scholarly journals Perceived needs for support among care home staff providing end of life care for people with dementia: a qualitative study

2016 ◽  
Vol 32 (2) ◽  
pp. 155-163 ◽  
Author(s):  
T. Vandrevala ◽  
K. Samsi ◽  
C. Rose ◽  
C. Adenrele ◽  
C. Barnes ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Life Care ◽  
Perceived Needs ◽  
Care Home Staff ◽  
People With Dementia

End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners

2012 ◽  
Vol 2 (Suppl 1) ◽  
pp. A23.1-A23 ◽  
Author(s):  
Caroline Nicholson ◽  
Claire Goodman ◽  
Elspeth Mathie ◽  
Sarah Amador ◽  
Natasha Baron ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Life Care ◽  
Care Home Staff ◽  
People With Dementia ◽  
Collaborative Working

scholarly journals A qualitative comparison of care home staff and palliative care specialists’ experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study

2021 ◽  
pp. 026921632110433
Author(s):  
Melanie Handley ◽  
Deborah Parker ◽  
Frances Bunn ◽  
Claire Goodman
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
Term Care ◽  
Sustainable Solutions ◽  
Care Home Staff ◽  
People With Dementia

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists ( n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.

scholarly journals Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

2013 ◽  
Vol 106 (12) ◽  
pp. 492-497 ◽  
Author(s):  
Jacqueline Crowther ◽  
Kenneth CM Wilson ◽  
Siobhan Horton ◽  
Mari Lloyd-Williams
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
People With Dementia

Older people dying with dementia: a nationwide study

2012 ◽  
Vol 24 (10) ◽  
pp. 1581-1591 ◽  
Author(s):  
Koen Meeussen ◽  
Lieve Van den Block ◽  
Michael Echteld ◽  
Nicole Boffin ◽  
Johan Bilsen ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Elderly People ◽  
Cognitive Abilities ◽  
End Of Life Care ◽  
Large Scale ◽  
Care Home ◽  
Life Care ◽  
Early Palliative Care ◽  
People With Dementia

ABSTRACTBackground: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia.Methods: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients’ physical and cognitive abilities.Results: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP–patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%).Conclusions: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

End of life care education to care home staff: an evaluation

2016 ◽  
Vol 18 (7) ◽  
pp. 369-374 ◽  
Author(s):  
Jan Dobie ◽  
Marlis Plumb ◽  
Sarah Shepherd
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Life Care ◽  
Care Education ◽  
Care Home Staff

scholarly journals What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Claire Bamford ◽  
Richard Lee ◽  
Emma McLellan ◽  
Marie Poole ◽  
Karen Harrison-Dening ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
People With Dementia ◽  
Key Stakeholders

scholarly journals Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Successful Implementation ◽  
Life Care ◽  
Care Home Staff ◽  
Palliative Care Teams ◽  
The Uk

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.

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