Background Results Aim Method Conclusions Caregivers’ interactions with health care services – mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia - A qualitative study. Lincolnshire Carers’ Conference, 12th June 2018 Despina Laparidou, Dr Jo Middlemass, Professor Terence Karran, Professor A. Niroshan Siriwardena Background Results We interviewed 18 carers, 3 patients with dementia and 17 healthcare professionals: The majority of the carers were female (15/18); ages ranged from 47 years old to 84 years old; twelve carers were spouses of the person diagnosed with dementia, five were adult children and one was a daughter-in-law of the person with dementia. Five major themes: Day-to-day responsibility of caring for a person with dementia is often undertaken by a family member or friend. Research has shown that often carers receive little support and information on dementia and report lack of preparedness to provide effective care. The challenge of diagnosing dementia (primary stressor). “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 “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, Carer Carers need and expect an in-depth knowledge and understanding of dementia from healthcare professionals, which is perceived to be currently lacking (primary stressor). “It’s been written by a professional who thinks they know the questions and then who thinks they know the answers.…It’s just that you think, after five years I know more than you do, because I live with it.” Sue, carer “I think dementia is …. 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 Aim We aimed to explore the 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. Method We used a qualitative design and thematic analysis, following the caregiving and the stress-process model for individuals with dementia. The study involved focus groups and one face-to-face interview with: Informal carers and people with dementia; Healthcare professionals working on dementia. Recruitment took place in Lincolnshire: Carers/patients: through support groups, the University of Lincoln, and the Healthier Ageing Public and Patient Involvement (HAPPI) group; Healthcare professionals: through two general practices and the Lincolnshire Partnership Foundation NHS Trust. Inclusion criteria: Carers: being an unpaid family member or friend caring for someone diagnosed with dementia; Patients: having a diagnosis of any type of dementia and being capable of giving informed consent; Healthcare professionals: working with patients diagnosed with dementia and their carers. Data collection: March - July 2015. NVIVo 10 software was used to facilitate analysis. Mismatch of communication and expectations, with carers expecting a holistic approach to the primary care of dementia and receiving a fragmented service (secondary role strain). “..we’re only learning from each other! We’ve got no official ways to pick the information up. What we didn’t get to learn from the doctors or the hospitals; we get to learn in this support group.” Tyler, Carer “The other thing that people need to be aware of is that, with dementia, 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 the skin care 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, Carer Need for support (secondary role strain) and education for carers (primary stressor). “I would like to know. I mean I am worried about the future…Because I don’t know anything!” Pam, Carer “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, Carer “Support; they’ve got to know where to go for the support as well, that’s the key thing. And it’s got to be readily available…access to the right people that they can also provide that service.” Penelope, Nurse Carer involvement in the process of care (potential mediator). “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, Carer “I think with behaviours and diary, that’s very useful… so what’s triggered things, what’s caused the anxiety– because people behave differently in different places. Plus it would also, I feel, give the carers the feeling that they’re actually doing something to help, and it gives them a purpose and a focus, which can only help.” Daisy, Ward Manager Conclusions Carers of people with dementia report a higher need for information and holistic, structured support from health and social care services that is not currently met. Offering carers the support they want and need should be the focus of future interventions, in order to alleviate some of their caring burden and improve their well-being, and that of their care-recipients. *Publication: Laparidou, D., Middlemass, J., Karran, T., & Siriwardena, A.N. (2018). Caregivers’ interactions with health care services – mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia - A qualitative study. Dementia, 1-17. *Contact Information: Despina Laparidou, Research Assistant, Email: dlaparidou@lincoln.ac.uk, Tel: 01522 837407.