scholarly journals O-4  Enabling successful hospital discharge to home at end-of-life: how can we support family carers?

2016 ◽  
Author(s):  
Gail Ewing ◽  
Lynn Austin ◽  
Debra Gibson ◽  
Gunn Grande
Keyword(s):  
End Of Life ◽  
Hospital Discharge ◽  
Family Carers ◽  
Support Family

scholarly journals A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

2021 ◽  
Author(s):  
Nathan Davies ◽  
Elizabeth L. Sampson ◽  
Emily West ◽  
Tanisha DeSouza ◽  
Jill Manthorpe ◽  
...  
Keyword(s):  
End Of Life ◽  
Decision Aid ◽  
Family Carers ◽  
Support Family

scholarly journals Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

2017 ◽  
Vol 9 (1) ◽  
pp. e4-e4 ◽  
Author(s):  
Glenys Caswell ◽  
Beth Hardy ◽  
Gail Ewing ◽  
Sheila Kennedy ◽  
Jane Seymour
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
End Of Life ◽  
Third Sector ◽  
Training Programme ◽  
Family Carers ◽  
Participatory Action ◽  
Health And Social Care ◽  
Carer Support ◽  
Support Family

BackgroundFamily carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.ObjectivesTo produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.Process of developmentParticipatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.Final training programmeThe outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator’s notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.ConclusionThe programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

scholarly journals Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Narin Aker ◽  
Emily West ◽  
Nathan Davies ◽  
Kirsten J. Moore ◽  
Elizabeth L. Sampson ◽  
...  
Keyword(s):  
End Of Life ◽  
Care Home ◽  
Care Transitions ◽  
Support Line ◽  
Telephone Support ◽  
Family Carers ◽  
Structured Interviews ◽  
Line Staff ◽  
Home Placement ◽  
Support Family

Abstract Background People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

scholarly journals 14 Development of a resource for family carers of people living with dementia with nutrition and hydration difficulties towards the end-of-life

2021 ◽  
Author(s):  
Yolanda Barrado-Martín ◽  
Pushpa Nair ◽  
Kanthee Anantapong ◽  
Kirsten J Moore ◽  
Christina H Smith ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Carers ◽  
Nutrition And Hydration

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

scholarly journals Me & My Wishes Videos: Congruence of End-of-Life Preferences Between Residents With Dementia, Family, and Staff

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Sarah Neller ◽  
Gail Towsley ◽  
Bob Wong
Keyword(s):  
End Of Life ◽  
Life Support ◽  
Medical Intervention ◽  
Treatment Preferences ◽  
Term Care ◽  
Comparison Groups ◽  
Preferences For Care ◽  
Baseline Health ◽  
Support Family

Abstract Me & My Wishes are person-centered videos of long term care residents (ages 65-95) living with dementia discussing their preferences for care including end-of-life (EOL) medical intervention. We evaluated the congruence of six EOL treatment preferences between the residents’ personal videos, medical records (e.g. advance directive), and surveys of family (n= 49) and staff (n=37; 118 responses) knowledge of their preferences. Results were highly discordant. Treatments with the most discordance when comparing videos to comparison groups were IV fluids (medical record, 57.1%) and life support (family, 69.4%; staff, 82.2%). Residents reported EOL treatments were considered acceptable if they were temporary, would relieve suffering, or enabled a return to baseline health. These caveats may lead to discordance if they are not conveyed to family or staff. Our findings highlight the need for conversations among residents living with dementia and their caregivers to improve understanding, congruence and adherence of resident EOL preferences.

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