R&D Newsletter. Welcome. Professor Martin Orrell, Associate Medical Director for Research and Development, NELFT.

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1 R&D Newsletter A newsletter about Research and Development at North East London NHS Foundation Trust. August 2010 Issue 13 Welcome Professor Martin Orrell, Associate Medical Director for Research and Development, NELFT. I am pleased to introduce another R&D Newsletter. We have been fortunate to spread the word about NELFT research at a number of major conferences in both Chile and Greece over the last six months. At the annual meeting of Alzheimer s Disease International in Thessaloniki the Executive Director Mark Wortmann was particularly interested to hear more about cognitive stimulation therapy as it could be a low cost and useful intervention for people with dementia in lower and middle income countries. As a result of this Amy Streater, Research Assistant on the SHIELD MCST study, has been invited to present at the Asia Pacific Regional Conference in Malaysia this September and to do a workshop on how people can get CST groups running in their country. Since drug treatments for dementia generally cost around 1000 a year it is easy to see how CST groups would be much cheaper to run and organise. In September we welcome Monica Chi and Deepak Sankhla as researchers on the SHIELD and REMCARE studies and Susan Sadek who will be a research assistant working with Amy Spector on the Anxiety and Dementia study funded by the recent RFPB grant. Anna Piasecka joins us as a Clinical Studies Officer funded by the Mental Health Research Network to support the considerable number of grant funded studies which we have running in the Trust. We also say goodbye to a number of people who have been very helpful working for the dementia research group on short term agency contracts to fill the urgent need for staff and enabling recruitment and assessments to go ahead on time. These include Keir Yong, Maria Stavrinaki, Graziella Orru and Nyla Bhatti. Furthermore Liz Harte has been successful in gaining a place on a D.Clin.Psy programme in Dublin so we wish her all the very best for the future and hope she will keep in touch. The R&D department continues to prosper as highlighted by our recent very successful Open Day (see the article by Fiona Horton in this issue). I hope that you enjoy this excellent issue of the Newsletter.

2 Please remember to register all projects with the R&D department Understanding the sequence of conflict and containment events (CONSEQ) n Background. Acute psychiatric inpatient wards experience high levels of conflict behaviour (e.g. violence, absconding, self-harm) which are managed by containment methods (e.g. restraint, seclusion, time out, sedation). Most previous studies have only examined one or two conflict and containment events, therefore little is known about their sequence, and what the common pathways of events are for patients on inpatient psychiatric units. The potentially delicate interplay of conflict and containment events for individual patients has been missed by other studies. Previous research has indicated that there is a complicated relationship between conflict behaviours and containment measures. For example, it is possible that use of special observation may be found irritating, resulting in verbal abuse, triggering an offer of PRN medication, which refusal leads to coerced medication, during which the patient resists with physical violence. It is also possible that staff have stereotyped response patterns to specific behaviours, and that these may vary by hospital and/or be differentially successful. Such bifurcations of event sequences could offer important clues for reduction strategies. This study aims to identify the most common sequences of conflict and containment events for patients over time and potential decision points where alternative approaches can be applied. The study is run by Professor Len Bowers and his research team at City University and is funded by the National Institute for Health Research. n Method. A random sample of 31 psychiatric hospitals was selected from three National Institute for Mental Health in England (NIMHE) regions (Eastern, London, and South East). Over 500 patients in acute psychiatric wards, stratified by hospital and ward were included in the study. Patients were eligible to participate if they were inpatients of that specific acute ward, years old, had stayed on that specific ward for two weeks or more, were present on the ward when the survey was conducted, were well enough and safe enough to be approached as judged by the ward staff, and gave informed consent to take part in the study. Researchers approached randomly selected patients and provided them with information about the study in order to participate. Patients who agreed to discuss the study were given an information sheet and had the opportunity to discuss any concerns with the researcher, before being asked to consent. After informed consent was obtained the researcher accessed the patient's medical and nursing records for approximately 60 minutes to collect the appropriate information. For each of the selected patients, involvement in incidents of conflict and containment during the first two weeks of the current admission were collected using the Patient-staff Conflict Checklist (PCC). A computerised version was created and piloted, so that the order of events and the time lag between them could also be collected, as well as counts of events. Socio-demographic data (e.g. age, gender, marital status); ethnicity; diagnosis; history of substance use; and history of harm to self and others were collected for each patient. n Next steps. Data collection was completed at the end of March Analysis of the data is underway to examine sequential patterns of conflict and containment during the first two weeks of admission. In particular, we will be looking for commonalities in these sequences and relationships with other patient characteristics, such as gender, diagnosis, etc. We want to identify potential decision points where alternative approaches can be applied so conflict and containment will be reduced. Duncan Stewart Research Fellow School of Community and Health Sciences City University 2 Research and Development at North East London NHS Foundation Trust

