resources and tips for commissioners, service providers and health and social care staff. Developed by NHS England in association with the PCPLD Network, https://www.england.nhs.uk/publication/delivering-high-quality-end-o...
Peck. R. 1956. Psychological developments in the second half of life. In J. E. Anderson, (Ed.), Psychological Aspects of Aging (pp. 42 – 53). Washington, DC: American Psychological Association.
Perkins EA, Moran JA. 2010. Aging adults with intellectual disabilities. Jama, 304(1):91–2.
Perkins, E.A., and Haley, W.E. 2010. Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55(4): 409–417.
Parmenter, T.R. 1999. Implications of social policy for service delivery: The promise and the reality. Journal of Intellectual and Developmental Disability, 24(4):321-331.
Quilgars, D., Searle, B., and Keung, A. 2005. Mental health and well-being. In: Bradshaw, J., and Mayhew, E., (Eds.). The Well-Being of Children in the UK. London: Save the Children, pp.134-160.
RCN 2004. Adolescent Transition Care: Guidance for Nursing Staff. London: Royal College of Nursing.
Read, S., and Elliott, D. 2003. Death and learning disability: A vulnerability perspective. The Journal of Adult Protection, 5 (1): 5-14. DOI: https://doi.org/10.1108/14668203200300002.
Read, S. 1998. Learning disabilities. The palliative care needs of people with learning disabilities. International Journal of Palliative Nursing, 4(5):246-251.
Read, S. 2005. Learning disabilities and palliative care: Recognizing pitfalls and exploring potential. International Journal of Palliative Nursing, 11:15-20.
Read S. and Bowler C. 2007. Life story work and bereavement: shared reflections on its usefulness. Learning Disability Practice, 10: 10–5.
Read, S. (ed.). 2014. Supporting people with intellectual disabilities experiencing loss and bereavement: theory and compassionate practice. London, Jessica Kingsley.
Reddall, C. 2010. A palliative care resource for professional carers of people with learning disabilities. Journal of Cancer Care, 19(4):469-475.
Reilly, C. and Ballantine, R. 2011. Epilepsy in school-aged children: More than just seizures? Support for Learning, 26(4):144-151.
Reilly, D.E., Raymond, K., O'Donnell, C. 2020. “It was emotional”—A group for people with learning disabilities to talk about end of life. Br J Learn Disability, 48: 199– 205. https://doi.org/10.1111/bld.12317
Riley, M. W. 1987. On the significance of age in sociology. American Sociological Review, 1-14.
Rimmer, J.H. and Yamaki, K. 2006. Obesity and intellectual disability. Mental Retardation and Developmental Disability Research Review, 12(1):22-27.
.
Rogers, C. 2011. Disabling a family? Emotional dilemmas experienced in becoming a parent of a child with learning disabilities. British Journal of Special Education, 34(3):136-143.
Rowe, J. and Kahn, R. 1997. ‘Successful aging’, The Gerontologist, 27(4): 433-440.
Rudnicka, E., Napierała, P., Podfigurna, A., Męczekalski, B., Smolarczyk, R., and Grymowicz, M. 2020. The World Health Organization (WHO) Approach to Healthy Ageing. Maturitas, 139, 6–11. 2022. JOSING: Journal of Nursing and Health, 2 (2):77-84. DOI: https://doi.org/10.1016/j.maturitas.2020.05.018.
Ryan, J., McCallion, P., McCarron, M., Luus, R., and Burke, E. A. 2021. Overweight/obesity and chronic health conditions in older people with intellectual disability in Ireland. Journal of Intellectual Disability Research, 65(12): 1097-1109.
Ryan, K., McEvoy, J. Guerin, S., and Dodd, P. 2010. An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. Palliative Medicine, 24(6):566-572.
Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J., Buntinx, W. H.,Coulter, D. L., Craig, E. M., Gomez, S. C., Lachapelle, Y., Luckasson, R.,Reeve, A., Shogren, K. A., Snell, M. E., Spreat, S., Tasse, M. J.,Thompson, J. R., Verdugo-Alonso, M. A., Wehmeyer, M. L., and Yeager, M. H. 2010.Intellectual disability: Definition, classification, and systems of supports. AAIDD.

