Hostname: page-component-f554764f5-c4bhq Total loading time: 0 Render date: 2025-04-15T13:05:11.172Z Has data issue: false hasContentIssue false
  • English
  • Français

Through their eyes: informal carers’ experiences of supporting a person with dementia on an NHS mental health inpatient ward

Published online by Cambridge University Press:  03 April 2025

Hannah Partridge Open the ORCID record for Hannah Partridge [Opens in a new window] ,
John Keady Open the ORCID record for John Keady [Opens in a new window]  and
Lydia Morris Open the ORCID record for Lydia Morris [Opens in a new window]
Hannah Partridge*
Affiliation:
Division of Psychology, University of Manchester, Manchester, UK Greater Manchester Mental Health NHS Foundation Trust, Prestwich, UK
John Keady
Affiliation:
Greater Manchester Mental Health NHS Foundation Trust, Prestwich, UK Division of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK
Lydia Morris
Affiliation:
Division of Psychology, University of Manchester, Manchester, UK
*
Corresponding author: Hannah Partridge; Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

In the UK, when people with dementia are regarded as a risk to themselves or others, they are usually admitted compulsorily onto a National Health Service dementia inpatient ward, under the 1983 Mental Health Act. Remarkably little is known about the experiences of informal (family) carers supporting these individuals with dementia during their stay; this study is the first to explore those experiences.

Qualitative, semi-structured interviews with 12 informal carers with a family member admitted to an NHS dementia inpatient ward in the Northwest of England were analysed. The reflexive thematic analysis identified 4 main themes – (1) Initial adjustment and transition; (2) Becoming a visitor; (3) Receiving support and sharing expertise; (4) Planning for the future – and 15 sub-themes. Some carers experienced traumatic events in the build-up to admission and felt overwhelmed, worried, guilty and stressed during the stay, whilst others felt relieved that the person with dementia was no longer at home. The ward environment was regarded as safe and practical, albeit ‘stark’. Staff care was seen as high-quality; carers appreciated support, when available, from a range of care staff and carer groups. Communication with ward staff was reported as ‘mixed’; positives were receiving information leaflets, attending ward rounds and having informal conversations with staff. Carers often felt excluded from future care planning.

Preliminary suggestions for practice and policy recommendations include enhanced informal carer support during the admission, improved communication with ward staff, making the ward environment accessible and ‘homely’, and explaining staffing levels prior to admission.

Keywords

carerdementia inpatient wardMental Health Act 1983transitionsvisitor
Type
Article
Information
Ageing & Society , First View , pp. 1 - 27
Copyright
© The Author(s), 2025. 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.)

