Resources & References

Resources

AGE UK - a range of information relating to sexuality in later life
www.ageuk.org.uk

Age NI Alzheimer’s Society
www.alzheimers.org.uk

Easy to read with bite size information on sexuality and intimacy in care homes and how to support and maintain relationships
www.alzheimers.org.uk

Supporting a LGBTQ+ person with dementia
www.alzheimers.org.uk

This site will give some information on general and further training related to the mental capacity act
www.health-ni.gov.uk

The Last Taboo: A guide to dementia, sexuality, intimacy and sexual behaviour in care homes
ilcuk.org.uk

CQC (2019) Relationships and Sexuality in Adult Social Care Services: Guidance for CQC Inspection Staff and Registered Adult Social Care Providers
www.cqc.org.uk

CQC (2020) Promoting sexual safety through empowerment: A review of sexual safety and the support of people’s sexuality in adult social care.
www.cqc.org.uk

NICE guideline NG97 Dementia: assessment, management and support for people living with dementia and their carers
www.nice.org.uk

Dementia Learning and Development Framework
online.hscni.net

Alzheimer’s Society (April 2015) Factsheet 458: The Progression of Alzheimer’s Disease and Other Dementias
www.alzheimers.org.uk

NIdirect Government services. Information relating to legislation in Northern Ireland on paying for sexual services and Human Trafficking and Exploitation Act (2015)
www.nidirect.gov.uk

Equality Act 2010
www.legislation.gov.uk

Rainbow Project The Rainbow Project is a health organisation that works to improve the physical, mental & emotional health and wellbeing of LGBTQIA+ people and their families in Northern Ireland
www.rainbow-project.org

Information relating to sexual health
sexualhealthni.info

Relate NI Relate NI is a charity with a mission to make expert information and support for healthy relationships available for everyone.
www.relateni.org

Fee A, McIlfatrick S, Ryan A. ‘When it faded in her… it faded in me’: a qualitative study exploring the impact of care-giving on the experience of spousal intimacy for older male care-givers. Ageing & Society. 2021 Jan;41(1):29-50.

Shippee T, Rosser BS, Wright MM, Aumock C, Moone R, Talley KM, et al. Scoping Literature Review: Experiences of Sexual and Gender Minority Older Adults, With Diagnoses of Dementia, Who Use Residential Long-Term Services and Supports. Journal of Applied Gerontology. 2024;43(5):562-76.

Haesler E, Bauer M, Fetherstonhaugh D. Sexuality, sexual health and older people: A systematic review of research on the knowledge and attitudes of health professionals. Nurse education today. 2016 May 1;40:57-71.

Some Useful training links for staff

Sex, Gender and Sexuality in the Context of Dementia
A guide to raise awareness amongst health and social care workers
www.alzheimer-europe.org

Sex, intimacy and dementia
www.dementiauk.org

Sex, intimacy and dementia
www.alzheimers.org.uk

Older People in Care Homes: Sex, Sexuality and Intimate Relationships
An RCN discussion and guidance document for the nursing workforce
www.rcn.org.uk

Sexualities & Dementia
Education Resource for Health Professionals
dta.com.au

Relationships and sexuality in adult social care services
Guidance for CQC inspection staff and registered adult social care providers
www.cqc.org.uk