Schoufour, J. D., Oppewal, A., van der Maarl, H. J. K., Hermans, H., Evenhuis, H. M., Hilgenkamp, T. I. M., and Festen, D. A. 2018. Multimorbidity and polypharmacy are independently associated with mortality in older people with intellectual disabilities: A 5‐year follow‐up from the HA‐ID study. American Journal on Intellectual and Developmental Disabilities, 123(1): 72–82. DOI: https://doi. org/10.1352/1944-7558-123.1.72.
Seymour, S. and C. Ingleton 2008. Transitions into the terminal phase: Overview. In, Payne, S., Seymour, J. and Ingleton, C. Palliative Care Nursing: Principles and evidence for practice. Glasgow: Bell and Bain, pp. 181-211.
Shaw, K., Cartwright, C., and Craig, J. 2011. The housing and support needs of people with an intellectual disability into older age. Journal of Intellectual Disability Research, 55(9):895-903.
Shobana, M. and Saravanan, C. 2014. Comparative study on attitudes and psychological problems of mothers towards their children with developmental disability. East Asian Archives of Psychiatry, 24(1):16-22.
Shultz, K. S., and Wang, M. 2011. Psychological perspectives on the changing nature of retirement. American Psychologist, 66(3): 170.
Stancliffe, R., Bigby, C., Balandin, S., Wilson, N., and Craig, D. 2015. Transition to retirement and participation in inclusive community groups using active mentoring: An outcomes evaluation with a matched comparison group. Journal of Intellectual Disability Research, 59(8): 703–718. DOI: https://doi.org/10.1111/jir.12174.
Stancliffe, R. J., Kramme, J. E., and Nye-Lengerman, K. 2018. Exploring retirement for individuals with intellectual and developmental disabilities: An analysis of National Core Indicators data. Intellectual and Developmental Disabilities, 56(4): 217–233. DOI: https://doi.org/10.1352/1934-9556-56.5.217.
Stancliffe, R. J., Nye-Lengerman, K. M., and Kramme, J. E. 2019. Aging, community-based employment, mobility impairment, and retirement: National Core Indicators–Adult Consumer Survey Data. Research and Practice for Persons with Severe Disabilities, 44(4): 251–266. DOI: https://doi.org/10.1177/1540796919882921.
Sue, K., Mazzotta, P., and Grier, E. 2019. Palliative care for patients with communication and cognitive difficulties. Canadian Family Physician Canadian Family Physician, 65(1), S19–S24.
Thorp, N., Stedmon, J., and Lloyd, H. 2018. “I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability. British Journal of Learning Disabilities, 46(1): 45-53.
Tornstam., L. 1997. ‘Gerotranscendence: The contemplative dimension of ageing’, Journal of Aging Studies, 11(2): 143-145.
Thuesen, J., Feiring, M., Doh, D. and Westendorp, R.G., 2021. Reablement in need of theories of ageing: would theories of successful ageing do?. Ageing & Society, pp.1-13.
Truesdale, M. and Brown, M. 2017. People with Learning Disabilities in Scotland: 2017 Health Needs Assessment Update Report. Glasgow: NHS Health
Thuesen, J., Feiring, M., Doh, D., and Westendorp, R. G. 2021. Reablement in need of theories of ageing: would theories of successful ageing do?. Ageing & Society, 1-13.
Tuffrey-Wijne I. 2013. How to Break Bad News: to people with learning disabilities. London, Jessica Kingsley.
Tuffrey-Wijne I and McLaughlin D. 2015. Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. Irene Tuffrey-Wijne and Dorry McLaughlin: on behalf of European Association for Palliative Care (EAPC) Taskforce on People with Intellectual Disabilities. https://www.eapcnet.eu/Portals/0/ adam/Content/FFuRunBZZ0Ofu2geYF_GIA/Text/EAPCWhite-Paper-ID_full-version_April-2015.pdf.
Turner, M. 2008. Preferred Place of Care Project 2005-2007 Final Report: 1-8. Updated 2011. (Online). Available at http://tinyurl.com/cokyt4s (accessed April 28, 2014).
