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Philippa Hare is senior researcher with the independent health and social care consultancy Acton Shapiro. She is interested in issues around carers, mental health and disability. Before her current post, she established and managed the Princess Royal Trust Carers Centre in Scarborough and Ryedale.

More than half a million people in the UK are affected by dementia, (1) with most cared for at home by a relative or friend. (2) Short breaks can help reduce the stress commonly reported by carers, and the government has recently supported their development through the carers special grant.

This article summarises a recent study commissioned by the NHS, (3) on the effectiveness of short breaks. Although the main part of the study examined research, a consultation with stakeholders, including carers and 20 major statutory and voluntary organisations, provided a complementary perspective.

The consultation found that respite services do not function in isolation. The Effective Respite Pyramid (below)shows the factors, characteristics and services that impact on the delivery of effective breaks. It is only when the bottom two tiers of the pyramid are in place that carers are likely to experience a short break that maintains or improves their health, well-being or quality of life - and that of the care recipient.

There are eight factors that underpin effective short breaks, which are the base of the pyramid.

• Knowledgeable and supportive doctors.
• Appropriate management of the condition.
• Responsive social services.
• A fair and understandable benefits and charging system.
• Accessible information.
• Supportive carers' networks.
• Helpful family, friends and neighbours.
• Well co-ordinated services.

Carers outlined the factors needed to make short breaks effective, these are the second tier of the pyramid.

1. Recognise the importance of assessment and ongoing reviews.

An assessment should focus on how a short break may help both care recipient and carer achieve the outcomes they want. Follow-up contact and reviews should be built into the care plan so the carer never feels isolated and abandoned.

2. Meet the needs and circumstances of the individual carer.

A carer should always have: access to respite in different settings, at different times and for different durations; the option of a break with or without the care recipient; confidence in the quality of care provided.

3. Tailor the service to the age, culture, condition of illness of the care recipient.

In the early stages of the illness, when a carer needs a break to help them retain contact with friends and outside interests, the care recipient might prefer one-to-one support, either at home or in the community.

Conversely, residential respite might be more appropriate for those in the later stages. All services need to be sensitive to culture, taking account of practical issues such as language and diet, as well as where people feel "at home". Younger people with dementia need an age-appropriate environment and access to activities they will enjoy.

4. Maintain or improve the well-being of the care recipient.

For the carer to use and benefit from respite, it must be a positive experience for the care recipient. Their familiarity with surroundings and staff, access to key workers, a high user to staff ratio and awareness among staff of new techniques are all important factors in this experience.

5. Recognise the importance of appropriately trained and caring staff.

Carers stress the importance of personal qualities in staff, such as empathy, friendliness, motivation and enthusiasm. A trusting, supportive relationship with staff can help a carer to feel "psychologically free" to have a break. Professionals highlight the need for core competences in care management, recognising symptoms and side effects, and understanding various conditions about dementia. Some argue the case for specialist staff.

Staff should use respite stays to monitor the care recipient's condition, and advise the carer at each stage of the illness. Above all, staff should recognise and understand the context of the relationship between care recipient and carer, helping them "move on" and accept change as the illness progresses.

6. Understand the significance of affordable services.

A carer often has no idea how long their situation will last or how much it will cost, and may well have responsibility for all financial decisions. Carers are conscious of protecting the care recipient's financial resources, while typically undervaluing their own need for a break. So carers are deterred from accessing short breaks if they feel they cannot afford them or are concerned about reducing a limited pool of savings.

Finally, a good short break helps improve and maintain carers well-being and health, the top tier of the pyramid.

Carers see the benefits of short breaks in broad terms such as the effects on the general quality of life for themselves and those they care for. They focus on what the time and space enables them to do, rather than on specific health benefits. But having time for work, rest, sleep, friends and interests is likely to have an impact on the carer's well-being and quality of life.

Our study suggests that future research on the effectiveness of short breaks should start with carers rather than respite services. Taking a group of carers and examining the perceived benefits, advantages and disadvantages of different types of short breaks would shed light on:

• The impact of using respite care on carers' health, well-being and quality of life.
• Their choices about using or not using such services.
• What trade-offs they make in these choices.

Such research may provide important information on how the whole system can best meet the respite needs of carers and care recipients. Perhaps we should be asking not "What makes an effective individual respite service?" but "How can we add quality to people's lives through good breaks?"

Abstract:

This article looks at the findings of the consultation part of a recent study on what makes an effective short break for carers of people with dementia. The consultation highlighted that the effectiveness of respite services depends on a range of factors and characteristics, including assessment, trained and caring staff, perceived affordability and consideration of the individual needs of the carer and care recipient.

References:

(1) Department of Health, A National Service Framework for Older People, London, Department of Health, 2001.

(2) M Watkins and S J Redfern, "Evaluation of a new night nursing service for elderly people suffering from dementia", Journal of Clinical Nursing, 6, 6, 85-94, 1997.

(3) H Arksey et al, Review of Respite and Short Breaks for Carers for People with Dementia, University of York, funded by NHS Service Delivery Organisation 2003.

Further Information:

• R Blunden, How Good is Your Service to Carers: A Guide to Checking Quality Standards for Local Carer Support Services, The Kings Fund, 2002.
• Alzheimer's Society: www.alzheimers.org.uk or 020 7306 0606.
• Department of Health, Caring about Carers: A National Strategy for Carers, London: Department of Health, 1999  l Crossroads: the largest charity in the world, providing "in the home care" for carers. www.crossroads.org.uk

Contact The Author: Philippa Hare can be e-mailed at philly@actonshapiro.co.uk