Family Carer Perspectives of Quality End of Life Care for Dementia Nathan Davies 1, Greta Rait 1 and Steve Iliffe 1 1 UCL, Research Department of Primary Care and Population Health, Royal Free Campus, Rowland Hill St., London, NW3 2PF Background There are 670,000 family carers of people with dementia in the UK (1), they are experts through experience, often spending 24 hours a day with the person with dementia and having spent either lifetimes together through marriage or ears being brought up by them as children. They often know their wishes, like and dislikes incredibly well and are able to reflect this in their end of life care. The majority of research which has looked at family carers in dementia has focussed its efforts on: Early stages and diagnosis Transition stages stresses and burden of caregiving Feelings of guilt or bereavement (2,3) We know very little about the experiences of caring for someone with dementia at the end of life (4). Aim This study aims to explore what are the features of good quality end of life care someone with dementia from the perspective of family caregivers. Method Design Qualitative methodology using in-depth interviews Participants Family carers of people who are currently dying with dementia Bereaved family carers of someone with dementia Procedure Participants were purposively sampled through Dementia UK a national charity which organises a register of carers who are willing to participate in research. A topic guide was developed from literature reviews of the field, it was then tested and changed iteratively throughout the interviewing process. Face to face interviews were conducted however telephone interviews were conducted when requested by participants. Interviews were transcribed verbatim and a mixture of thematic and narrative analysis will continue to be completed on the data. Results Compassion “I asked them [hospital staff] not to put him next to the electrical box, but they ignored this, and put him there anyway. He thought the coloured tags attached to his cannula were the keys to open the electrical box so he pulled out his cannula, making his arm bleed copiously. There was blood all over the pillow, but the nurse just turned the pillow over. The nurse said that “my father was nothing but a problem”” (Daughter) After death care “[…] watched them [undertakers] carrying her down the stairs, you know in sort of a black body bag and that was, that was horrible. I felt really, as if at that point we maybe shouldn't have been there, we maybe should have been sat in the lounge […] I mean because she was vertical at one point, because they were negotiating bends in the stairs […] we could have been alleviated from that” (Daughter) Fear “An auxiliary nurse came back in and told him to ‘sit the f*** down’. I saw this when I was there, which made me only wonder what happened when I wasn’t there. No matter what anyone says you cannot say anything to the nurses because you are leaving your loved one at their mercy” (Daughter) Personalisation of care “there was a caretaker there who was just a lovely guy, and um because my dad was quite sprightly, very, very physically fit, um he was really good with my dad, and he said, ‘Come on Jack, we’re going to B&Q,’ and he’d take my dad along to B&Q. My dad thought that he was working there. He was always grumbling about not getting paid” (Daughter) Quality of care Conclusions Quality is not hard to achieve in many situations – its taking care back to it’s basics and respecting the person with dementia right through to the end of their life There is a large spectrum about what quality of care actually means to carers, quality of care is personal and individual, it means different things to different people. What one judges to be good quality care is not what another one does. Good end of life care doesn’t mean saturating people with dementia with lots of treatment but it also doesn’t mean giving up on them A patients care is not separate from a carers care – they should be integrated to achieve high quality care Communication “[on calling the GP after her Dad had died] the GP said to me what the hell have you done to your Dad” (Daughter) Dignity “For me to do that to my Dad [personal care] I was cursing him… it was very grave situation” Communication “he (Dad) would say to me you killed your mother you b**ch […] you are a cursed child you should have been killed the day you were born […] and I was thinking I don’t get this guy, and at this point I had still been told nothing about the illness” (Daughter) Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/ ] [FP7/ ]) under grant agreement n°[258883]. References (1) Alzheimer’s Society (2013). Dementia 2013 infographic. From Accessed 03 May (2) Peacock SC. The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative & supportive care. 2012;11(2): (3) Raymond M, Warner A, Davies N, Manthorpe J, Ahmedzhai S, Iliffe S. Palliative care services for people with dementia : A synthesis of the literature reporting the views and experiences of professionals and family carers. Dementia: the international journal of social studies. DOI: / Epub ahead of print August 10, (4) Sampson EL, Burns A, Richards M. Improving end-of-life care for people with dementia. Br J Psychiatry. 2011;199(5): If you would like further information please contact: Nathan Davies: