1. Despina Laparidou, Dr Jo Middlemass, Prof Terence Karran, Prof A. Niroshan Siriwardena.

2. Background Approximately 670,000 informal carers in the UK at the moment (Alzheimer’s Society, 2014). National Dementia Strategy key objectives: –Quality information; –Access to care, support and advice. Carers: –Little support and information on dementia (Bowes & Wilkinson, 2003) ; –Trouble accessing services/support (Tetley, 2013) ; –Lack of preparedness to provide effective care (Ducharme et al, 2011). GPs’ views (Greenwood, 2010) : –Providing care can be difficult; –Lack of confidence in meeting carers’ needs; –Lack of training and knowledge.

3. Aims Main aim: Explore experiences of informal carers of people with dementia around challenges they face relating to their care- recipients’ dementia and when interacting with the health and social care system. Secondary aim: Investigate healthcare professionals’ (HPs) views and current practice regarding people with dementia and their interactions, if any, with informal carers.

4. Methods Qualitative design: thematic analysis ( Braun & Clarke 2006). Inclusion criteria. Data collection: March - July 2015, Lincolnshire. Participant recruitment. Carer and HP focus groups (and 1 carer interview): –Current service provision; –Future interventions; –Monitoring role for carers.

5. Results 17 carers: –The majority were female (14/17); –Ages ranged from 47 years old to 84 years old; –Relationship to the person with dementia: 12 spouses, 4 daughters, 1 daughter-in-law. 17 healthcare professionals (HPs): –8 GPs, –4 practice nurses, –1 occupational therapist, 1 ward sister, 1 ward manager, 1 charge nurse, and 1 phlebotomist.

6. Five main themes 1.The challenge of diagnosing dementia. 2.Carers’ need and expectation of an in-depth knowledge and understanding of dementia from healthcare professionals. 3.Need for carer education. 4.Lack of support and mismatch of communication and expectations. 5.Carer involvement in monitoring care and disease.

7. The challenge of diagnosing dementia Main challenge was getting an initial diagnosis of dementia and appropriate treatment for other health issues. ‘Dementia has a lot of issues, but the main issue as a GP is when the person is not willing to accept that he’s got dementia, not accepting help…doesn’t want to be referred.’ Dr J., GP

8. The challenge of diagnosing dementia Carers felt they couldn’t get through to GPs and their opinions and observations were not taken seriously. ‘And you cannot get past that because that person's told the GP there's no problem and the GP believes that, despite there being a diagnosis of dementia. It is so difficult…And that's been my worst barrier really, getting through to the GP.’ Kathy, daughter-in-law, 54 years old

9. Carers’ need and expectation of an in-depth knowledge and understanding of dementia from HPs Carers felt that HPs lack understanding of dementia and how it affects the patients/carers. ‘…my mum was in hospital and they didn’t seem to have a clue about dementia at all, even though they said they were dementia trained…’ Jackie, daughter, 47 years old ‘…until you’ve probably had personal experience of it, it can be something sort of difficult to understand what’s going on within a family…. It’s a bit like, before you had children you probably weren’t able to relate to patients with young children really.’ Nina, Phlebotomist HPs felt that it is difficult to understand what it’s like to have dementia.

10. Need for carer education Little or almost no information or education about dementia offered to carers. Carers often lacked understanding of dementia, why patients behaved the way they did and how to deal with the patients’ challenging behaviours. ‘The only information I got…I got leaflets from Age Concern and all the other organisations, which you put in a folder and you read them and then you forget them! But there wasn’t anything that really told you how it would progress and what to expect.’ Mary, wife, 84 years old

11. Need for carer education Progression and prognosis of the dementia; Available services; Financial and legal advice; Dealing with patients’ challenging behaviours; Stress reduction and relaxation techniques; Sleep management; Home modifications. ‘I would like to know. I mean I am worried about the future…Because I don’t know anything!’ Pam, wife

12. Lack of support and mismatch of communication and expectations Carers often did not receive sufficient support from health and social care services. Had to pay for many types of support. ‘I just don’t understand why they are so unhelpful…I think something needs to be done, because we don’t seem to get any help really from anywhere. You’re just a bit left on your own.’ Rose, wife, 74 years old

