Approximately 700,000 people in the UK have dementia and it has been estimated that by 2025 there will be one million people with dementia in the UK rising to 1.7 million by 2051 (Alzheimer’s Society, 2007). Around a third of people with dementia are severely affected and need help with activities of daily living, and of these 50% live at home with a carer. People with dementia frequently have complex needs because cognitive impairment often coexists with additional mental health problems, disabilities, physical illness and social problems. Dementia is a national priority and it has a vast impact on Health and Social Care Services. A recent review estimated the direct cost of Alzheimer’s disease to be between £17 and £18 billion per year (Alzheimer’s Society, 2007) greater than stroke, heart disease and cancer combined. Indeed the Dementia Strategy (Department of Health, 2009) has recently emphasised the importance of providing more stimulation in care homes, more peer support and improved help for carers, and better care before and after hospital. There is an urgent need to find more useful and effective interventions to help reduce the impact of dementia on people with dementia, carers, and society.

In 2007 the National Institute for Health Research (NIHR) awarded £1,981,952 to Professor Martin Orrell(1) and a group of co-applicants(2) to fund a 5 year research programme: 'Support at Home - Interventions to Enhance Life in Dementia (SHIELD)' aiming to reduce disability, improve outcomes, and enhance quality of life for people with dementia and their carers. This review will focus on three interventions: Maintenance Cognitive Stimulation Therapy (MCST); an Experienced Carer Package (ECP) to support carers; and an intensive Home Treatment Package (HTP). Additional conditions of NIHR funding include staff development, production of training materials, evaluation of training, implementation of interventions in the National Health Service, and dissemination work. Service user and carer involvement will also play a vital role within SHIELD providing vital insight and expertise. The programme will be managed by Professor Martin Orrell and Dr Juanita Hoe, UCL.

Maintenance Cognitive Stimulation Therapy

Professor Bob Woods, Professor Esme Moniz-Cook, Dr Aimee Spector, Elisa Aguirre, and Amy Streater

Cognitive Stimulation Therapy (CST) is group intervention for people with dementia, which has been shown to improve cognition and quality of life (Spector et al., 2003), and is grounded in a person centred framework (Brooker, 2004; Kitwood, 1997). It is has been shown to be cost-effective and compares favourably to dementia drug treatments (Knapp et al., 2006). NICE guidelines on dementia (NICE-SCIE, 2006) recommend that all people with mild/moderate dementia should be given the opportunity to participate in a group cognitive stimulation programme.

CST comprises 14 facilitated group sessions held twice weekly. Facilitators introduce themes from the CST protocol, such as food, childhood, and sounds for the group to discuss with the aim of improving memory, concentration, and linguistic and executive abilities (Spector et al., 2006). Recent research indicates that when CST is run for an additional 16 weeks, significant improvements in cognitive function are found (Orrell et al., 2005). Consequently an RCT of MCST is the focus of the first project within the SHIELD programme, and commenced in January 2009.

Main outcomes are cognition and quality of life, and secondary outcomes are mood, behaviour, communication and activities of daily living. In addition, this study will develop an RCT to investigate the efficacy of two methods of training individuals to deliver MCST; 1 day training plus a manual/workbook/DVD vs. 1 day training plus a manual/workbook/DVD plus outreach support. Outcomes will focus on adherence to the intervention and competence of facilitators.

Experienced Carer Programme

Dr Georgina Charlesworth, Dr Fiona Poland, and Dr Karen Burnell

Being a family carer is stressful, and carers of people with dementia experience greater strain and distress than carers of other older people (Ory et al., 1999). The needs of family carers have had an increasing profile over the past decade. The national strategy for carers has recently been updated (Department of Health, 2008), and the needs of carers of people with dementia were recognised in the joint NICE-SCIE guidelines on dementia (2006).

This programme builds on previous work of the Health Technology Assessment funded Befriending and Costs of Caring (BECCA) project concerning the effect of befriending by volunteers on carers for people with dementia (Charlesworth et al, 2008). The results of this study suggested that lay volunteers may have a marginally positive impact in the longer term, but literature regarding peer support for carers of people with dementia or other chronic illnesses indicates that matching carers with peers may be more effective. In this context, peers are defined as people who are experientially similar, rather than demographically similar.