Article purchase

Temporarily unavailable

References

Alzheimer’s Society (2020) Women’s Unpaid Dementia Care and the Impact on Employment. London: Alzheimer’s Society. Available at www.alzheimers.org.uk/sites/default/files/2020-04/Womens-unpaid-dementia-care-and-the-impact-on-employment.pdf (accessed 27 January 2025).Google Scholar
Bailey, S, Scales, K, Lloyd, J, Schneider, J and Jones, R (2013) The emotional labour of health-care assistants in inpatient dementia care. Ageing & Society 35, 246–269. https://doi.org/10.1017/s0144686x13000573.CrossRefGoogle Scholar
Braun, V and Clarke, V (2019) Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health 11, 589–597. https://doi.org/10.1080/2159676x.2019.1628806.Google Scholar
Braun, V and Clarke, V (2020) Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern‐based qualitative analytic approaches. Counselling and Psychotherapy Research 21, 37–47. https://doi.org/10.1002/capr.12360.Google Scholar
Bressan, V, Visintini, C and Palese, A (2020) What do family caregivers of people with dementia need? A mixed‐method systematic review. Health and Social Care in the Community 28, 1942–1960. https://doi.org/10.1111/hsc.13048.CrossRefGoogle Scholar
Brooks, D, Beattie, E, Fielding, E, Wyles, K and Edwards, H (2021) Long-term care placement: The transitional support needs and preferences of spousal dementia caregivers. Dementia: The International Journal of Social Research and Practice 21, 794–809. https://doi.org/10.1177/14713012211056461.Google ScholarPubMed
Burnham, J (2018) Developments in social GRRRAAACCEEESSS: Visible–invisible and voiced–unvoiced. In Krause, I-B (ed.), Culture and Reflexivity in Systemic Psychotherapy: Mutual Perspectives. Abingdon: Routledge, pp. 139–160.CrossRefGoogle Scholar
Byrne, D (2021) A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Quality and Quantity 56, 1391–1412. https://doi.org/10.1007/s11135-021-01182-y.Google Scholar
Cheng, ST, Li, KK, Losada, A, Zhang, F, Au, A, Thompson, LW and Gallagher-Thompson, D (2020) The effectiveness of nonpharmacological interventions for informal dementia caregivers: An updated systematic review and meta-analysis. Psychology and Aging 35, 55–77. https://doi.org/10.1037/pag0000401.CrossRefGoogle ScholarPubMed
Cottrell, L, Duggleby, W, Ploeg, J, McAiney, C, Peacock, S, Ghosh, S, Holroyd-Leduc, JM, Nekolaichuk, C, Forbes, D, Paragg, J and Swindle, J (2018) Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes. Aging and Mental Health 24, 227–232. https://doi.org/10.1080/13607863.2018.1531369.CrossRefGoogle ScholarPubMed
Dementia, UK (2023) Mental health ward admissions for people with dementia. Dementia UK, June. Available at www.dementiauk.org/information-and-support/health-advice/mental-health-ward-admissions-for-people-with-dementia/ (accessed 27 January 2025).Google Scholar
Department of Health (1983) Mental Health Act 1983. Legislation.gov.uk. Available at www.legislation.gov.uk/ukpga/1983/20/contents (accessed 27 January 2025).Google Scholar
Department of Health (2012) Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015. London: UK Government Department of Health. Available at https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf (accessed 27 January 2025).Google Scholar
Department of Health (2015) Prime Minister’s challenge on dementia 2020. Department of Health, 21 February. Available at www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020 (accessed 27 January 2025).Google Scholar
Department of Health (2016) Prime Minister’s Challenge on Dementia 2020: Implementation Plan. London: UK Government Department of Health. Available at https://assets.publishing.service.gov.uk/media/5a816d6040f0b62305b8ee55/PM_Dementia-main_acc.pdf (accessed 27 January 2025).Google Scholar
Francis, N and Hanna, P (2020) Informal carer experiences of UK dementia services – a systematic review. Journal of Psychiatric and Mental Health Nursing 29, 116–129. https://doi.org/10.1111/jpm.12698.Google ScholarPubMed
Gaugler, JE, Anderson, KA, Zarit, SH and Pearlin, LI (2004) Family involvement in nursing homes: Effects on stress and well-being. Aging and Mental Health 8, 65–75. https://doi.org/10.1080/13607860310001613356.CrossRefGoogle ScholarPubMed
Gough, B and Madill, A (2012) Subjectivity in psychological science: From problem to prospect. Psychological Methods 17, 374–384. https://doi.org/10.1037/a0029313.Google ScholarPubMed