3 Challenge FamCare NELFT will be hosting a new dementia care trial over the next year. It is the Challenge FamCare trial which aims to measure the impact of a web-based training and decision support system for community mental health staff whose role involves supporting family carers of people with dementia living at home. The main purpose of the Challenge FamCare trial is to find out whether the web training reduces the frequency and severity of challenging behaviours in people with dementia living at home, and at what cost. Challenging behaviours could involve anything from shouting, wandering and repetitive questioning to delusions and hallucinations to forgetting key events and names. The researchers also hope to find out whether the intervention reduces family distress, improves coping and effectiveness in the family carer, enhances the quality of life of people with dementia and improves the relationship between the family carer and person with dementia. The study will involve all 4 boroughs of NELFT. There is a pilot phase in each borough to ensure that CMHT members and researchers are comfortable with the procedures and find out the likely speed at which referrals will be made. This helps in making sure that everything is set up and in place for the main trial. In NELFT two boroughs will be randomly allocated to receive the web tool and two boroughs will form a usual care control. The control boroughs will be able to access the training after around a year, once the research follow-up interviews are complete. The organisers of this trial are based in Hull. The research is led by Prof Esme Moniz-Cook who is a renowned clinical psychologist specialising in the treatment of challenging behaviour in people with dementia. Across Britain, around 30 Community Mental Health Teams will be taking part in the trial. At each site new referrals to the team are screened for potential eligibility. Where appropriate, potentially participating people with dementia and their family carers are contacted by the researcher either directly, where permission is given, or via the clinical team. All research interviews are carried out by research staff to keep additional burden to clinical staff at an absolute minimum. In June Esme and the trial manager Cathryn Hart visited NELFT to meet managers and other members of community mental health teams for older people in NELFT. The meeting provided a first hand opportunity for teams to hear more about the research and for Esme and Cathryn to learn about the differences between teams and team procedures in NELFT. Those attending the meeting were keen to take part, and now that local governance checks have been completed, the first pilot is due to start in September. Within NELFT the lead for the project will be Georgina Charlesworth and the first research worker assigned to the project will be Alex Feast. Trial registration: ISRCTN Dr Georgina Charlesworth Consultant Clinical Psychologist and Lecturer NELFT / UCL Georgina.Charlesworth@nelft.nhs.uk Alexandra Feast Research Assistant Alexandra.Feast@nelft.nhs.uk Research and Development at North East London NHS Foundation Trust 3

4 If you want to submit an article or info for the research community please contact R&D goes global 15th International Congress of the World Federation of Occupational Therapists, 4-7 May 2010, Santiago, Chile The World Federation of Occupational Therapists (WFOT) is the official international organisation for occupational therapists and the promotion of occupational therapy. WFOT host a Congress once every four years which both Jennifer and Ritchard were proud to attend along with 3000 other occupational therapists. The Congress organisation was impressive given that Chile had suffered a major earthquake shortly before, plus the travel disruption caused by the volcanic ash cloud. There were over 200 papers and 800 posters. It was inspiring to hear the latest update on major studies directly from the leaders of our profession. Professor Florence Clarke and colleagues presented aspects of the Well Elderly II clinical trial being conducted at the University of Southern California. Dr Maud Graff and her colleague Marjolein Thijssen from The Netherlands described the implementation phase of their clinical trial of occupational therapy for community dwelling people with dementia. These are major contributions to the evidence base that underpins our own practice. There was also the international launch of the Research Centre for Occupation and Mental Health (RCOMH): a collaboration between the UK College of Occupational Therapists Specialist Section Mental Health, Developing Partners Recovery Through Discovery (a service user organisation), three NHS mental health trusts including South London and the Maudsley (SLAM), The Retreat and York St John University. The Centre s mission is to develop world class research in occupation and mental health to influence best practice and is multidisciplinary. For further information please visit of 13 self assessment pilot projects for which she was the occupational therapy advisor within a team at the Personal Social Services Research Unit