References

Home Page and Unit 1

  1. Lipinska D. Dementia, Sex and Wellbeing: A Person-Centred Guide for People with Dementia, Their Partners, Caregivers and Professionals: Jessica Kingsley Publishers; 2017.
  2. Dickinson T, Litvin,R., Horne,M., Brown Wilson, C., Simpson,P. and Hinchliff,S. Sexuality and Relationships in Later life  In: Ross FM, Harris R, Fitzpatrick JM, Abley C, editors. Redfern's nursing older people 5th ed. Glasgow: Elsevier Health Sciences; 2023. p. 397-413.
  3. Lipinska D, Heath H. Sexually speaking: person-centred conversations with people living with a dementia. Nursing older people. 2023;35(6).
  4. Barrett C, Hinchliff S. Addressing the sexual rights of older people: Routledge London; 2017.
  5. Hinchliff S, Gott M. Ageing and sexuality in western societies: Changing perspectives on sexual activity, sexual expression and the ‘sexy’older body.  Ageing and Sexualities: Routledge; 2017. p. 11-31.
  6. Lindau ST, Dale W, Feldmeth G, Gavrilova N, Langa KM, Makelarski JA, et al. Sexuality and cognitive status: a US Nationally representative study of Home‐Dwelling Older adults. Journal of the American Geriatrics Society. 2018;66(10):1902-10.
  7. Claes F, Enzlin P. Dementia and sexuality: A story of continued renegotiation. The Gerontologist. 2023;63(2):308-17.
  8. Wilson CB. Caring for people with dementia: a shared approach. london: sage; 2017.
  9. World, Health, Organisation. Defining sexual health: Report of a technical consultation on sexual health, 28-31 January 2002,  . Geneva2006.
  10. Duffy M. CLEAR dementia care©: A model to assess and address unmet needs: Jessica Kingsley Publishers; 2019.
  11. Carter M. The Person as Environmentally Integrated. Journal of Ethics and Social Philosophy. 2024;28(1).
  12. Mitchell G, McTurk V, Carter G, Brown-Wilson C. Emphasise capability, not disability: exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland. BMC Geriatrics. 2020;20(1).
  13. Sladden T, Philpott A, Braeken D, Castellanos-Usigli A, Yadav V, Christie E, et al. Sexual health and wellbeing through the life course: Ensuring sexual health, rights and pleasure for all. International Journal of Sexual Health. 2021;33(4):565-71.
  14. Nay R, Garratt S. Nursing older people: issues and innovations. 2nd ed. ed: Churchill Livingstone; 2004.
  15. Roelofs TSM, Luijkx KG, Embregts PJCM. Intimacy and sexuality of nursing home residents with dementia: A systematic review. International Psychogeriatrics. 2015;27(3):367-84.
  16. Gott M, Hinchliff S. How important is sex in later life? The views of older people. Social science & medicine. 2003;56(8):1617-28.
  17. Grigorovich A, Kontos P, Heesters A, Martin LS, Gray J, Tamblyn Watts L. Dementia and sexuality in long-term care: Incompatible bedfellows? Dementia. 2022;21(4):1077-97.
  18. Simpson P, Horne M, Brown LJE, Wilson CB, Dickinson T, Torkington K. Old(er) care home residents and sexual/intimate citizenship. Ageing and Society. 2017;37(2):243-65.
  19. Syme ML, Johnson PE, Fager M. Person-centered sexual expression: determining preferences of future nursing home residents. The Gerontologist. 2020;60(4):725-34.
  20. Eskola P, Jolanki O, Aaltonen M, editors. Through thick and thin: The meaning of dementia for the intimacy of ageing couples. Healthcare; 2022: MDPI.
  21. Horne M, Youell J, Brown LJ, Simpson P, Dickinson T, Brown-Wilson C. A scoping review of education and training resources supporting care home staff in facilitating residents’ sexuality, intimacy and relational needs. Age and ageing. 2021;50(3):758-71.
  22. Roelofs TSM, Luijkx KG, Embregts PJCM. Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective. Clinical Gerontologist. 2021;44(3):288-98.
  23. Smith AG, Bardach SH, Barber JM, Williams A, Rhodus EK, Parsons KK, et al. Associations of Future Cognitive Decline with Sexual Satisfaction among Married Older Adults. Clinical Gerontologist. 2021;44(3):345-53.
  24. Wright H, Jenks RA. Sex on the brain! Associations between sexual activity and cognitive function in older age. Age and Ageing. 2016;45(2):313-7.
  25. Doll GA. Sexuality and long-term care: Understanding and supporting the needs of older adults: Health Professions Press; 2012.
  26. Mitchell KR, Lewis R, O'Sullivan LF, Fortenberry JD. What is sexual wellbeing and why does it matter for public health? The Lancet Public Health. 2021;6(8):e608-e13.
  27. Flynn KE, Lin L, Bruner DW, Cyranowski JM, Hahn EA, Jeffery DD, et al. Sexual satisfaction and the importance of sexual health to quality of life throughout the life course of US adults. The journal of sexual medicine. 2016;13(11):1642-50.
  28. Sandberg LJ. Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis. Sexual and Relationship Therapy. 2023;38(1):118-39.
  29. Holdsworth K, McCabe M. The impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples: A systematic review. International Psychogeriatrics. 2018;30(1):15-29.
  30. Robinson JG, Molzahn AE. Sexuality and quality of life. Journal of Gerontological Nursing. 2007;33(3):19-29.
  31. Souza EVd, Viana ER, Cruz DP, Silva CdS, Rosa RS, Siqueira LR, et al. Relationship between family functionality and the quality of life of the elderly. Revista brasileira de enfermagem. 2021;75(2):e20210106.
  32. Victor CR, Rippon I, Nelis SM, Martyr A, Litherland R, Pickett J, et al. Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme. International Journal of Geriatric Psychiatry. 2020;35(8):851-8.
  33. Simpson P, Brown Wilson C, Brown LJE, Dickinson T, Horne M. The challenges and opportunities in researching intimacy and sexuality in care homes accommodating older people: a feasibility study. Journal of Advanced Nursing. 2017;73(1):127-37.

