Objectives: A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care. Design: Qualitative in-depth interviews with bereaved informal carers of people with dementia. Setting: United Kingdom. Participants: Forty bereaved carers -31 women and nine men -with an age range of 18-86 years and from wide socioeconomic backgrounds participated. Main outcome measures: Experiences of carers of care for person with dementia during last year of life. Results: The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices. Conclusion: The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settingsexamples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.
Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.
There are different groups in society who may be considered vulnerable, for example those experiencing mental or physical health issues, learning disabilities, prisoners or children. There are, however, other groups in society who may also be regarded as vulnerable, such as those who are bereaved. Vulnerability in relation to the bereaved occurs as a result of experiencing a normal life event, death or a loss. In this situation vulnerability may be transient and, depending upon the management of the bereavement, generally temporary. Unlike the aforementioned groups, participants required for this type of research (bereavement, death and dying) are able to consent themselves into projects, and the capacity to do so is not an issue. Undertaking research with those who may be considered vulnerable into sensitive, emotive topics such as death and dying can create difficulties for the National Research Ethics Service (NRES), making it difficult to get approval for such studies. It appears that the ethical issues are concerned with not wishing to cause distress to participants when asked for research purposes to recollect what for some may have been emotionally challenging and traumatic events. The article offers a narrative, reflective account of the above from several perspectives: being employed as a contract researcher in a university; having experience of being an active member of a National Health Service Research Ethics Committee; and later assuming the role of full-time postgraduate (PhD) student requiring ethical approval to undertake research with what may be considered a vulnerable group involving a sensitive and
It is estimated that there are 35.6 million people with dementia worldwide and this is projected to increase to over 115 million by the year 2050. Dementia is a progressive neurodegenerative disease that significantly reduces survival. End-of-life care received by this group is often poor and does not equate to that offered in other life limiting illnesses.This review highlights results from a large UK study of informal carers of people with dementia to explore what are determinants of care for people with dementia and their family carers. New perspectives as to models of care for end-of-life care for patients with dementia are discussed together with how these may be implemented and delivered within wider community settings and contexts, where many people with dementia may be cared for in the future.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2025 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.