at the University of Manchester. Her paper Does occupational therapy intervention for older people with dementia in residential and nursing homes improve quality of life? presented the results of the cluster randomised controlled trial conducted for her recently awarded PhD. The paper was well received with interesting questions raised and subsequent requests for more information and presentations. Ritchard attended the Congress in his capacity as Programme Coordinator, an elected position that forms part of the WFOT Executive Management Team. Ritchard coordinates over 18 international projects which include the production of the organisation s peer reviewed journal, marketing, website, promotional materials and translations. He also is responsible for the collation of the professions global demographics and launched the results of OT Human Resources 2010 a project that received a 93% response rate from 70 national occupational therapy associations. For further information please visit Yes, the days were long and there was frequently the challenge of listening to presentations via an interpreter, but it was an experience not to be missed. Jennifer made two presentations. A poster, Enhancing the efficiency and effectiveness of assessment in community care: introducing self assessment in occupational therapy services - challenge or opportunity? reported the Department of Health funded evaluation of the effectiveness Dr Jennifer Wenborn Clinical Research Fellow UCL / NELFT jennifer.wenborn@nelft.nhs.uk Ritchard Ledgerd Clinical Researcher NELFT ritchard.ledgerd@nelft.nhs.uk 4 Research and Development at North East London NHS Foundation Trust

5 If you would like to be on the R&D mailing list please contact ADI GREECE Recently members of the SHIELD (Support at Home Interventions to Enhance Life in Dementia) team attended the 25th International Conference of Alzheimer s Disease International: Dementia: Making a Difference held on March 2010 in Thessaloniki, Greece. The event was organised in collaboration with the Greek Association of Alzheimer's Disease and Related Disorders. The conference works with Alzheimer associations around the world. With the aim of bringing staff and volunteers of Alzheimer associations, families, people with dementia, clinicians, interested professionals and scientists together to learn from one another. There was an emphasis on nonpharmacological treatment for helping people with dementia and their carers that ties in well with the purposes of the SHIELD project. Delegates were also informed of new findings in dementia medical treatments and diagnosis and of the activities of ADI's recently developed prevention working group aiming to guide the development of effective dementia prevention approaches. The conference in Greece was beneficial in many ways. It gave me the opportunity to find out what is going on elsewhere in a relaxed environment where everything was well explained and questions were welcome. Most people get that feeling where they do not want to ask for fear of looking silly but I tended to find that people asked the question I was thinking of, much to my relief! It also allowed me to indulge my interest in other areas of research relating to older age care, as it is always exciting to hear what other people are doing. It is always nice to be surrounded by people who share the same interest as yourself. The space where the conference was held was well laid out and I did not feel anxious about moving from room to room to hear about what I was interested in, with the brochure being extremely useful to highlight what I would like to see. The brochure also allowed me to readily access presentations that I was unable to attend but was curious to know more about. It is always humbling to hear speakers that are infamous within your sector of work, and gives you inspiration to try that little bit harder and at the same time wondering how they manage to know so much. It also reminded me of why I love what I do. It is really nice to attend a conference as a team and support one another. There was a lot of pre planning in order to make sure that everyone presenting felt that they were not alone, as nerves do get the better of you. Not only do you get to admire your colleagues for the good work they do but you are able to receive feedback on your own presentation which is always beneficial. We were able to dine together as a team which allowed us to catch up on the other parts of the SHIELD project. It was useful for me personally as I am in the early stages of my PhD so I found it extremely useful to receive advice from colleagues more experienced than myself. There were eight SHIELD team members that attended the conference who covered a variety of topics. The Presentations were on the following topics: Dr. Vasiliki Orgeta presented Assessing psychological distress in caregivers of people with dementia: Beyond the single severity score. The study investigates the subcomponents of psychological distress in dementia caregivers and identify which patient and carer characteristics are associated with various aspects of psychological distress. Results demonstrate that health parameters of the carer have a considerable predictive value in the experience of psychological distress. Shaheen Ahmad presented Who volunteers to be a peer supporter for family carers of people with dementia?: Findings from the SHIELD-CSP pilot. The aim of the Carer Supporter Programme is to evaluate the impact of one-to-one support for newer carers of people with dementia by more experienced peers. Carer Support volunteers matched newer carers in terms of demographic characteristics with the exception of gender where males were underrepresented. Strategies to target male supporters are considered, as are strategies for identifying appropriate carer supporters for carers of relatives with a rarer type of dementia. Research and Development at North East London NHS Foundation Trust 5

