1. Quality end of life care for people with dementia: What can family carers tell us? Nathan Davies Dr Greta Rait Professor Steve Iliffe Research Department of Primary Care and Population Health, UCL 14 th May 2014

2. How do we define end of life? End of life care strategy – 12 months (DOH, 2008) Liverpool Care Pathway – last few days Synonymous with palliative care (Radbruch & Payne, 2009) Extended period of 1 – 2 years (Radbruch & Payne, 2009)

3. Dementia symptoms at the end of life –Severe communication impairment –Incontinence –Infections (immune system failure) –Risk of falls/immobility –Difficulties in swallowing –Aspiration –Shortness of breath

4. Palliative or aggressive approach to treatment? ‘Aggressive’ treatments: –Antibiotics – when patient is already suffering and they will do little to relieve suffering –Tube feeding – PEG/NG feeding tubes Argued that these should not be used in end of life care with dementia

5. Current study What are the features of ‘good’ and ‘bad’ quality end-of-life care for people with dementia from the perspective of family caregivers? –What are experiences and perspectives of EOLC? –What do families expect EOLC? –What is the current state of the art?

6. What did we do? Interviewed 46 family carers –31 bereaved –14 currently caring –1 recently diagnosed 29 adult children, 17 spouses, 1 close friend Bereaved sample range in time from death 3 months – 10years Interviews from 20min through to 2 hours

7. Results: What treatment do families want? Two routes to take for treatment –Do all you can to preserve the ‘light’ of life –Simply maintain comfort Linked to several factors Acceptance of death and dying Not so simple – likely to lie on a spectrum

8. “[…] should he trip down the stairs and break his ankle, well then obviously we would need something like that done. But we don’t want tubular feeding, we don’t want a mass of - so the GP was saying that they really ought to do tests […]” (019, Wife, currently caring)

9. “[…] ‘Why did you send for the ambulance?’ And I said, ‘Well my husband is dying, he’s unconscious.’ She said, ‘Yes but he’s got dementia.’ I said, ‘Oh right, so we leave him here to die, do we?’ You know, if he fell in the river, would you say, ‘Oh forget about him, he’s got dementia. Just, you know, carry on.’” (045, Wife, bereaved)

10. Decision making – treatment cont.

11. Families understanding: “[…] there has to be a point where you have to say, dementia you can never get better from. I mean from a cancer you can get better. In fact I wish my husband had cancer, to be quite honest […] dementia you can’t get better” (018, Wife, currently caring)

12. PWD’s wishes: “[…] she’s the person that’s receiving the care is the most important person. And it’s what they want, it’s not what - because it’s not about you feeling good and thinking that you’ve done the right thing. You’ve got to make sure that you’re doing what the person themselves want” (050, Daughter, bereaved)

13. Quality of life: “[…] she’s so worried and frightened; you wouldn’t let an animal carry on like this […]” (054, Daughter, bereaved) “[…] ‘Do not resuscitate.’ Because it’s dignity, you know, but I just felt her quality of life was so poor at that stage. If she’d been looking at herself, she would have been uncomfortable, that’s putting it mildly” (038, Daughter, bereaved)

14. What is ‘good’ quality EOLC for the person with dementia? Attention, personalisation and tailoring Maintaining a sense of ‘Normality’ Respect and dignity Basic care All develop and change as the dementia progresses Personhood ??

15. Attention, personalisation and tailoring “[…] she [Macmillan nurse] just kind of connected. But she made the effort to connect, you know, she didn’t just come in and sit there with a clipboard. She made the effort to connect with him […]” (009, Wife, bereaved)

16. Maintaining a sense of ‘Normality’ “[…] in the better care homes, they would have a corner, if you like, where - and it’s not always possible, where they - where it was safe, where they would just put a load of towels or tea towels or whatever and say, ‘E, can you just do that for me love?’ and some days she’d do them and some days she didn’t. But she had a choice.” (043, 063 Daughter, bereaved)

17. Normality cont. “I would wheel her through to the kitchen and she would sit at the table and we’d have some nice calming music on, and she would watch me cook and then try things […]” (030, husband, bereaved)

18. Respect and dignity “[…] Secondly they were quite gentle with her. They didn’t do things if she didn’t like it, they would, such as lifting her up or whatever […]” (036, Husband, currently caring)

19. Respect and dignity cont. “Treating the person as a person and not somebody with an illness. I think that’s the most important thing. I mean they still have a personality even if they can’t express themselves.” (018, wife, currently caring)

20. Basic Care/key principles An element of care that is required at the end of life is not complicated and if the basic caring or nursing principles are applied the care will be ‘good’ –Pain management –Caring staff –Simple things – clothing, beauty

21. So what does all this mean? More questions Is dementia care that different? Does dementia require specialised palliative care services? Is the key here the ‘person’ and getting right the simple/basic elements of care?

22. Thank you Nathan.davies.10@ucl.ac.uk Davies N, Maio L, Rait G, Iliffe S. Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine. 2014:0269216314526766. Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013] [FP7/2007-2011]) under grant agreement n°[258883]. Disclaimer: The views expressed here are those of the authors and not of the European Commission.