Table 6.

Qualitative interview themes and illustrative quotes

Theme	Description	Illustrative Quotes
Diagnosis as too early	Discussions to help carers to prepare for end of life were often not considered appropriate at the time of diagnosis. Participants explained that families needed time to process a diagnosis before these conversations. However, there was recognition of the barrier that the typical focus of memory services today is to diagnose, initiate treatment, and discharge to primary care. Developing a relationship with families helped make conversations feel more natural and appropriately timed.	“I think that a lot of it is around the trust that … they build up with me and what they feel comfortable to talk to me about” (Interview 3)
	Some participants recognised how changes in capacity of the person with dementia were an issue if discussions are delayed. A common exception to this was lasting power of attorney and dementia as a progressive condition. Participants explained that it was important to establish lasting power of attorney when the person with dementia still had capacity. The need for honesty when delivering a diagnosis was often cited as the reason for describing the progressive nature of dementia. However, participants needed to repeat this message. Participants thought this was likely due to the high level of stress experienced by families at diagnosis. This was why postdiagnostic follow‐up was considered important for delivering new messages and helping families understand and retain important information. Admiral nurses and carer groups were considered a valuable resource for promoting these discussions. Primary care was considered unlikely to have the resource or specialist knowledge to do this.	“You're constantly reminding people … that's the normal progression, because you've got this diagnosis. People tend to forget that” (Interview 11)
Living well with dementia	Clinicians often suggested that they could not talk about the terminal nature of dementia and end of life care while encouraging a person to live well with the diagnosis.	“Where they have just received the diagnosis, to focus on the end, I think that is wrong, that destroys hope and that destroys the will to get the best out of their lives still ... I think the emphasis in the … diagnostic process has to be on support, on management, on having the best quality of life” (Interview 1)
	They encourage clients to have a good life with dementia but that this meant they could not discuss a good death.	“When I talk about diagnosis I don't talk about death. When I talk about diagnosis I talk about the things that we can help them to do in life. It might seem … slightly hypocritical potentially to start talking about well what about having a good death?” (Interview 10)
	Within this theme, clinicians draw a distinction between discussions regarding the progressive and the terminal nature of dementia. While families were routinely informed of the progressive nature of dementia, only one participant indicated that they have described dementia as terminal. The progression of dementia could be incorporated in a strength based and “living well” approach by explaining that progression is often very slow. However, using the word terminal suggested death as imminent and may take away people's sense of control.	“I think that puts the fear of God into most people, using ‘terminal’. That makes it kind of a bit more imminent and out of one's control … I try to encourage people to think about what they can do now, um, and how they can exert control” (Interview 2)
	Several participants did not recognise dementia as a terminal condition as people may die from other causes. Some clinicians had not considered dementia as terminal before.	“It's not that I've thought about it properly. I haven't decided not to use the word terminal. I just don't. It's not part of the culture of talking about dementia that you use the word terminal.” (Interview 10) “This is very thought provoking, why don't I think of dementia as terminal?” (Interview 9)
	A second subtheme was the strategy to maintain positivity until the person with dementia or family became cognisant of disease progression. Once decline became evident, participants felt this could be a trigger and a sign of readiness to discuss progression and end of life.	“In terms of end of life care, now I think this would again be discussed when there is more an issue of increasing frailty, declining mental and physical health, so at that time when end of life is more of an issue” (Interview 1)
Resistance from the person with dementia	A considerable barrier to discussing end of life related to a perceived resistance from people with dementia, despite family and carers being keen to have these discussions.	“There's plenty of people who don't talk much about (end of life preferences) because that's an indicator that they are going to be dying soon, or if the family try to prompt them to sort a plan, it is ‘oh you want me out of the way’ sort of thing” (Interview 11)
	Participants described strategies for addressing the disparate interest in these conversations between people with dementia and family. These included reiterating that discussions could not progress without the person with dementia's consent, having postdiagnostic group sessions where the person with dementia and families were separated, and providing information in writing for people to take away and consider when ready. However, this often remained a conflict.	“To start talking about advance care planning when there appears to be disproportionate interest between carers and umm patients … can make people feel uncomfortable” (Interview 10)
Crossing boundaries	The final theme was that discussing spirituality and the meaning of death with families was crossing a professional boundary and viewed as imposing personal views. This concurred with the view that discussions of death and spirituality were taboo topics, particularly amongst older people.	“To my mind that would be completely wrong ... I don't want to be seen to be proselytising ... one has to be really careful that they are not conveying one's own religious or spiritual views”. (Interview 1) “I think a lot of people are scared of talking about faith, spirituality... just like a lot of people are scared of talking about sex and sexuality, particularly in the over 65s”. (Interview 11)