6 Visit our website to find details of upcoming R&D events R&D goes global I came back to England feeling ever so lucky to be part of such a fantastic team, and can not wait for more conferences in the future. Amy Streater, Research Assistant SHIELD MCST Amy.Streather@nelft.nhs.uk Sandeep Toot presented Is case management effective for home support for people with dementia: A systematic review. This is a study to evaluate the effectiveness of case/care management approaches to home support for people with dementia from the point of view of the different people involved (patients, carers, and staff) compared with other forms of treatment. There is little evidence for its effectiveness. The review includes the overall completeness and applicability of the evidence, the quality of the evidence according to the Cochrane guidelines, and the implications for practice and research. Dr Claudia Miranda presented The needs, social networks and quality of life of people with dementia living at home The presentation highlighted the management of people with dementia living at home should consider: an interdisciplinary and coordinated system which includes environmental, physical, social and psychological areas and also interventions aiming to reduce unmet needs through the treatment of behavioural and psychological symptoms and the involvement of people with dementia in the community. Amy Streater presented on Service Users involvement in the development of a maintenance cognitive stimulation therapy (CST) programme: A comparison of the views of people with dementia, staff and family caregivers. The objective of the study to identify improvements for the draft maintenance Cognitive Stimulation Therapy programme, by involving people with dementia, staff and family caregivers. Positive agreement was found among fourteen themes and suggestions were made for the remaining five themes. These results will be used to revise the maintenance CST manual and be tested through a randomised controlled trial. Prof Martin Orrell presented on Occupational therapy and people with dementia in care homes to assess if occupational therapy intervention for people with dementia in care homes improves quality of life. Adherence to the intervention programme varied. Homes with strong management commitment reported better quality of life for their residents. Dr. Juanita Hoe presented Development of the maintenance cognitive stimulation therapy manual as an evidence-based programme for people with dementia. This study follows Medical Research Council guidelines for Phase I or modelling to develop an evidence-based maintenance group therapy programme for people with dementia. The MCST manual comprises a programme of 24 sessions of maintenance CST, based on the theoretical concepts of RO / Cognitive Stimulation and grounded on the original CST programme. In addition to the presentations there were posters presented by Sandeep Toot on Crisis resolution/ home treatment approaches to home support for older people with mental health problems: A systematic review. To evaluate the effectiveness of crisis resolution/home treatment approaches to home support for older people with mental health problems compared with other forms of treatment. Despite many anecdotal reports of reductions in bed usage the effectiveness of such services remain very much under researched. This review is very much needed to assess the evidence available and to consider applicability in current practice. Elisa Aguirre presented a poster entitled Translating research into practice: A pilot study examining the use of cognitive stimulation therapy (CST) after a one day training course. This pilot study looks at the outcome of a one-day training course in Cognitive Stimulation Therapy (CST). Individuals with better learning characteristics may be more likely to take up CST following training, and simple factors such as a lack of staff time and resources may prevent people from carrying out CST. Amy Streater Research Assistant SHIELD MCST Amy.Streather@nelft.nhs.uk 6 Research and Development at North East London NHS Foundation Trust

7 If we do not have your publication details let us know contact R D Open day Over 80 people attended this year s 9th Annual Research and Development Open Day, and this included an array of NELFT staff, other NHS staff, academics, external research staff, students and users/carers. The day comprised of nine presentations on a variety of topics in mental health research, including areas in cognitive remediation, dementia, responding to domestic violence and older people s exercise intervention in residential and nursing accommodation. There were also three workshops in the afternoon focussed around choosing and designing surveys, writing up your research and evaluating and developing interventions; all of which were extremely well attended. We received some very encouraging and positive feedback on the event from all those who attended and presenters. The most popular event of the day was Dr. Jessica Hobsons s presentation on A Social- Developmental Approach to Understanding Autism Treatment as an Early Intervention. Dr Hobson who is a Senior Research Fellow kindly joined us from the Institute of Child Health. The event was successful and prompted some very positive feedback including: Caroline Barber, Assistant Psychologist, NELFT I would recommend it, very informative and accessible regardless of current job and experience Kerry Downs, Research and Self help worker, NELFT I recommend the day to colleagues