Graneheim, UH, Johansson, A and Lindgren, B (2014) Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: Insights from a meta‐ethnographic study. Scandinavian Journal of Caring Sciences. 28, 215–224. https://doi.org/10.1111/scs.12046.CrossRefGoogle ScholarPubMed
Gray, KL, Moniz‐Cook, E, Reichelt, K, Duffy, F and James, IA (2021) Professional perspectives on applying the NICE and British Psychological Society guidelines for the management of behaviours that challenge in dementia care: An e‐survey. British Journal of Clinical Psychology 61, 112–131. https://doi.org/10.1111/bjc.12316.Google ScholarPubMed
Gridley, K, Brooks, J, Birks, Y, Baxter, K and Parker, G (2016) Improving care for people with dementia: Development and initial feasibility study for evaluation of life story work in dementia care. Health Services and Delivery Research 4, 1–298. https://doi.org/10.3310/hsdr04230.CrossRefGoogle Scholar
Hayward, JK, Gould, C, Palluotto, E, Kitson, EC and Spector, A (2021) Family involvement with care homes following placement of a relative living with dementia: A review. Ageing & Society 43, 1530–1575. https://doi.org/10.1017/s0144686x21000957.CrossRefGoogle Scholar
Hayward, JK, Gould, C, Palluotto, E, Kitson, E, Fisher, ER and Spector, A (2021) Interventions promoting family involvement with care homes following placement of a relative with dementia: A systematic review. Dementia: The International Journal of Social Research and Practice 21, 618–647. https://doi.org/10.1177/14713012211046595.CrossRefGoogle ScholarPubMed
Health and Social Care Committee (2021) Supporting People with Dementia and Their Carers. Seventh Report of Session 2021–22. London: House of Commons. Available at https://committees.parliament.uk/publications/7662/documents/79983/default/ (accessed 27 January 2025).Google Scholar
Health Research Authority, (2021) UK Policy Framework for Health and Social Care Research. Available at www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/uk-policy-framework-health-and-social-care-research/ (accessed 27 January 2025).Google Scholar
Hoek, LJ, van Haastregt, JC, de Vries, E, Backhaus, R, Hamers, JP and Verbeek, H (2021) Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff? Dementia: The International Journal of Social Research and Practice 20, 1631–1648. https://doi.org/10.1177/1471301220962235.CrossRefGoogle ScholarPubMed
Johansson, A, Ruzin, HO, Graneheim, UH and Lindgren, BM (2014) Remaining connected despite separation – Former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home. Aging and Mental Health 18, 1029–1036. https://doi.org/10.1080/13607863.2014.908456.Google ScholarPubMed
Johl, N, Patterson, T and Pearson, L (2014) What do we know about the attitudes, experiences and needs of black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings. Dementia: The International Journal of Social Research and Practice 15, 721–742. https://doi.org/10.1177/1471301214534424.Google ScholarPubMed
Jones, L, Cullum, N, Watson, R and Keady, J (2022) Introducing the ‘3F’s model of complexity’ for people with dementia accessing an NHS mental health inpatient dementia assessment ward: An interpretive description study. Dementia: The International Journal of Social Research and Practice 22, 85–104. https://doi.org/10.1177/14713012221136313.CrossRefGoogle Scholar
Jones, L, Cullum, N, Watson, R, Thompson, J and Keady, J (2024) ‘Only my family can help’: The lived experience and care aesthetics of being resident on an NHS psychiatric/mental health inpatient dementia assessment ward – A single case study. Ageing & Society, published online 27 March 2024. https://doi.org/10.1017/s0144686x24000096.Google Scholar
Lee, K, Chung, J, Meyer, KN and Dionne-Odom, JN (2022) Unmet needs and health-related quality of life of dementia family caregivers transitioning from home to long-term care: A scoping review. Geriatric Nursing 43, 254–264. https://doi.org/10.1016/j.gerinurse.2021.12.005.CrossRefGoogle ScholarPubMed
Lindeza, P, Rodrigues, M, Costa, J, Guerreiro, M and Rosa, MM (2020). Impact of dementia on informal care: A systematic review of family caregivers’ perceptions. BMJ (British Medical Journal) Supportive and Palliative Care. https://doi.org/10.1136/bmjspcare-2020-002242.Google ScholarPubMed