13. Lack of support and mismatch of communication and expectations HPs and care providers do not work together or communicate enough, leading to a fragmented service for carers. ‘…you will need all the Trusts working together, and they don't. And you get moved from one organisation to another and you've got to keep going back to the GP to get re- referred and then you get moved around from one unit to the next unit to the next… It's not joined up, you know…and this is the battle that you've got.’ Thomas, husband

14. Carer involvement in monitoring care and disease Monitoring helpful for: –The progression of their care-recipients; –Recording positive things; –Identifying triggers for patients’ behaviours. But only if HPs would be willing to accept it as reliable and take their observations under consideration. ‘I’ve kept a diary and thank God I have! Because you know now it’s coming into its own...and so I think keeping a diary is really very important...’ Victoria, wife, 74 years old

15. Carer involvement in monitoring care and disease HPs happy to accept the carers’ observations. Some were also apprehensive: –Extra burden for carers; –Carers might worry more about the condition and progression of the patient. ‘…yes we can empower people, but are we going to then add extra burden on them and extra worry and anxiety and is that worthwhile eventually in terms of what we achieve, in supporting carers and optimizing care for the patient? And, I don’t know the answer to that, but I suppose it’s a question to ask.’ Dr SB, GP

16. Discussion Carers experienced difficulties receiving an initial diagnosis for dementia and the support they wanted and needed, often having to pay for services themselves. Carers would like more information and education on dementia. Two important findings: Even though HPs might be dementia trained, carers felt that HPs do not fully understand what it is like to live with dementia and how it can affect patients and their carers. Both carers and HPs felt that having carers keep a diary would be helpful.

17. Discussion Strengths and limitations. Implications for policy and practice: –Educational programmes and support for carers; –Carer and patient pathways for dementia; –More training for HPs on dementia. Future research –Feasibility study for a cluster randomised controlled trial of a complex intervention for improving outcomes for carers and their care- recipients.

18. Conclusions Need for more information and structured support is not currently being met. HPs do not fully recognise carers’ and patients’ needs. Offering carers the support they want and need could help alleviate their burden and improve well-being.

19. CAD: E 3 Multidisciplinary Project Team (in alphabetical order) Professor Terence Karran -Professor of Higher Education Policy & Project Lead Despina Laparidou - Research Assistant (Background in Health Psychology) Dr Jo Middlemass - Research Fellow & Research Lead of the study (Background in nursing) Professor A. Niroshan Siriwardena - Professor of Primary & Pre- Hospital Health Care and Academic General Practitioner

20. References Alzheimer’s Society. Dementia UK: Update, 2014. Available from https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=341 [Accessed 6th April 2016] Bowes, A. & Wilkinson, H. (2003). ‘We didn’t know it would get that bad’: South Asian experiences of dementia and the service response. Health and Social Care in the Community, 11 (5), 387–396. Braun, V., & Clarke, V. (2006). Using Thematic Analysis in Psychology. Qualitative Research in Psychology, 3: 77-101. Available from: doi: http://dx.doi.org/10.1191/1478088706qp063oa Department of Health. Living well with dementia: A National Dementia Strategy. London. Available from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf [Accessed 6th April 2016] Ducharme, F., Lévesque, L., Lachance, L., Kergoat, M.J., & Coulombe, R. (2011). Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: A descriptive study. International Journal of Nursing Studies, 48: 1109-1119. Available from: doi: http://dx.doi.org/10.1016/j.ijnurstu.2011.02.011 Greenwood, N., Mackenzie, A., Habibi, R., Atkins, C., & Jones, R. (2010). General Practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services. BMC Family Practice, 11: 100. Available from: doi: http://dx.doi.org/10.1186/1471-2296-11-100 Tetley, J. (2013). Articulation, service use, managing and coping: understanding the needs of older people and carers living with dementia. International Practice Development Journal, 3 (2): Article 1. Available from http://www.fons.org/Resources/Documents/Journal/Vol3No2/IPDJ_0302_01.pdf

21. Thank you for listening! For more information on the CAD: E 3 Project contact Despina Laparidou: dlaparidou@lincoln.ac.uk