every year Merville Ward, Retired Senior lecturer, London South Bank University Do make the effort to attend. The day is likely to be very informative and brings you up to date with a list of current research in the mental health area This is an annual event and it would be wonderful to meet yet more of you at next year s open day. There is valuable and diverse research going on throughout the Trust so put the R&D Open Day in your diary next year and join us to get more involved Anxiety and Depression 2010: Diagnosis and management Date: Oct 2010 Location: London Dementias 2011 Date: Feb 2011 Location: London For further details of these and other upcoming conferences visit A Practical Guide to Improving Mental Health in Primary Care Date: Wednesday 03 November 2010 Location: 76 Portland Place, London Delivering Quality Standards for Dementia Date: Wednesday 17 November 2010 Location: Manchester Conference Centre, Manchester For further details of these and other upcoming conferences visit CONFERENCES 2010 Fiona Horton R&D Administrator Research and Development at North East London NHS Foundation Trust 7

8 Research Grants and Scholarships available for more information please contact Carers views of the transition into long term care of individuals with dementia We would like to thank all the people who helped this research in many different ways. Special thanks to NELFT s Chief Operating Officer & Chief Nurse Stephanie Dawe who encouraged this being published in the R & D newsletter., Professor Martin Orrell, Sandeep Toot & Fiona Horton of R & D department. This summary is based on the paper: De Silva N, Curzio J. (2009) Transition into long-term care: the lived experience of carers of individuals with dementia. Mental Health Nursing 29(5) n Background. With an ageing population, dementia is a growing issue within mental health practice. Dementia affects about one person in twenty over the age of sixty-five years (Cunningham & Archibald, 2006), is on the increase with more than 1.7m people in the UK estimated to have dementia by 2051 (Darby 2007). Most of these individuals will eventually require residential care. The family experience of care placement has rarely been the focus of research studies. In a study by Kellett (1999) it was revealed that the focus is on the resident during the transition and that quite often professionals remain ignorant of the stresses experienced by family members. Gilley et al (2005) highlighted the importance of caregiver appraisals in the decision to institutionalise persons with dementia. Another study revealed that carers frequently experienced considerable guilt and emotional turmoil during the transition, but rarely received any help in dealing with their distress (Neill, 1989). Nolan et al (1996) stated there were extremely limited opportunities to explore the emotional dimensions of this major life decision. Throughout the available literature there was also a general consensus that the difficulties carers experienced were further compounded by lack of information, with the information given often limited to simply a list of homes (Dellasega, 1991). n Aim of the study. The overall aim was to identify the lived experiences of carers of individuals with dementia when they are moved from home to long-term care, utilising a qualitative approach. n Method. This phenomenological qualitative study used one-to-one interviews with ten carers of individuals with dementia who have recently entered residential care. Care co-ordinators of individuals with dementia facilitated access. n Ethical Considerations. Ethical approval was obtained from the local National Health Service (NHS) research ethics committee and research governance approval was obtained from Trust s Research and Development department. n Discussion. It is evident that the transition from their own home to a residential home is a major life event for both the older person and the family carer. Although they received support before the actual move, following the transition their emotional or social needs were not considered by the services. There was a real sense amongst them of a continuing need for support. Although this is a very small sample of carers from across the Trust, this study has given insight into their experiences which can inform our practice. Therefore, staff should consider when working with families during the transition into care of an individual with dementia that they be aware of the emotional burdens and stresses of the carers in the family. They should consider what additional support the carers need to ensure a better transition not just for the older person but also for the carer. n Conclusion. This study explored the life experiences of carers of individuals with dementia during the transition from home to long-term care. The results can inform our ongoing efforts to support these families at such a challenging time in their lives. 8 Research and Development at North East London NHS Foundation Trust

