A UK qualitative study of living and dying with dementia in the last year of life.

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18-86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences.

Palliative care for people with advanced major neuro-cognitive disorders.

Major neuro-cognitive disorders are life-limiting illnesses. However, unlike other life-limiting illnesses, the disease trajectory is often long, protracted and unpredictable. Prognostication of end of life can be problematic and access to specialist palliative care services, including hospice, are limited, variable and inequitable, resulting in negative experiences at this time. Major neuro-cognitive disorders will be discussed initially in broad terms, considering the most common types and symptoms. Palliative and end-of-life care, including legal and ethical issues, are addressed and awareness raised of different types of major neuro-cognitive disorders, common symptoms and common nursing problems associated with major neuro-cognitive disorders at end of life. The needs of family and lay caregivers, who form an important part of the overall experience of major neuro-cognitive disorders, are also highlighted. Advance Care Planning is an important part of end-of-life care. Some of the challenges involved in facilitating Advanced Care Planning (ACP) with people with major neuro-cognitive disorders and caregivers are also considered. The need for palliative care practitioners to recognise the individuality of the patient and be aware that not all patients experiencing major neuro-cognitive disorders share the same set of symptoms, as in other life limiting illnesses, is also highlighted. It is important for specialist palliative care practitioners to recognise the transferability of existing knowledge, skills and expertise to the care of people with advanced major neuro-cognitive disorders as end of life approaches. Collaboration, partnership and the sharing of knowledge and skills is crucial to the development of good end-of-life care for people with these conditions, development of the workforce and the creation of positive experiences and subsequent memories after death.

Supportive and palliative care for patients with chronic mental illness including dementia.

PURPOSE OF REVIEW: People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. RECENT FINDINGS: The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. SUMMARY: 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.

Compassion in healthcare - lessons from a qualitative study of the end of life care of people with dementia.

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 settings - examples 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.