Unit 2

  1. Claes F, Enzlin P. Dementia and sexuality: A story of continued renegotiation. The Gerontologist. 2023;63(2):308-17.
  2. Lipinska D, Heath H. Sexually speaking: person-centred conversations with people living with a dementia. Nursing older people. 2023;35(6).
  3. Kitwood T. Dementia reconsidered: The person comes first: UK; 1997.
  4. Hennelly N, Cooney A, Houghton C, O’Shea E. Personhood and dementia care: A qualitative evidence synthesis of the perspectives of people with dementia. The Gerontologist. 2021;61(3):e85-e100.
  5. Kitwood T, Brooker D. Dementia reconsidered revisited: The person still comes first: McGraw-Hill Education (UK); 2019.
  6. Duffy F, Healy JP. A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: Rights, decision making and end-of-life care. Social Work in Health Care. 2014;53(6):568-83.
  7. Dickinson T, Litvin,R., Horne,M., Brown Wilson, C., Simpson,P. and Hinchliff,S. Sexuality and Relationships in Later life  In: Ross FM, Harris R, Fitzpatrick JM, Abley C, editors. Redfern's nursing older people 5th ed. Glasgow: Elsevier Health Sciences; 2023. p. 397-413.
  8. Dickinson T. ‘Curing queers’: Mental nurses and their patients, 1935–74.  ‘Curing queers’: Manchester University Press; 2015.
  9. Simpson P, Horne M, Brown LJE, Wilson CB, Dickinson T, Torkington K. Old(er) care home residents and sexual/intimate citizenship. Ageing and Society. 2017;37(2):243-65.
  10. Brown M, McCann E, Webster-Henderson B, Lim F, McCormick F, editors. The inclusion of LGBTQ+ health across the lifespan in pre-registration nursing programmes: qualitative findings from a mixed-methods study. Healthcare; 2023: MDPI.
  11. McAuliffe L, Bauer M, Fetherstonhaugh D, Chenco C. Assessment of sexual health and sexual needs in residential aged care. Australasian Journal on Ageing. 2015;34(3):183-8.
  12. Jones C, Moyle W, Van Haitsma K. Development of the ‘Intimacy and Sexuality Expression Preference’ tool for residential aged care. Geriatric Nursing. 2021;42(4):825-7.
  13. Jones C, Moyle W, Van Haitsma K, Hudson C. Utilization of the Intimacy and Sexuality Expression Preference tool in long-term care: a case study. Frontiers in Dementia. 2024;3:1270569.
  14. Bauer M, Fetherstonhaugh D, Tarzia L, Nay R, Wellman D, Beattie E. ‘I always look under the bed for a man’. Needs and barriers to the expression of sexuality in residential aged care: the views of residents with and without dementia. Psychology & Sexuality. 2013;4(3):296-309.
  15. Roelofs TS, Luijkx KG, Embregts PJ. Love, intimacy and sexuality in residential dementia care: a spousal perspective. Dementia. 2019;18(3):936-50.
  16. Mitchell G, McTurk V, Carter G, Brown-Wilson C. Emphasise capability, not disability: exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland. BMC Geriatrics. 2020;20(1).
  17. Appel J, Michels-Gaultieri M. The Resident and the Spouse and the Lover and the Ethicist: Considerations and Challenges in Nursing Home Romance. The Journal of Clinical Ethics. 2021;32(1):77-82.
  18. Ahmed A, Chesterton L, Ford MJ. Towards inclusiveness in dementia services for black and minoritised communities in the UK. Working with Older People. 2024.
  19. Hossain MZ, Khan HT. Barriers to access and ways to improve dementia services for a minority ethnic group in England. Journal of evaluation in clinical practice. 2020;26(6):1629-37.
  20. Baghirathan S, Cheston R, Hui R, Chacon A, Shears P, Currie K. A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished. Dementia. 2020;19(5):1672-91.
  21. Hossain M, Crossland J, Stores R, Dewey A, Hakak Y. Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence. Dementia. 2020;19(5):1441-73.
  22. Vandrevala T, Chrysanthaki T, Ogundipe E. “Behind closed doors with open minds?”: a qualitative study exploring nursing home staff’s narratives towards their roles and duties within the context of sexuality in dementia. International journal of nursing studies. 2017;74:112-9.