9 Author Neville De Silva - Senior Mental Health Practitioner - Havering OP-CMHT neville.desilva@nelft.nhs.uk Co-Author Professor Joan Curzio - Director of Practice Development - London South Bank University curziojl@lsbu.ac.uk Findings. Three themes emerged from the interviews: Patient issues: Can not do it any longer. Respondents identified a range of triggers that lead to their loved one finally needing to enter long-term care. Deterioration of behaviour was a major issue. My wife s dementia symptoms were on the rise and the deteriorating behaviour as a result of it [B]. Also a lack of family support played a part in the decision: I did not have much family support as I have no children [A]. GP advised me that I can not look after my wife on my own any further [G]. Dealings with mental health services: the good, the difficult and the supportive. All carers had regular contact with their CMHTs. Alternatives to long-term care were offered or provided to most of them prior to the decision for their loved one to enter long-term care. Unfortunately, several did not receive much support. Other than my son and his family I did not have any other help [G]. Getting the information they needed was a problem as well. Maybe I did not know what were the available services [H]. There were also challenges in finding the right place for their loved one. I know in some places residents live in a mess and this should be avoided, dignity is very important I think [A]. One carer has complained to the authorities about the lack of local facilities. I wrote to the relevant authority with copies to the psychiatrist and the social worker [I]. The experience of transition varied widely. While one carer reported an extended transition time. The transition process took time, perhaps due to ineffective communication between services or system failures I think [H]. Another felt it went very well. I must admit the timing of the intervention really suited me as professionals linked together. I did not have to wait months and months like I have heard from some others [F]. The emotional journey / Emotional impact on the carers All of these carers used the interview as a way to explore their emotional responses to what they had experienced. Many of them had not had any further contact with mental health support services. once my wife was moved I was just abandoned and until today, no one or any service made any form of communication or even a telephone call to me [G]. There was a sense that they had continuing needs. Perhaps an occasional phone call from services would have helped my feelings and thoughts, perhaps counselling for carers would be more appropriate [D]. Also, great sadness was expressed, especially by spouses. He loved this house and all the things in the house, I cry (tearful) every time I see his collection of antiques...every time I look at his side of the bed [A]. Almost every carer expressed feelings of guilt about some aspect of the situation. This included endlessly asking themselves if it was the right decision. Sometimes I feel like a culprit for agreeing to send my mum to long term care, on the other hand it is better as she is in a safer environment [C]. There was guilt as to how much time they now spend. By supporting the move, I feel guilty and I only visit her for half an hour now, but when she was at her own place I used to spend weekends with my mother (tearful) [F]. There was guilt about feeling better off not caring. First of all I am guilty about this, on the other hand I feel better off being on my own, as I can do what I want [B]. Reference Cunnigham, C. & Archibald, C. (2006) Supporting People with Dementia in Acute Hospital Settings, Nursing Standard vol.20(43)pp51-55 Darby, A. (2007) 1.7 million people will have dementia by 2051 [on line] Available from hi/health/ stm [Accessed 15 April 2007]. Dellasega, C. (1991) Care giving stress among community care-givers for the elderly: does institutionalisation make a difference? Journal of Community Health Nursing vol 8(4) pp Gilley, D., McCann, J., Bienias, J., & Evans, D. (2005) Caregiver Psychological Adjustment and Institutionalization of Persons with Alzheimer s Disease Journal of Aging and Health, vol.17 No.2, pp Kellett, U. (1999) Transition in care: family carer s experience of nursing home placement Journal of Advanced Nursing vol.29(6)pp Neill, J. (1989) Assessing People for Residential Care: A Practical Guide London : National Institute for Social Work Research Unit. Nolan, M. Walker, G., Nolan, J., Williams, S., Poland, F., Curran, M. & Kent, B. (1996) Entry to care: A positive choice or fault? Developing a more pro-active nursing response to the needs of older people and their carers. Journal of Advanced Nursing vol.24(2)pp Research and Development at North East London NHS Foundation Trust 9

10 For more information on Evidence Based Practice at NELFT please contact Dr Jennifer Wenborn by Activity for people with dementia in care homes Dr Jennifer Wenborn discusses activity provision for people with dementia in care homes the topic of research undertaken for her recently awarded PhD The need to engage in activity is intrinsic to all human beings and people with dementia are no exception, but they increasingly need the help of caregivers to participate. The number of people with dementia is rising, including those who live in care homes. It is estimated that three quarters of all care home residents have some degree of cognitive impairment and this percentage is also set to rise. The high level of inactivity in care homes has been reported since the 1950 s, along with the detrimental effects this has on residents quality of life. Despite evidence that activity participation enhances quality of life for residents with dementia by reducing challenging behaviour and depression, the quantity and quality of activity provision within care homes remains unacceptably low, especially for those with more advanced dementia. This is despite successive reports and policy directives highlighting the need for improvement, including the national dementia strategy (Department of Health, 2009). Enabling meaningful activity for people with dementia in care homes is a complex business that involves bringing together the: n Person. Activities need to be provided at the right level of challenge or fit to match the individual s current level of abilities, cognitive, physical and sensory. They also need to be personally meaningful and so based on the individual s life