scholarly journals The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice)

Dementia ◽  
2017 ◽  
Vol 17 (2) ◽  
pp. 252-257 ◽  
Author(s):  
Emily Harrop ◽  
Annmarie Nelson ◽  
Helen Rees ◽  
Dylan Harris ◽  
Simon Noble
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers ◽  
Care Model ◽  
Structured Interviews ◽  
Project Staff ◽  
Mixed Methods Evaluation ◽  
People With Dementia ◽  
Audit Data

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.

scholarly journals ‘It’s like trying to ice a cake that’s not been baked’: a qualitative exploration of the contextual factors associated with implementing an evidence-based information intervention for family carers at the end of life

2020 ◽  
Vol 21 ◽  
Author(s):  
Amy Mathieson ◽  
Karen Luker ◽  
Gunn Grande
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Evidence Based ◽  
Management Support ◽  
Life Care ◽  
Care Providers ◽  
Family Carers ◽  
Structured Interviews ◽  
Practice Development

Abstract Aim: To explore the introduction of an evidence-based information intervention – the ‘Caring for Someone with Cancer’ booklet – within home care and end-of-life care, to inform future implementation and practice development within this setting. Background: Family carers’ contribution is crucial to enable care and death of people at home. The ‘Caring for Someone with Cancer’ booklet received positive responses from family carers and District Nurses and is an evidence-based intervention designed to support carers to deliver basic nursing tasks. Further feasibility work was required to establish how it should be implemented. Little is known about how to successfully translate interventions into practice, particularly within home care settings and end-of-life care. Methods: Implementation of the ‘Caring for Someone with Cancer’ booklet, utilising a qualitative case study approach, in four home care sites. Semi-structured interviews, informed by Normalization Process Theory (NPT), were undertaken at implementation sites in May 2016–June 2017. Participants were generalist and specialist nurses, managers, and Healthcare Assistants (HCAs). A framework approach to analysis was adopted. Findings: Forty-five members of staff participated. Failed implementation was associated with organisational-level characteristics and conditions, including workforce composition and predictability of processes. Unstable work environments meant home care providers focused on short-term rather than long-term goals, precluding practice development. Staff’s perceptions of the time available to engage with and implement the intervention inhibited adoption, as many participants were “just getting through the day”. Implementation was successful in sites with explicit management support, including proactive implementation attempts by managers, which legitimatised the change process, and if all staff groups were engaged. To encourage uptake of evidence-based interventions in home care settings, practitioners should be given opportunities to critically reflect upon taken-for-granted practices. Future implementation should focus on work pertaining to the NPT construct ‘Collective Action’, including how staff interact and build confidence in new practices.

scholarly journals Developing an applied model for making decisions towards the end of life about care for someone with dementia

PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0252464
Author(s):  
Nathan Davies ◽  
Tanisha De Souza ◽  
Greta Rait ◽  
Jessica Meehan ◽  
Elizabeth L. Sampson
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Plan ◽  
Decision Making Process ◽  
Life Care ◽  
Family Carers ◽  
Modified Model ◽  
People With Dementia ◽  
Advance Care

Background Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. Aim Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. Methods Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. Results Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. Conclusions The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

scholarly journals End-of-life care: A qualitative study comparing the views of people with dementia and family carers

2017 ◽  
Vol 32 (3) ◽  
pp. 631-642 ◽  
Author(s):  
Marie Poole ◽  
Claire Bamford ◽  
Emma McLellan ◽  
Richard P Lee ◽  
Catherine Exley ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers ◽  
People With Dementia

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.

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