Table 3 Integration of survey, interview, and workshop findings

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