story, personality, beliefs and preferences. n Activity. There is evidence to support the use of a range of activities for people with dementia: cognitive stimulation therapy, physical exercise and activity, music, reminiscence therapy, multisensory stimulation, animal-assisted therapy, soft toys and dolls. n Enviroment. The design of the physical environment impacts on the behaviour and well-being of people with dementia. Environmental cues such as clocks and clear text / pictorial signs enhances orientation; appropriate seating, walking aids, the use of colour and good lighting enables exploration of the environment; multisensory stimulation facilitates interaction with the world and others. However it can be a challenge to provide a homely and stimulating setting whilst ensuring the health and safety of both residents and staff, for example: residents being encouraged to remain seated so as to avoid falling; or not being allowed into kitchen areas to carry out the daily living activities they consistently say that they would like to do. The organisational environment, in particular the role of the manager, is key to enabling an activity culture. Task oriented routines often take precedence, which is not surprising given the level of residents dependency. Activity provision is often seen as the domain of specialist practitioners or dedicated activity staff but to be effective, it needs to be integrated into day to day care provision. Thus, care home staff need the knowledge, skills and tools to provide meaningful activity at an appropriate level for residents with dementia. The Pool Activity Level (PAL) Instrument (Pool, 2008) was developed by an occupational therapist to enable carers of people with dementia to assess and facilitate their engagement in meaningful activity. A caregiver rated Checklist indicates the level of ability an individual has reached in terms of engaging in activity, be that: Planned, Exploratory, Sensory or Reflex. Guidance is provided as to how activities can be adapted and presented at the appropriate Activity Level, thus matching the individual s current capability. Used in conjunction with knowledge of the individual s life story, personally meaningful activity can then be provided. Trial registration: Identifier: ISRCTN Ethical approval was granted by the Barking & Havering LREC, reference number: 05/Q0602/8. 10 Research and Development at North East London NHS Foundation Trust

11 Dr Jennifer Wenborn, Clinical Research Fellow in Occupational Therapy University College London / NELFT, c/o R&D Department, NELFT j.wenborn@ucl.ac.uk The first phase of my PhD study was an assessment of the PAL Checklist s validity and reliability. A postal survey of 122 activity providers examined the Checklist s scope and utility; and achieved an excellent response rate of 84%. The results indicated good content validity, with evidence that appropriate items had been included, and that it is a practical, quick and easy to use tool. When completed alongside other gold standard measures with a sample of 60 older people with dementia receiving mental health services within NELFT, it demonstrated good criterion, concurrent and construct validity and internal consistency; and fair inter-rater and test-retest reliability It was therefore judged to be fit for purpose as a clinical and research tool (Wenborn et al., 2008a; 2008b). The second phase was a cluster randomised controlled trial using a matched pair design conducted in 16 care homes across London. The intervention was a defined occupational therapy programme, developed through my own clinical experience within continuing care settings and based on current evidence. It comprised: n Assessment of the care home environment: layout, access, outdoor areas; orientation cues, decor, use of colour, furniture; bathroom, toilet, dining areas; flooring, lighting, heating; activity areas, multisensory stimulation, assistive technology; homeliness and personalisation. The manager was provided with a brief summary and recommendations as to how the environment may be adapted and enhanced to enable residents engagement in activity. n An education programme, based on experiential learning principles, included: n Five, two hour, group education sessions for care staff, based on Five steps towards successful activity provision. n Individual coaching with each staff participant, together with their nominated residents, to demonstrate effective activity provision. n Facilitating the staff and manager team to develop their Activity Action Plan for continued implementation of the programme. n Staff participants completed work-based learning tasks such as: compiling a Life Story, completing the PAL Checklist and using the information gained to trial a range of appropriate activities with two resident participants each. Care homes varied in their uptake of the programme. Some staff consistently stated that there was not the time to complete such additional tasks and were sceptical about the value of providing activity to residents with more advanced dementia. This highlights the manager s key role in enabling change and developing an active care home. Those homes that did engage in the programme implemented a wide range of activities: listening to residents preferred music (opera, piano, jazz, rock & roll, steelband); enhanced personal care and grooming activities, such as hairdressing and manicure; participating in domestic tasks, for example, laying and clearing tables, washing and drying up; sensory stimulation using: rummage bags, sensory apron, food, massage, themed picture books; physical exercise, games, and walking - indoors, outside, going downstairs to feed the resident cat; creative activities such as drawing and making seasonal decorations; introducing soft toys and dolls; meeting spiritual needs; and establishing reminiscence and sensory spaces including a sensory bathroom. A staff participant commented, A good idea but time-consuming and time has to be put by to do it, but it is nice to know what your resident did and was capable of, it makes you see them more as people. Reference Department of Health. (2009) Living Well with Dementia: a national dementia strategy. London: Department of Health. Pool, J. (2008) The Pool Activity Level (PAL) Instrument for occupational profiling: a practical resource for carers of people with cognitive impairment. 