Short break services for people with dementia and their carers in Scotland

Executive summary

1. The purpose of this report is to campaign for more short breaks of better quality for people with dementia and their carers. It is aimed at people with dementia and their carers to encourage them to make local representations for improvements in short break services. It is also directed at health boards and local authorities, policy makers, service providers, planners and commissioners to challenge them to do more to improve short break services.
2. At present there are approximately 61,300 people with dementia in Scotland, of whom 1,622 are under the age of 65.
3. Caring for someone with dementia is in many cases extremely demanding and can have a physical and emotional impact upon the carer.
4. Short break services look after a dependent adult temporarily, for any period from a few hours to a few weeks. They can be provided in the person’s own home; a day care centre; in someone else’s home; in hospital; or in a care home. They are most effective when they are a component within a package of care that has been well designed to meet the needs of the carer and the person with dementia. It is estimated that of the 36,800 people with dementia living in the community, 25,400 (69%) should be receiving some short breaks.
5. Research indicates that short breaks can improve the health of carers and act as a safety valve in their relationship with the person with dementia. In addition, some short breaks can delay the person with dementia’s entry into long-term care and have benefits such as a positive impact on their mood and well-being.
6. Dementia: the agenda for respite care by Alzheimer Scotland in 1995 reported that the equivalent of 1 in 5 people with dementia and their carers received a break of one week a year and 66% of short-stay care for people with dementia was in hospital. This report uses more recent statistics to see if the situation has improved.
7. Short breaks are a vital element of community care. Recent policies have highlighted their importance and brought more funding to the area.
8. Using interim results from a new survey, it was calculated that in 2002/3 the equivalent of 27% of people with dementia living in the community received one week’s short break. Only the equivalent of 17% of people with dementia living in the community had a break of one week provided by a service that specialised in caring for people with dementia. The average percentage of people with dementia living in the community who received overnight short breaks was 12%.
9. The number of people with dementia receiving home care increased slightly between 1999 and 2003. Approximately 10% of people with dementia living in the community received the service in 2002/3.
10. The number of older people receiving day care decreased between 1998 and 2002. Approximately 7% of people with dementia living in the community received the service in 2001/2.
11. The number of older people (this data is not broken down by category of service user) receiving residential short breaks increased between 2000 and 2003, from 11.7 to 12.6 people per 1,000. The number of residential short break nights for older people increased by 0.5% during this period to a total of 245,128 nights.
12. The number of Old Age Psychiatry hospital day patient places and attendances decreased between 1998 and 2003. Approximately 4% of people with dementia living in the community received this service in 2002/3. The number of overnight hospital short breaks also decreased by 18% between 2000 and 2001 to 3,359.
13. The majority of people with dementia living in the community requiring constant or regular support and supervision do not receive short breaks. The highest percentage approaching the 69% level of need is the 12% for overnight short breaks.
14. The number of short breaks that is currently provided to people with dementia and their carers is insufficient to meet their needs. In addition, there is a large variation in the levels of provision between local authorities.
15. Some carers do not use short break services, for reasons ranging from problems with transport, quality, or the person with dementia not wanting to attend.
16. A lack of information can be a major barrier to accessing short break services.
17. The quality of some short breaks could be improved by having dementia specific services and having specialist services for particular groups, such as younger people with dementia and people with challenging behaviour.
18. There are also a number of practice issues that would help to improve short breaks such as having flexible hours of operation and having continuity of care workers. Exploring the use of other models of short breaks, such as befriending and supported holidays, will help to increase the variety of breaks available.
19. In ten years from now, Alzheimer Scotland hopes that every person with dementia and carer who needs a short break will be assisted to have one.

Recommendation 1: More short breaks are needed.
Recommendation 2: Short breaks should be made more effective.
Recommendation 3: More consistent and detailed information about short break provision is needed.

Errata

Due to final findings from Murphy and Archibald (2004) differing from interim findings, the following errata apply.

· Page 3, point 8, line 3: replace 17% with 13%.
· Page 15, section 4.1, paragraph 3, line 1: replace 15,835 with 10,857.
· Page 15, section 4.1, paragraph 3, line 1: replace 2,262 with 1,551.
· Page 15, section 4.1, paragraph 3, line 3: replace nine with thirteen.
· Page 15, section 4.1, paragraph 3, line 6: replace 6,416 with 4,684.
· Page 15, section 4.1, paragraph 3, line 6: replace 17% with 13%.
· Page 15, section 4.1, paragraph 4, line 4: insert “nine” after “breaks in the”.

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