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Supporting carers of people with dementia

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Joe?s Club is a support group facilitated by Admiral nurses, for carers and supporters of people with dementia. The club aims to bring carers together to share their experiences and give mutual support. Meeting others has been found to help reduce feelings of isolation (Cuijpers et al 1996) and Joe?s Club offers carers a wider range of experiences, choices and options, especially when dealing with difficult and challenging situations. This need to support carers of people with dementia is widely recognised within policy (DH 1999, 2004, CSIP 2005, NICE/CSIE 2006).

Joe?s Club is a support group facilitated by Admiral nurses, for carers and supporters of people with dementia. The club aims to bring carers together to share their experiences and give mutual support. Meeting others has been found to help reduce feelings of isolation (Cuijpers et al 1996) and Joe?s Club offers carers a wider range of experiences, choices and options, especially when dealing with difficult and challenging situations. This need to support carers of people with dementia is widely recognised within policy (DH 1999, 2004, CSIP 2005, NICE/CSIE 2006).

The care-giving role is very demanding and changes constantly (Armstrong 2000). Caring for a person with dementia is more stressful than other forms of care-giving and is often associated with physical and mental health difficulties for the care-giver (Ory et al 1999, Rose-Rego et al 1998, Coope et al 1995).

Jacques & Jackson (2000) identified group working as a valuable way of providing education, advice and support to carers. They state that meeting other carers can bring enormous relief and help them to deal with some of the challenges of the caring role. Two methodologically sound randomised trials show that support groups for carers can delay institutional admission of people with dementia by a mean of eleven months (Banerjee 2005).

Origins of Joe?s Club

Initially, the idea for Joe?s Club came from recurring themes that Admiral nurses identified through their reflective practice, clinical supervision and practice development. Carers would often ask:

  • Am I the only one in this situation?
  • Why do I feel so isolated?
  • How do other people cope?
  • Do other people have these feelings?

During individual clinical sessions, a significant number of carers said that meeting up with other carers would help them to address some of these questions. Health promotion literature recognises the value of delivering healthcare interventions to meet the expressed needs of individuals, as well as those identified by professionals or organisations (Bradshaw 1972, Hall 2002, Ewles & Simnett 1999).

Carers have been actively involved in the planning and design of Joe?s Clubs, utilising a proactive skill-sharing approach that recognises their individual experience and expertise (Wenger 2002, Smale 1993, Nolan 2002). The aims are:

To reduce the feeling of isolation often associated with caring

  • To promote a sense of connectedness through shared experience and mutuality

? To provide carers with a frame of reference

? To promote carer health and well-being, learning how to achieve a balance between their own needs and the people they care for

? To provide ongoing educational support that is timely, shared and designed to meet the needs of changing situations

  • To empower through knowledge and life-planning

? To promote carer involvement at a range of levels - using their own individual experiences to effect change in organisations.

The initiative commenced in June 2004 and to date we have established five Joe?s Clubs across North Warwickshire and Worcestershire. Our aim is to continue to develop Joe?s Club as a model of best practice. In July 2006 we carried out an initial evaluation to explore the effectiveness of the original aims and objectives, and Joe?s Club as a therapeutic intervention. Carer feedback was very positive and the views expressed included:

? 'Joe?s Club is a vehicle to help people talk and be open about situations?

? 'A secure feeling within the group, Admiral nurses can intervene and validate our concerns?

? 'Meet other carers who understand what you are experiencing?

? 'Removed my feelings of isolation?

? 'We have a special bond, an affinity group?

? 'Using each other as experts?

? 'Increased knowledge makes the process of caring easier?

? 'Helps you prepare practically and emotionally?

? 'Coming to terms with the dementia, able to share the highs and lows of the journey?

? 'Helps our sense of well being?

? 'It gives me strength and confidence?

? 'Can take some of the guilt away when we are feeling that we are not coping well with difficult situations?

? 'It has stopped me from having a nervous breakdown?

? 'Coming together makes us realise some of the wider issues that really affect us?

? 'It brings the experiences of all of the group together, we can support each other to make a difference?

The needs of carers of people with dementia are diverse; services should reflect this by offering a 'menu? or range of evidenced interventions. Working in partnership with carers is an important way of developing best practice and services, with Joe?s Club being an example of this process of exchanging expertise.

Authors:

Tony Brake r, Dementia Pioneer for dementia

Bob Graham, Admiral Nurse

Worcestershire Mental Health Partnership NHS Trust

Rachel Marshallsay, Admiral Nurse Team Leader

Coventry and Warwickshire NHS Partnership Trust

Helen Springthorpe, Admiral Nurse Team Leader

Worcestershire Mental Health Partnership NHS Trust

Correspondence Address:

tony.braker@nhs.netor bob.graham@worcs-mht.nhs.uk

References

Armstrong, M. (2001). the pressures felt by informal carers of people with dementia, Nursing Standard, Vol 15, No 17, pp47-53.

Banerjee, A. (2005). Improving dementia care in the West Midlands South SHA, Department of public Health WMS SHA, pp116-121.

Bradshaw, J. (1972). in Hall, A. (2002) Assessing the health promotion needs of informal carers Nursing Older People Vol 14 No 2 pp 14-18.

Coope, B. Ballard, C. Saad, K. et al (1995). The prevalence of depression in carers of people with dementia, International Journal of Psychiatry, Vol10, pp237-242.

CSIP (2005). Everybody?s Business, Department of Health, London.

Cuijpers, P. Hosman, C.M.H. Munnichs, J.M.A. (1996). Change mechanisms of Support Groups for Caregivers of Dementia Patients, International Psychogeriatrics, Vol.8, No4, pp575-587.

Department of Health (1999). Caring About Carers: A National Strategy for Carers, Department of Health, HMSO, London.

Department of Health (2004). Carers Equal Opportunity Act, Department of Health, HMSO, London.

Ewles, L. Simnett, I. (1999). Promoting Health: a Practical Guide (4th edition) Balliere Tindale, London.

Hall, A. (2002). Assessing the health promotion needs of informal carers Nursing Older People Vol 14 No 2 pp 14-18.

Jacques, A. Jackson, G.A. (2000). Understanding Dementia, 3 rdEd. Churchill Livingstone, London, pp-235-269.

NICE/CSIE (2006). Supporting People With Dementia and their Carers, NICE/CSIE, London.

Nolan, M. Ryan, T. Enderby, P. Reid, D. (2002). Towards a more inclusive vision of dementia care practice and research, dementia, Vol 1(2), pp193-211.

Ory, M.G. Williams, T.F. Emr, M. Lebowitz, B. Rabins, P. et al (1985). Families, informal supports, and Alzheimer?s disease: Current research and future agendas, Research on Aging, No7, pp623-644.

Rose-Rego, S.K. Strauss, M.C. Smyth, K.A. (1998). Differences in the perceived well-being of wives and husbands caring for persons with Alzheimer?s disease, The Gerontologist, Vol 38(2), pp224-230.

Smale, G. Tilson, G. Biehal, N. Mars, P. (1993). Empowerment, assessment, care management and the skilled worker, national Institute for Social Work Practice and Development Exchange, HMSO, London.

Wenger, G.C, Scott, A. Seddon, D. (2002). The experience of caring for older people with dementia in a rural area: using services, Aging & Mental Health, 6(1), pp30-38.

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