3rd edition. London: Jessica Kingsley. Wenborn, J., Challis, D., Pool, J., Burgess, J., Elliott, N., Orrell, M. (2008a) Assessing the validity and reliability of the Pool Activity Level (PAL) Checklist. Aging & Mental Health, Vol. 12, (No. 2) pp Wenborn, J., Challis, D., Orrell, M. (2008b) Assessing the validity and reliability of The Pool Activity Level (PAL) Checklist. In: Pool, J. (2008) The Pool Activity Level (PAL) Instrument for occupational profiling: a practical resource for carers of people with cognitive impairment. 3rd edition. London: Jessica Kingsley. Chapter 3. n Acknowledgements. I would like to thank the following people within NELFT for their support and assistance throughout my PhD studies: n Professor Martin Orrell n The occupational therapy service especially: Emily Keeler, Sally Rooks, Jane Burgess and Nicola Elliott n Older people and colleagues who participated in the PAL study n Dr Carolyn Popham, Dr. Claudia Miranda, Dr. Ruchi Thakur, Homa Zahedi and Jacqueline Illes for collecting data n Research & Development department Also, my thanks to The College of Occupational Therapists and Hospital Savings Association for awarding me the COT/HSA 2005 PhD Scholarship. Research and Development at North East London NHS Foundation Trust 11

12 Publications Aguirre E, Spector A, Hoe J, Russell I, Knapp M, Woods RT and Orrell M. (2010). Maintenance Cognitive Stimulation Therapy for Dementia: A single-blind, multicentre, randomised controlled trial of Maintenance CST versus CST for dementia. Trials 2010, 11:46. Aguirre E, Spector A, Orrell M et al. (2010). Service users involvement on the development of a maintenance Cognitive Stimulation Therapy (CST) programme: A comparison of the views of people with dementia, staff and family carers. Dementia, in press. Burnell, K. J., Coleman, P. G., & Hunt, N. (2010). Coping with traumatic memories: WWII veterans experiences of social support in relation to narrative coherence of war memories. /Ageing and Society, 30/(1)/, / Burnell, K. J., Boyce, N, & Hunt, N. (2010). A Good War? Exploring British veterans moral evaluation of deployment. /Journal of Anxiety Disorders./ Online Caselli, G., Ferretti, C., Leoni, M., Rebecchi, D., Rovetto, F. & Spada, M. M. (2010). Rumination as a predictor of drinking behaviour: a prospective study. Addiction, 105(6), Caselli, G., Bortolai, C., Leoni, M., Rovetto, F. & Spada, M. M. (2010). Aspettative, credenze metacognitive e uso di alcool. Psicoterapia Cognitiva e Comportamentale, 16(1), KB, GC, MO, FP. (2009). /Individual peer support for family carers of people with dementia. Paper presented at /Making a Difference Convention 2009 hosted by the Community Services and Health Industry Skills Council Australia (Oct 2009) Donner, B., Mutter, R., and Scior, K. (2010), Mainstream In-Patient Mental Health Care for People with Intellectual Disabilities: Service User, Carer and Provider Experiences, Volume 23, Issue 3, Pages Hirani V, Serpell L, Willoughby K, Neiderman M, Lask B. (2010).Typology of obsessive-compulsive symptoms in children and adolescents with anorexia nervosa. Eating Weight Disorder., Vol. 15: e86-e89 N. 1-2 Kempton M, Ettinger U, Foster R, Williams S, Calvert G, Hampshire A, Zelaya F, O-Gorman R, McMorris T, Owen A and Smith M. (2010). Dehydration affects brain structure and function in healthy adolescents. Hum Brain Mapp. Advance online publication 24 Mar. DOI: /hbm Lloyd G and Foster R. (2010). HIV and AIDS. Royal College of Psychiatrists CPD Module. Miranda-Castillo C, Woods B, Orrell M. (2010). People with dementia living alone: What are their needs and what kind of support are they receiving? International Psychogeriatrics, 22, 4, Morgan C J A, Rothwell E, Atkinson H, Mason O, Curran VA. (2010). Hyper-priming in cannabis users: A naturalistic study of the effects of cannabis on semantic memory function. Psychiatry Research Parrett, Neil S. and Mason, Oliver J. (2010). 'Refugees and psychosis: A review of the literature', Psychosis, 2: 2, , First published on: 22 October 2009 (ifirst) Qazi A, Spector A & Orrell M. (2010). User, carer and staff perspectives on managing anxiety in dementia: A Qualitative study. Journal of Affective Disorders, doi: Spada, M. M., Georgiou, G. & Wells, A. (2010). The relationship among metacognitions, attentional control and state anxiety. Cognitive Behaviour Therapy, 39(1), Spada, M. M. (2010). Cognitive Behavioural Therapy for Problem Drinking: a Practitioner s Guide. London, UK: Routledge. Spector A, Orrell M & Aguirre, E. (2010). Translating research into practice: A pilot study examining the use of Cognitive Stimulation Therapy (CST) after a one-day training course. Non-Pharmacological Therapies in Dementia, 1 (1): Spector A, Orrell M & Woods B. (2010). Cognitive Stimulation Therapy (CST): effects on different areas of cognitive function for people with dementia. International Journal of Geriatric Psychiatry, doi: Startup M, Sakrouge R, Mason O. (2010) The Criterion and Discriminant Validity of the Referential Thinking (REF) Scale Psychological Assessment. American Psychological Association 2010, Vol. 22, No. 1, 65 69