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

Objective: To analyze and compare the knowledge and opinions of registered dietitian nutritionists (RDNs) about artificial nutrition and hydration (ANH) in a terminal illness. Beliefs of speech-language pathologists (SLPs) were also considered and compared against RDN data. Methods: This is a descriptive analysis utilizing survey responses from RDNs and SLPs regarding ANH in a case study patient with advanced dementia. Results: There was a strong belief among RDNs that ANH at end of life (EOL) would improve nutritional status, although a correlation was found between those in favor of ANH and believing it was ethical to withhold ANH at EOL (R2 = 0.109, p = 0.002). Responses indicated that SLPs need more education regarding ANH techniques, while RDNs felt ANH would improve aspiration risk. Place of employment, religion and age of respondents were also found to impact beliefs. Conclusion: Clinicians, specifically RDNs, working with patients at EOL need more evidenced-based education on the risks and benefits of ANH. Decisions regarding care of patients at EOL should be void of clinicians’ personal bias which may affect ethical treatment in the clinical setting. Further controlled trials must be performed before claims can be made regarding ANH at EOL.

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Defining end of life in dementia: A systematic review

Palliative Medicine ◽

10.1177/02692163211025457 ◽

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.

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End-of-life care and bereavement: effect on family carers

The Lancet Neurology ◽

10.1016/s1474-4422(04)00677-5 ◽

2004 ◽

Vol 3 (3) ◽

pp. 144 ◽

Cited By ~ 3

Author(s):

Ladislav Volicer

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Family Carers

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

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2017-001317 ◽

2017 ◽

Vol 9 (1) ◽

pp. e4-e4 ◽

Cited By ~ 2

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.

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Ten Errors Regarding End of Life Issues, and Especially Artificial Nutrition and Hydration

Philosophy and Medicine - Artificial Nutrition and Hydration ◽

10.1007/978-1-4020-6207-0_13 ◽

2007 ◽

pp. 213-226 ◽

Cited By ~ 2

Author(s):

Christopher Tollefsen

Keyword(s):

End Of Life ◽

Artificial Nutrition ◽

Artificial Nutrition And Hydration ◽

Life Issues ◽

Nutrition And Hydration ◽

End Of Life Issues

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When a Little May Be Just Enough? Caring for People With Swallowing Difficulties at the End of Life, and Their Caregivers

Perspectives of the ASHA Special Interest Groups ◽

10.1044/persp1.sig13.89 ◽

2016 ◽

Vol 1 (13) ◽

pp. 89-93 ◽

Cited By ~ 1

Author(s):

Justin Roe ◽

Rob George

Keyword(s):

End Of Life ◽

Specialist Palliative Care ◽

Loved One ◽

Dying Patients ◽

Present Information ◽

Swallowing Difficulties ◽

Nutritional Needs ◽

Nutrition And Hydration ◽

Meaningful Role

Nutrition and hydration are emotive topics in many fields of health care. This can present particular challenges towards the end of life where reduced hydration and nutritional needs are a natural part of dying. Speech-language pathologists (SLPs) are increasingly involved in the care of dying patients. It is essential that they work as part of a dedicated, multidisciplinary team delivering a comprehensive package of specialist palliative care. In this paper, we will review the role of the SLP at the end of life and present information that will support the SLP to recognise and understand dying, and how medical and SLP interventions may compound rather than relieve symptoms. It is paramount that interventions are ethically sound and decision making is shared, respecting the autonomy of patients. In the event patients lack capacity, any advance directives/decisions and statements should be considered in consultation with caregivers. At the end of life, the focus of our intervention may shift from the patient to the caregiver, ensuring that they have a meaningful role in the care of their loved one in the final stages of dying.

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