Introduction

1. “It is heartbreaking when you think of how the family finds it difficult to let go”-The Experiences of Residents and their Formal and Informal Caregivers of Moving to Specialist Care Units: Findings from Staff Focus Groups Dementia and Rehabilitation – Challenges and Opportunities for Health Care Professionals DSIDC Autumn Conference, November 26th 2009St. James’s Hospital Dublin Presenter: Andrea Bobersky, PhD Student, Living With Dementia ProgrammeSupervisor: Dr. Suzanne Cahill, Research Director DSIDC and Research Senior Lecturer Introduction It is estimated that some 38,000 people in Ireland have dementia and it is projected that these figures will rise to 50,000 by 2016 and to more than 70,000 by 2026 (O’Shea, 2007). Whilst most of these people will be cared for at home, a not insignificant proportion with high dependency needs will require long-term care. Of these, some will be fortunate enough to be placed in Specialist Care Units (SCUs), especially designed to cater for the complex needs of people with Alzheimer’s disease. SCUs are small-scale environments which aim to meet the specific needs of people with a dementia (Teresi et al., 2000). Their key features include a safe and unobtrusive domestic setting, cueing and signage, meaningful stimulation and activities, private bedrooms, separate rooms for separate functions and a secure outdoor area. SCUs aim to enhance the quality of life of residents and their formal and informal caregivers. However, little is known about how people with a dementia access SCUs and their short-term and more long-term experiences of settling in (Cioffi et al., 2007). We also know little about family caregivers’ experiences of placing their relatives with dementia in a SCU and in particular how staff employed, make admission decisions and deal with this process. This study attempts to address this current gap in our knowledge. Research Goals This study aims to: • explore the short-term and long-term effects of moving into a SCU from an individual and family caregiver perspective • identify the role and support offered by SCU staff during the transition process • examine ways in which front-line staff make decisions about long-term care admission and deal with the practicalities of the transfer • investigate the more long-term effects of living in a SCU from an individual and family caregiver perspective. Research Methodology A qualitative exploratory research design is being used. Data is being collected from (i) people with dementia, (N = 7), (ii) their family caregivers, (N = 7) and (iii) SCU staff, (N = 12), within 3-4 weeks (baseline) and within 4-6 months (follow-up). Inclusion criteria are (i) a diagnosis of Alzheimer’s disease or any other dementia sub-type and (ii) a recent admission to a SCU and (iii) the availability of a primary caregiver. Research methods being used to collect data include (i) in-depth semi-structured interviews, (ii) Focus Groups, (iii) self-administered questionnaires, (iv) nursing home record data analysis and (v) the Mini Mental State Examination (MMSE). In-depth interviews and Focus Group findings will be analysed by means of Interpretative Phenomenological Analysis. Simple descriptive statistics will be used to analyse MMSE test scores. The research methodology is based on an interpretative phenomenological framework. This approach is seen as particularly suitable for exploring how individuals experience certain phenomena and how they attach meanings to their experiences (Shaw, 2009). Research Sites The sites for this study are two different Specialist Care Units located outside Dublin. Both SCUs are purpose-built and are located within two different Geriatric Hospitals operating under the Irish Health Service Executive. Results Focus Groups 1) Matching needs and criteria – Due to lengthy wait-lists, front-line staff emphasised the need to apply strict admission criteria and admit those residents who might benefit most from the SCU. For this reason, residents’ holistic needs were assessed, and admission decisions were made very carefully by the SCU team in consultation with other health service professionals and with family caregivers. 2) Dealing with pressures – Some staff members reported they experienced high levels of stress when dealing with new admissions. Sources of stress identified by them included family caregivers’ guilt and exhaustion prior to admission, the high demand on SCU beds and the difficulties involved in their making decisions about who might and might not most benefit from such placements and the need in some cases to discharge residents with final- stage dementia from the SCU to free up beds. 3) Easing into the SCU – Front-line staff stated that new residents tended to settle into the SCU in their own individual way. This phase was generally described as a gradual process of getting to know each other. Staff spent considerable time facilitating the new resident to settle into the SCU environment. Some front-line staff saw respite care as an important conduit, or entrée into long-term care; it helped to prepare residents gradually for long-term care admission. 4) Supporting and being supported – Front-line staff used a range of practical and psychological supports to assist residents and family caregivers, during and immediately following admission. Useful initiatives and supports included, (i) inviting family caregivers to visit the SCU prior to admission, (ii) reassuring family caregivers about the physical setting and informing them about the Unit’s philosophy of care, (iii) collecting information about the resident including his or her life story and sharing this information with all staff members before admission, (v) taking the time to get to know the new resident after admission and (vi) subsequently responding to the new resident in a person-centered flexible and individualized manner. 5) Experiencing positive changes following admission – Front-line staff identified positive changes in their residents’ behaviour and mood over the first weeks following admission. Some reported reduced levels of anxiety, improved self-esteem, better interactions, and increased independence in activities of daily living. In addition, in some cases, new residents helped to motivate other residents to share their hobbies. This helped to inform the design and delivery of SCUs’ activity programmes. Discussion Preliminary findings from this study reveal the type of strain experienced by staff conscious of long wait lists and being obliged to make important admission and discharge decisions affecting many peoples’ lives. The admission of new residents to a SCU is a complex and on-going process which requires good organisational and communication skills on the part of front-line professional staff. There is a need for better recognition of the choices, dilemmas and strains these health care professionals working in dementia care experience during this period. Training programmes should pay particular attention to modules which further up-skill staff on topics such as SCU admission assessment protocols, ways of helping family caregivers adjust to home care relinquishment and mechanisms for helping new residents settle into more purpose-built environments. Some family members were disappointed that their relatives failed to meet the eligibility criteria for SCU admission and front-line staff reported feeling pressurised about having to communicate and defend such decisions. There is need for improved public awareness about the type of individual with dementia best suited for accommodation in SCUs. The short-term benefits of placement in a SCU for persons with dementia in this small qualitative study, included reduced anxiety, improved self-esteem and better interactions. There is a need for more quantitative studies to be undertaken to estimate the real effectiveness of SCUs both in the short term and more long term. To avoid having to transfer people with end-stage dementia to other facilities, existing SCUs need to consider extending their facilities to include areas for those terminally ill with dementia. Acknowledgements This PhD studentship is part of the Living With Dementia Research Programme and is funded by The Atlantic Philanthropies. Literature Cioffi, J. M., Fleming, A., Wilkes, L., Sinfield, M. & Le Miere, J. (2007). The effect of environmental change on residents with dementia: The perceptions of relatives and staff. Dementia 6 (2), 215-231. O’Shea, E. (2007). Implementing policy for dementia care in Ireland. The Alzheimer Society of Ireland (Electronic Resource). Shaw, R. L. (2009). An introduction to Interpretative Phenomenological Analysis (Course materials). Aston University. Teresi, J. A., Holmes, D. & Ory, M. G. (2000). The therapeutic design of environments for people with dementia: Further reflections and recent findings from the National Institute on Aging Collaborative Studies of Dementia Specialist Care Units. Gerontologist 40 (4), 417-421.