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
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
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
4. Maintain or improve the well-being of the care
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
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
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?”
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.
(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.
- 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
Contact The Author: Philippa Hare can be
e-mailed at firstname.lastname@example.org