From: Improving end-of-life care for people with dementia: a mixed-methods study
 | Healthcare professionals | Carers | Workshop themes | Convergence or divergence | ||
---|---|---|---|---|---|---|
Areas for improvement | Survey example | Interview themes | Survey example | Interview themes | ||
Timely recognition of end of life | 54.0% of respondents agreed that their workplace/ward recognised dementia as a terminal condition in a timely manner | 1) Prognostication is tricky, and end of life is not always recognised and discussed | 40.4% of carers said the person knew they were going to die, 43.9% said no, and 15.8% were not sure | 1) Discussions about death usually happen at the end | 1) Creating resources for end of life for care professionals to use in different care settings | Convergence |
Conversations about end of life | 61.9% agreed their workplace/ward had a culture of open discussion about death and dying | When asked if the person who told them they were likely to die broke the news in a sensitive and caring way, 45.6% of carers said this did not apply as they did not know they were dying, or they did not tell them (24.6%). Only 17.5% said yes, and 3.5% said no | 2) Having early conversations about end of life | Convergence | ||
Information and support for people with dementia and carers | Free text comment: “More open discussions with patients and families about stage of dementia and preparing for end-of-life care.” | 2) People with dementia, family and carers lack information and support | In the last two days of the care recipient’s life, 74.4% of carers agreed they had a supportive relationship with healthcare professionals | 2) Caring is challenging 3) Knowledge and understanding of dementia and end of life | 3) Increasing education and support available to carers | Overall convergence with some divergence |
Person and carer centred care | Free text comment: “More collaborative approach with the staff and family altogether rather than just medical team.” | 3) Quality end-of-life care involves managing symptoms, maintaining dignity and comfort care | 71.9% of carers said they were involved in decisions about care as much as they wanted to be | 4) People’s experiences with dementia differ | 4) Improving communication and consultation with carers | Overall convergence with some divergence |
Accessing quality, coordinated care | 54.4% of respondents agreed if they had a dying relative in hospital, they would feel confident in the excellent quality of care that could be delivered in their workplace/on their ward | 64.3% of carers rated the care provided in the last three months of the life of the person they cared for as outstanding, excellent, or good | 5) Experiences with services and supports vary 6) Difficulty accessing support | 5) Better coordinated services | Overall convergence with some divergence |