A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales
Open accessAbstract
In general hospitals, decisions are routinely made by health and social care professionals to discharge older people with dementia, who lack capacity, into long-term institutional care. There are few independent procedural safeguards that monitor how those professional ‘best interests’ decisions are made. Instead there is an assumption, implied by the Mental Capacity Act 2005 (MCA), which governs decision-making on behalf of incapacitated adults in England and Wales, that relatives will act as informal caretakers of patients’ interests and will challenge professional decisions where necessary. This article examines whether this is the case in practice and the factors that may prevent relatives from carrying out this safeguarding role effectively. Our findings stem from a qualitative (ethnographic) study which captured observational data on acute and rehabilitation hospital wards in two hospitals within two NHS healthcare trusts in the North East of England. Our results show that relatives struggled to safeguard the rights of incapacitated patients with dementia when professional residence capacity and best-interests decisions were made about living arrangements and relatives were often ill-equipped or unsuitable to carry out this safeguarding role. Without better information-sharing and more robust independent procedural safeguards in the MCA, the rights of older patients with dementia are not being adequately protected during the hospital discharge process.
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Just two of the studies elicited perspectives of people living with dementia.
“Just two of the studies elicited perspectives of people living with dementia [31, 32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
Health and social care professionals fail to communicate adequately with the person with dementia about discharge planning and outcomes.
“Health and social care professionals fail to communicate adequately with the person with dementia about discharge planning and outcomes [31–33].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
Families often filled the gaps in the care system and were noted to be actively involved in providing advocacy, facilitating communication, helping with personal care, providing much needed stimulation and helping to prepare the environment.
“Families often filled the gaps in the care system and were noted to be actively involved in providing advocacy, facilitating communication, helping with personal care, providing much needed stimulation and helping to prepare the environment [30, 32, 35].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
Five studies included the perspective of family members and four studies sought the views of health and social care professionals.
“Using interviews and or focus groups, five studies included the perspective of family members [28–30, 32, 35, 36] and four studies sought the views of health and social care professionals [32–34, 36].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
For family members, being insufficiently prepared for being involved in discharge meetings undermined their ability to give an informed opinion about discharge decisions.
“For family members, being insufficiently prepared for being involved in discharge meetings undermined their ability to give an informed opinion about discharge decisions [32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
An example cited by Emmett et al. describes the anger felt by a patient who was excluded from decision-making about her future care needs.
“An example cited by Emmett et al. describes the anger felt by a patient who was excluded from decision-making about her future care needs [32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
Family carers found the time leading up to discharge within the hospital environment, the associated decision making about moving into a care facility, and the care processes and systems particularly stressful.
“Family carers found the time leading up to discharge within the hospital environment, the associated decision making about moving into a care facility, the care processes and systems particularly stressful. [28–30, 32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
Tension and family conflict about decisions were common, and conflicts of interests between patients and relatives regarding funding care were noted.
“Tension and family conflict about decisions were common [30] and conflicts of interests between patients and relatives regarding funding care were noted [32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
The lack of family involvement and exclusion in decision making led family members to feel frustrated and unappreciated.
“The lack of family involvement and exclusion in decision making led family members to feel frustrated and unappreciated [32].”
From Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review (2019) · cites this paper as [32]
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- Self-citation
- Authors
- Emmett, C., Poole, M., Bond, J., & Hughes, J. C.
- Affiliations
- Northumbria University (GB)
- Newcastle University (GB)
- North Tyneside General Hospital (GB)
- Venue
- International Journal of Law, Policy and the Family
- Publisher
- Oxford University Press (OUP)
- Published
- 2014-10-30
- Volume
- 28
- Issue
- 3
- Pages
- 302-320
- ISSN
- 0950-4109 (ISSN-L)
- 1360-9939
- 1464-3707
- OpenAlex
- W2156495373
- Cited by
- 14
- References
- 31
- Citations by year
- 2025: 2 · 2024: 1 · 2020: 1 · 2019: 3 · 2018: 3 · 2017: 1 · 2015: 3
- FWCI
- 1.57
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- International Journal of Law Policy and the Family (publishedVersion)
- Northumbria Research Link (Northumbria University) (acceptedVersion)
- Explore Bristol Research (submittedVersion)
- Newcastle University ePrints (Newcastle Univesity)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia, hospital discharge, family caregivers, Mental Capacity Act 2005, capacity shortage, long-term institutional care, procedural guarantees, information sharing, older adults, patient rights
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