1. End of Life Care in Dementia: How Family Carers Understand Quality of Care? Nathan Davies Primary supervisor: Prof. Steve Iliffe Secondary supervisor: Dr Greta Rait PhD upgrade 26.04.13

2. Overview Background –Definitions –Quality –Dementia –Family Carers Overview of Methodology Early results/ideas What’s next?

3. Palliative care Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (WHO,2002)

4. End of life care Many different defintions: –Extended period of 1 – 2 years (Radbruch & Payne, 2009) –Synonymous with palliative care (Radbruch & Payne, 2009) –12 months (DOH, 2008) –Last few days

5. What is quality? WHO base Quality of care (QOC) on 6 concepts: –Effective –Efficient –Accessible –Acceptable/patient centred –Equitable –Safe

6. Donabedian’s model of QOC Structure ProcessOutcome

7. How do we measure quality of care? Different for EOLC – the patient will die –Quality indicators –Questionnaires/tools/instruments measuring: Process Structure Outcome –Family reports

8. How common is dementia? Ageing population - 2 billion worldwide by 2050 (UNFPA, 2012) 800,000 have dementia in the UK expected to be over 1 million by 2025 (Alzheimer’s Society, 2007) over 115 million worldwide by 2050 (Alzheimer’s Disease International, 2009) Median survival after diagnosis 6.7 years (60-69) and 1.9 years (90+) (Rait et al., 2010)

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

10. Palliative approach or aggressive treatments 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

11. Pain in dementia Dementia does not itself cause pain but associated complications and comorbidities do. Pain is undertreated in people with dementia: –Differences in dementia and non-dementia patient receipt of pain management (Morrison et al., 2000; Schreder et al., 2005) IMPACT showed some professionals did not think people with dementia experience pain (Davies et al. 2012)

12. Prognostication Death trajectory typical in cancer

13. Prognostication Death trajectory typical in chronic conditions (including dementia)

14. Why are family carers important? 670,000 in the UK Many taxonomies of quality devised by professionals Experts through experience –Wishes of patients –Accurate predictions Cant speak to patients at the EOL

15. Family carers Review of palliative care services and experience of family and professional carers (Raymond et al. 2012) –Wishes and rights –Medical management and symptom control –Place of care –Food and drink –Grief

16. Research question What are the features of good quality end-of-life care for people with dementia from the perspective of family caregivers?

17. Objectives Explore the experiences and perspectives of family carers who are caring for someone with dementia. Understand what family carers expect of end-of-life care for their relative with dementia. Understand what family carers judge to be good quality end-of life-care for their relative with dementia. Develop an understanding of the current state of the art of end-of-life care for people with dementia within the UK.

18. Systematic review Search completed –403 articles found 325 after duplicates –213 excluded reading titles and abstracts –112 full texts to read Mixture of studies predominantly –Qualitative –North American

19. Method Qualitative methodology In-depth interviews 3 groups –Carers of people recently diagnosed with dementia –Carers of people currently caring for someone dying with dementia –Bereaved carers Analysed using Thematic Framework Analysis

20. Sampling Recruited from Uniting Carers, Dementia UK Purposive sampling Unable to recruit recently diagnosed to gain expectations: –Lack of responses –2 interviews completed – very difficult Sampling bias of carers (Van der Steen et al., 2012)

21. Interviews Where am I? –Interviewing complete 46 Interviews (47 participants) 4 phone interviews remainder face-face Characteristics –31 bereaved, 15 currently caring –Bereaved sample range in time from death 3 months – 10years –29 adult children, 17 spouses, 1 close friend

22. Where are they from? Manchester Liverpool London Middlesbrough Cambridge Dover Bristol Dorset

23. Experience of interviews Different approach for current compared to bereaved carers Interviewer judgement Interviewers characteristics Lasting between 25min and 2 hours Participants find them therapeutic

24. Difficulties interviewing Patient and family presence Participants become emotional Rambling – life stories Recording – noisy environments

25. Results Early emerging themes: –Dignity of person with dementia –Personalisation of care –Communication from professionals –Place of care –Battles with professionals/care homes –Care for the carers

26. 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)

27. 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)

28. 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)

29. Thesis outline Ch. 1. Quality of End of Life Care Ch. 2. Quality of Dementia End of Life Care Ch. 3. Systematic Review Ch. 4. Study Rationale Ch. 5. Methodology Ch. 6. Results Ch. 7. Discussion

30. Published –A synthesis of the literature reporting the views and experiences of professionals and family carers –Evaluating educational initiatives to improve palliative care for people with dementia: A narrative review Under review –Palliative and end of life care for people with dementia – lessons for clinical commissioners. –Modelling the landscape of palliative care for people with dementia: a European mixed methods study. Almost ready to submit –Barriers to the Provision of High Quality Palliative Care for People with Dementia in England. –Quality Palliative Care across Europe for Cancer and Dementia: International Challenges.

31. Acknowledgments My supervisors Prof. Steve Iliffe and Dr Greta Rait Family and friends for their support Dementia UK for helping with recruitment All the carers which have taken part European commission for funding All the IMPACT team 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.