Lloyd, VJ, Schneider, J, Scales, K, Bailey, S and Jones, R (2011) Ingroup identity as an obstacle to effective multiprofessional and interprofessional teamwork: Findings from an ethnographic study of healthcare assistants in dementia care. Journal of Interprofessional Care 25, 345–351. https://doi.org/10.3109/13561820.2011.567381.CrossRefGoogle Scholar
Malterud, K, Siersma, VD and Guassora, AD (2016) Sample size in qualitative interview studies. Qualitative Health Research 26, 1753–1760. https://doi.org/10.1177/1049732315617444.Google ScholarPubMed
Miah, J, Parsons, S, Lovell, K, Starling, B, Leroi, I and Dawes, P (2020) Impact of involving people with dementia and their care partners in research: A qualitative study. BMJ (British Medical Journal) Open, 10. https://doi.org/10.1136/bmjopen-2020-039321.Google ScholarPubMed
Murphy, SA, Osborne, H and Smith, I (2013) Psychological consultation in older adult inpatient settings: A qualitative investigation of the impact on staff’s daily practice and the mechanisms of change. Aging and Mental Health 17, 441–448. https://doi.org/10.1080/13607863.2013.765829.CrossRefGoogle ScholarPubMed
National Health Service (2019) The NHS Long Term Plan. Available at www.longtermplan.nhs.uk/ (accessed 27 January 2025).Google Scholar
National Institute of Health and Clinical Excellence (2018) Dementia: Assessment, Management and Support for People Living with Ddementia and Their Carers. NICE Guideline: NG97. London: National Institute for Health and Care Excellence. Available at www.nice.org.uk/guidance/ng97 (accessed 27 January 2025).Google Scholar
Pertl, MM, Sooknarine-Rajpatty, A, Brennan, S, Robertson, IH and Lawlor, BA (2019) Caregiver choice and caregiver outcomes: A longitudinal study of Irish spousal dementia caregivers. Frontiers in Psychology 10. https://doi.org/10.3389/fpsyg.2019.01801.CrossRefGoogle ScholarPubMed
Pinner, G, Hillam, J, Branton, T and Ramakrishnan, A (2011) In-Patient Care for Older People within Mental Health Services. Faculty of the Psychiatry of Old Age, report FR/OA/I. London: Royal College of Psychiatrists. Available at https://silo.tips/download/in-patient-care-for-older-people-within-mental-health-services (accessed 27 January 2025).Google Scholar
QSR International (now part of Lumivero) (2018) NVivo qualitative data analysis software (Version 12). Available at https://lumivero.com/products/nvivo/ (accessed 10 March 2025).Google Scholar
Rose, V, Stewart, I, Jenkins, KG, Tabbaa, L, Ang, CS and Matsangidou, M (2021) Bringing the outside in: The feasibility of virtual reality with people with dementia in an inpatient psychiatric care setting. Dementia: The International Journal of Social Research and Practice 20, 106–129. https://doi.org/10.1177/1471301219868036.Google Scholar
Shanley, I, Ghoneim, F, Attanayake, N, Ford, J, Kutraite, A, Nkungu, T and Maccabe, E (2023) Improving physical health monitoring on an inpatient dementia assessment unit – A quality improvement project. BJPsych (British Journal of Psychiatry) Open, 9, S109. https://doi.org/10.1192/bjo.2023.316.CrossRefGoogle Scholar
Whitlatch, CJ and Orsulic-Jeras, S (2018) Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers. Gerontologist. 58, 58–73. https://doi.org/10.1093/geront/gnx162.Google ScholarPubMed
Wilson, LS, Devitt, P and Hally, O (2015) Standards of prescription writing in a long-term psychogeriatric unit: A series of clinical audits. Irish Journal of Psychological Medicine 32, 197–204. https://doi.org/10.1017/ipm.2014.58.CrossRefGoogle Scholar
Wolverson, E, Dunning, R, Crowther, G, Russell, G and Underwood, BR (2024) The characteristics and outcomes of people with dementia in inpatient mental health care: A review. Clinical Gerontology 47, 684–703. https://doi.org/10.1080/07317115.2022.2104145.Google ScholarPubMed
Wolverson, EL, Dening, KH, Dunning, R, Crowther, G, Russell, G and Underwood, BR (2023) Family experiences of inpatient mental health care for people with dementia. Frontiers in Psychiatry 14. https://doi.org/10.3389/fpsyt.2023.1093894.Google ScholarPubMed
World Health Organization (2023) Dementia. World Health Organization, 15 March. Available at www.who.int/news-room/fact-sheets/detail/dementia (accessed 27 January 2025).Google Scholar
Supplementary material: File

Partridge et al. supplementary material

Partridge et al. supplementary material
Download Partridge et al. supplementary material(File)
File 22.7 KB