The SHIELD team will work jointly with voluntary organisations in North East London to match experienced family carers with newer family carers. The aim of the project is to investigate the impact of a peer intervention on the carers’ quality of life, general mental and physical well-being, perception of the caregiving role and relationship with the person they care for, and caregiving self-efficacy. Quality of life and perceptions of relationships will also be studied from the perspective of the person with dementia. In addition, the impact of being an experienced carer will be assessed in terms of quality of life and meaning in life.

The ECP is being developed in consultation with service users, service providers, and academic researchers through a series of consultations. The intervention is grounded in principles of self-efficacy to increase carers’ sense of mastery through ‘signposting’ to existing services and resources, and providing social support. As part of the study, ECP will also be combined with the ‘Remembering Yesterday, Caring Today’ (RYCT) Reminiscence group therapy (Bruce & Gibson, 1998; Schweitzer, 1998; Schweitzer & Bruce, 2008), in which the carer and person with dementia participate together. After the development of the ECP intervention and combination with RYCT, a four arm RCT will be conducted to compare ECP with RYCT, the combined ECP/RYCT intervention, and Treatment as Usual (TAU). Since this project is being developed with a view to being run by the voluntary sector. A cost-effectiveness analysis (CEA) will be conducted from a social perspective.

Home Treatment Programme (HTP)

Professor David Challis, Professor Esme Moniz-Cook, Dr Juanita Hoe, Dr Claudia Miranda, and Sandeep Sandhu

It is anticipated that the increasing number of people with dementia will lead to an increasing demand for informal and formal sources of care. Most people with dementia live in the community and many countries emphasise the importance of caring for highly dependent older people at home for as long as possible (Australian Health Ministers Conference, 2006; Eagar, 2007; Hofman, 1991; Royal Commission on the Funding of Long Term Care, 1999; Tsutsui & Muramatsu, 2007; Wimo & Norlund, 2007). Consequently, psychosocial interventions should focus on meeting and reducing needs and improving quality of life for people with dementia living at home.

The introduction of Crisis Resolution and Home Treatment Teams (CRHTT) in mental health care across England has been made mandatory (Department of Health, 2000, 2001). The main aim of CRHTTs is to reduce the use of acute psychiatric beds and to offer quick access to services through the provision of rapid emergency assessment at the time of a crisis, 24-hour availability, and short-term management of the crisis (Johnson, et al., 2004, 2005; Onyett et al., 2008). Despite Government policy that Crisis Resolution Teams (CRT) should treat older people on the basis of need, this was not found in practice (Cooper, et al., 2007; Department of Health, 2004, 2005).

This project will develop, evaluate, and implement an HTP for dementia. The HTP will function as an advisory protocol/care pathway and will include a combined risk assessment/care-planning tool, a manual, and training package. It should enable professionals to intensively support and manage people with dementia experiencing crises at home, and prevent admissions to hospital or care homes.

The development of the HTP will be based on the outcome of a systematic review and ongoing consultations involving professionals, academics, care workers, the voluntary sector, carers, and people with dementia. A pilot to test the HTP will be undertaken with people with dementia living in the community who have been identified as being at serious risk of requiring institutional/hospital admission. Finally, a multicentre exploratory RCT of HTP vs. TAU for dementia will be carried out. The primary outcomes will include quality of life, unmet needs, number of psychiatric hospital admissions and number of inpatient bed days.

Analysis and outputs

Each of these approaches will be carefully evaluated to assess the potential benefits for people with dementia and their carers. The data management and analysis will be conducted by NWORTH(3) under the direction of Professor Ian Russell, whilst economic analysis will be led by Professor Martin Knapp.

The team will disseminate the research findings within academic and clinical communities through conference attendance and high quality publications, as well as to service users through relevant organisations and literature. We will also produce training manuals which will be made widely available to help other services implement the interventions.

For more information please contact Professor Martin Orrell (m.orrell@ucl.ac.uk) or Dr Juanita Hoe (j.hoe@ucl.ac.uk).

References

Alzheimer’s Society (2007). Dementia UK: The Full Report. Available at http://www.alzheimers.org.uk/downloads/Dementia_UK_Full_Report.pdf. Retrieved 17/02/09.

Australian Health Ministers Conference. (2006). In: National framework for action on dementia: 2006-2010. Sydney: NSW Department of Health.

Brooker, D. (2004). What is person centred care for people with dementia? Clinical Gerontology, 13, 215-222.

Bruce, E., & Gibson, F. (1998). Remembering Yesterday, Caring Today: Evaluators' Report. London: Age Exchange.

Charlesworth, G. M., Shepstone, L., Wilson, E., Thalanany, M., Mugford, M., & Poland, F. (2008). Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. Health Technology Assessment, 12, 1-78.

Royal Commission on the Funding of Long Term Care. (1999). With respect to old age: long term care? Rights and responsibilities. (Cmnd 4192-­1). London: The Stationery Office.

Cooper, C., Regan, C.,Tandy, A. R., Johnson, S., & Livingstone, G. (2007) Acute mental health care for older people by crisis resolution teams in England. International Journal of Geriatric Psychiatry, 22, 263-265.

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Department of Health (2008). Introducing Caring with Confidence: Making a Positive Difference to the Lives of Carers. Department of Health: London

Department of Health (2009). Living well with dementia: A National dementia strategy. Department of Health: London.

Eagar, K., Owen, A., Williams, K., Westera, A., Marosszeky, N., England, R., & Morris, D. (2007). Effective caring: a synthesis of the international evidence on carer needs and interventions. Centre for Health Service Development, University of Wollongong.

Hofman, A., Rocca, W. A., Brayne C, Breteler, M. M. B., Clarke, M., Cooper, B., et al. (1991). The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings. International Journal of Epidemiology, 20, 736-748.

Johnson, S. Bingham, C. Billings, J. Pilling, S. Morant, N. Bebbington, P., et al. (2004). Women’s experiences of admission to a crisis house and to acute hospital wards: A qualitative study. Journal of Mental Health 13, 247-262.

Johnson, S., Nolan, F., Hoult, J., White, I. R., Bebbington, P., McKenzie, N., et al (2005). Outcomes of crises before and after introduction of a crisis resolution team. British Journal of Psychiatry, 187, 68-75.

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.

Knapp, M., Thorgrimsen, L., Patel, A., Spector, A., Hallam, A., Woods, B., Orrell, M. (2006). Cognitive stimulation therapy for people with dementia: Cost effectiveness analysis. British Journal of Psychiatry, 188, 574-580.

NICE-SCIE. (2006). Dementia: supporting people with dementia and their carers. Guideline - draft for consultation. NICE-SCIE.

Onyett, S. Linde, K. Glover, G. Floyd, S. Bradley, S., Middleton, H. (2008). Implementation of crisis resolution/home treatment teams in England: National survey 2005-2006. Psychiatric Bulletin, 32, 374-377.

Orrell, M., Spector, A., Thorgrimsen, L., Woods, B. (2005). A pilot study examining the effectiveness of maintenance Cognitive Stimulation Therapy (MCST) for people with dementia. International Journal of Geriatric Psychiatry, 20, 446-451.

Ory, M., Hoffman, R., Yee, J., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist, 3, 177-185.

Schweitzer, P. (1998). Reminiscence in dementia care. London: Age Exchange.

Schweitzer, P., & Bruce, E. (2008). Remembering Yesterday, Caring Today: Reminiscence in dementia care – a guide to good practice. London: Jessica Kingsley Publishers.

Spector, A., Thorgrimsen, L., Woods, B., Royan, L., Davies, S., Butterworth, M., & Orrell, M. (2003). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: Randomised Controlled Trial. British Journal of Psychiatry, 183, 248-254.

Spector, A., Thorgrimsen, L., Woods, B., & Orrell, M. (2006). Making a difference: An evidence-based group programme to offer cognitive stimulation therapy (CST) to people with dementia: Manual for group leaders. UK: Hawker Publications.

Tsutsui, T., & Muramatsu, N. (2007). Japan's universal long-term care system reform of 2005: Containing costs and realizing a vision. Journal of the American Geriatrics Society; 55, 1458-1463.

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(1) Director of Research and Development, North East London Foundation Trust (NELFT) and Professor of Ageing and Mental Health at University College London (UCL).

(2) Professor Bob Woods (University of Wales, Bangor), Professor Ian Russell (University of Wales, Bangor), Professor Esme Moniz-Cook (University of Hull), Professor David Challis (University of Manchester), Professor Martin Knapp (LSE), and Dr Georgina Charlesworth (UCL).

(3) North Wales Organisation for Randomised Trials in Health.