Unit 3

  1. Lipinska D. Dementia, Sex and Wellbeing: A Person-Centred Guide for People with Dementia, Their Partners, Caregivers and Professionals: Jessica Kingsley Publishers; 2017.
  2. Lipinska D, Heath H. Sexually speaking: person-centred conversations with people living with a dementia. Nursing older people. 2020;32(6).
  3. Roelofs TSM, Luijkx KG, Embregts PJCM. Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective. Clinical Gerontologist. 2021;44(3):288-98.
  4. Sandberg LJ. Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis. Sexual and Relationship Therapy. 2023;38(1):118-39.
  5. Grigorovich A, Kontos P, Heesters A, Martin LS, Gray J, Tamblyn Watts L. Dementia and sexuality in long-term care: Incompatible bedfellows? Dementia. 2022;21(4):1077-97.
  6. Dickinson t, Litvin,R., Horne,M., Brown Wilson, C., Simpson,P. and Hinchliff,S. Sexuality and Relationships in Later life  In: Ross FM, Harris R, Fitzpatrick JM, Abley C, editors. Redfern's nursing older people 5th ed. Glasgow: Elsevier Health Sciences; 2023.
  7. Wilson CB. Caring for people with dementia: a shared approach. London: Sage Publishing; 2017.
  8. Waterschoot K, Roelofs TS, van Dam A, Luijkx KG. Including personal boundaries scale: development and psychometric properties of a measurement for nurses' self-efficacy toward intimate and sexual behavior in dementia care. Frontiers in Dementia. 2024;3:1304438.
  9. Bauer M, Fetherstonhaugh D, Tarzia L, Nay R, Beattie E. Supporting residents’ expression of sexuality: the initial construction of a sexuality assessment tool for residential aged care facilities. BMC geriatrics. 2014;14:1-6.
  10. Villar F, Serrat R, Celdrán M, Fabà J, Martínez T, Twisk J. ‘I do it my way’: long-term care staff’s perceptions of residents’ sexual needs and suggestions for improvement in their management. European Journal of Ageing. 2020;17(2):197-205.
  11. Bauer M, Fetherstonhaugh D, Nay R, Tarzia L, Beattie E. Sexuality Assessment Tool (SexAT) for residential aged care facilities. Available from the Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne VIC. 2013;3086:3.