United Nations. 2014. The right to adequate housing (Vol. Fact Sheet No. 21 (Rev.1)). Geneva: United Nations, Office of the High Commissioner for Human Rights. https://www.ohchr.org/documents/publications/ fs21_rev_1_housing_en.pdf
van den Akker M, Buntinx F and Knottnerus JA. 1996. Comorbidity or multimorbidity. Eur J Gen Pract, 2: 65–70.
van Schijndel‐Speet, M., Evenhuis, H. M., van Wijck, R., Van Montfort, K. C. A. G. M., & Echteld, M. A. 2017. A structured physical activity and fitness programme for older adults with intellectual disabilities: Results of a cluster‐randomised clinical trial. Journal of Intellectual Disability Research, 61(1), 16-29.
Vancampfort, D., Schuch, F., Van Damme, T., Firth, J., Suetani, S., Stubbs, B., and Van Biesen, D. 2020. Metabolic syndrome and its components in people with intellectual disability: a meta‐analysis. Journal of Intellectual Disability Research, 64(10): 804-815.
Verma, R.K. and Kishore, M.T. 2009. Needs of Indian parents having children with intellectual disability. International Journal of Rehabilitation Research, 32(1):71-76.
Wagemans, A., Van Schrojenstein Lantman-De Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I., and Curfs, L. 2013. The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: A qualitative study. Journal of Intellectual Disability Research, 57(4):380-389.
Walker, C. and Ward, C. 2013. Growing older together: Ageing and people with learning disabilities and their family carers. Tizard Learning Disability Review, 18(3):112-119.
Wiese, M., Stancliffe, R. J., Read, S., Jeltes, J., and Clayton, J. M. 2015. Learning about dying, death, and end-of-life planning: Current issues informing future actions. Journal of Intellectual and Developmental Disability, 40: 230–235. DOI: https://doi.org/10.3109/13668250.2014.9 98183.
Wiese, M., Dew, A., Stancliffe, R.J., Howarth, G., and Balandin, S. 2013. ‘If and when?’—the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57(10):980-992.
Williamson HJ, Contreras GM, Rodriguez ES, Smith JM, Perkins EA. 2017. Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review. OTJR (Thorofare N J). 37(4):227-236. doi: 10.1177/1539449217714148. Epub 2017 Jul 13. PMID: 28703641.

.
.
World Health Organization. 2019. Decade of healthy ageing 2020– 2030. https://www.who.int/initiatives/decade-of-healthy-ageing
World Health Organization. 2018. Handbook for national quality policy and strategy: A practical approach for developing policy and strategy to improve quality of care. World Health Organization; Licence: CC BY-NC-SA 3.0 IGO.
World Health Organization. 2015. World report on aging and health. Geneva: World Health Organization. https:// www.who.int/ageing/events/world-report-2015-launch/en/.
World Health Organization. 2011. Summary: World report on disability. World Health Organization. https://apps.who.int/ iris/bitstream/handle/10665/70670/WHO_NMH_VIP_11.01_ eng.pdf.
World Health Organization. 2002. Active ageing: A policy framework. Geneva: World Health Organization. https:// www.who.int/ageing/publications/active_ageing/en/.
World Health Organisation. 2002. WHO definition of palliative care. http://www.who.org.
Yang, Y.Y., and Lee, F.P. 2012. Concept analysis of feelings of loss among elderly nursing home residents. Hu Li Za Zhi, 59(4): 99-104. Chinese. DOI: 10.6224/JN.59.3.99. PMID: 22851400.
Young, H. 2016. Conceptualising bereavement in profound and multiple learning disabilities. Tizard Learning Disability Review, 21(4): 186–198. DOI: https://doi.org/10.1108/TLDR-09-2015-0035
Young, H. 2017. Overcoming barriers to grief: supporting bereaved people with profound intellectual and multiple disabilities. International Journal of Developmental Disabilities, 63(3): 131-137.
Young, H., and Garrard, B. 2016. Bereavement and loss: developing a memory box to support a young woman with profound learning disabilities. British Journal of Learning Disabilities, 44(1): 78-84.

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Desroches, M., Fisher, K., Ailey, S., Stych, J., McMillan, S., Horan, P., Marsden, D., Trip, H. and Wilson, N. 2022. Supporting the needs of people with developmental disabilities one year into the COVID-19 pandemic: An international, mixed methods study of nurses’ perspectives. Journal of Policy and Practice in Intellectual Disabilities. https://doi.org/10.1111/jppi.12411
A training resource to educate students about learning disabilities
Harper, L., Marsden, D., Darko, E., Summers, J., Scriverer, Hannah, Otasanya, Carolyn and Ambridge, A. 2020. A training resource to educate students about learning disabilities. Nursing Times. 116 (4), pp. 23-26.
Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”.
Tuffrey-Wijne, I., Lam, C., Marsden, D., Stapelberg, D., Newton, D., McDermott, M., Keagan-Bull, R., Jordon, L., Jeffrey, D., Harris, C. and Conway, B. 2020. Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”. British Journal of Learning Disabilities. 48 (4), pp. 301-314. https://doi.org/10.1111/bld.12331
Providing holistic care
Marsden, D. and Cooper, S. 2020. Providing holistic care. in: Heslop, P. and Hebron, C. (ed.) Promoting the Health and Well-Being of People with Learning Disabilities Cham Springer.
Supporting people with learning disabilities who identify as LGBT to express their sexual and gender identities
Robinson, Z., Marsden, D., Abdulla, S. and Dowling, F. 2020. Supporting people with learning disabilities who identify as LGBT to express their sexual and gender identities. Learning Disability Practice. https://doi.org/10.7748/ldp.2020.e2094
Inclusion of learning disability research in nursing journals : a review of 5 international journals 2013-2017
Marsden, D., Northway, R., Ross, S. and Statham, D. 2019. Inclusion of learning disability research in nursing journals : a review of 5 international journals 2013-2017.
An update on informed consent and the effect on the clinical practice of those working with people with a learning disability
Adams, D., Marsden, D., Carr, C. and Senior, K. 2018. An update on informed consent and the effect on the clinical practice of those working with people with a learning disability. Learning Disability Practice. https://doi.org/10.7748/ldp.2018.e1855
The 4C framework for making reasonable adjustments for people with learning disabilities
Marsden, D. and Giles, R. 2017. The 4C framework for making reasonable adjustments for people with learning disabilities. Nursing Standard. https://doi.org/10.7748/ns.2017.e10152
Cardiology
Marsden, D. 2016. Cardiology. in: Hardy, S., Chaplin, E. and Woodward, P. (ed.) Supporting the Physical Health Needs of People with Learning Disabilities : A Handbook for Professionals, Support Staff and Families Pavilion Publishing Ltd.
Respiratory illness
Marsden, D. 2016. Respiratory illness. in: Hardy, S., Chaplin, E. and Woodward, P. (ed.) Supporting the Physical Health Needs of People with Learning Disabilities : A Handbook for Professionals, Support Staff and Families Pavilion Publishing Ltd.
The twenty-first century : networking for success
Marsden, D. 2015. The twenty-first century : networking for success. in: Gates, B., Fearns, D. and Welch, J. (ed.) Learning Disability Nursing at a Glance Wiley-Blackwell. pp. 155-156
How East Kent is making the NHS workforce more inclusive
Marsden, D. 2013. How East Kent is making the NHS workforce more inclusive. Health Service Journal.
Networking opportunities for learning disability nurses
Abdulla, S., Marsden, D., Wilson, S. and Parker, M. 2013. Networking opportunities for learning disability nurses. Learning Disability Practice. 16 (5), pp. 30-32. https://doi.org/10.7748/ldp2013.06.16.5.30.e1434
Parking to achieve conscious competence: A reflection about practice development in the context of people with learning disabilities using hospital services
Marsden, D. 2012. Parking to achieve conscious competence: A reflection about practice development in the context of people with learning disabilities using hospital services. International Practice Development Journal. 2 (1).
The role of technology in learning disability nursing
Marsden, D., Green, A., March, T. and Ledington, S. 2012. The role of technology in learning disability nursing. Learning Disability Practice. 15 (3), pp. 28-30. https://doi.org/10.7748/ldp2012.04.15.3.28.c9009
Focus on the future
Atkinson, D., Marsden, D. and Menneer, N. 2012. Focus on the future. Learning Disability Practice. 15 (2), p. 9. https://doi.org/10.7748/ldp2012.03.15.2.9.p7683
Critical policy
Marsden, D. 2002. Critical policy. Learning Disability Practice. 5 (3), pp. 20-23. https://doi.org/10.7748/ldp.5.3.20.s14