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South West Dementia Review bulletin Issue 1 December 2009
www.southwestdementiapartnership.org.uk
In the South West there are currently around73,000 older people with dementia, a number set torise to over 102,000 by 2021 and increase of 40%.At present only 1 in 3 will get a diagnosis. Thereare around 1300 younger people with dementia.Two thirds of people with dementia are likely to beliving in the community, and one in three will nothave the support of a live in carer. Two thirds ofolder people living in care homes are likely to havedementia. 50% of people over 60 with Downssyndrome are likely to have dementia.
Working together to promote living well with dementia
Living well with dementia
Welcome to the first bulletin of the South WestDementia Partnership. The National DementiaStrategy was launched in February 2009 and thepartnership is supporting its implementation acrossthe South West. The partnership is made up of keyhealth and social care agencies and the Alzheimer'sSociety. The next year will be very significant inmoving forward in the South West so we havedecided to circulate quarterly bulletins to keeppeople informed.
This first bulletin provides a summary on the keyfindings of the partnership's recent review of servicesacross the South West. Future bulletins will considera range of issues including raising awareness, carehomes, hospital care and support for carers.
The South West review of services
In order to implement the National DementiaStrategy the major public agencies and the regionalAlzheimer's Society undertook an in-depth review ofthe 14 health and social care communities acrossthe South-West. This was to find out what serviceswere in place and how prepared areas were toimplement the National Strategy. In addition tocareful scrutiny of paperwork and performancefigures, 10 people from the review team spent twodays in each community visiting services, talking tostaff and listening to people with dementia and theircarers.
What we found
The review team found lots of examples of good andinnovative practice, with many highly motivated andcommitted staff doing their best to support peoplewith dementia and their carers. However theoverriding finding was that services were oftendisjointed. This was because they have not beenplanned in a way that provides a range of reliablecare options as a person's condition deteriorates.The review concluded that agencies needed to beclearer and bolder in the way they planned andcommissioned services.
The review noted that there was potential to supportpeople to remain at home and improve their qualityof life by diverting expenditure from emergency,residential and hospital care.
South West Dementia Partnership
General findings
Leadership to drive forward theNational Dementia Strategy isvariable. In some areas this needsto be strengthened.
There is huge variation across theregion and there are particulardifficulties in providing support inrural areas.
Services are based on historicalpractice rather than future needs.
Services are often disjointed. Healthand social care services need to bestreamlined so that they are moreefficient and deliver a consistent,joined-up service.
The contribution from voluntaryservices varies from excellent tonon-existent. Some voluntaryservices are heavily reliant on fundraising which makes themvulnerable.
Data collection about the amount,range and costs of existing servicesis weak. This is partly because it ishard to separate out servicessupporting people with dementiafrom generic and mental healthservices. This makes planningdifficult.
Some areas have some goodservices for younger people withdementia but in many areas theneeds of this group are overlooked.As a result they sometimes receiveinappropriate services alongsideolder people.
More specific findings
1. Most places do not have a well-plannedprogramme to raise public or professionalawareness. Low awareness amongst GPs andfrontline staff is a significant problem.
2. There are varied and sometimes confusingarrangements for providing memory assessmentsand follow-up advice.
3. In general there is a lack of reliable informationavailable for people.
4. There is a range of peer support networks withsome examples of highly valued memory cafes.
5. There is little use of direct payments for peoplewith dementia.
6. Specialist home care is being used in some areasalthough this can be expensive.
7. Hospitals tend to provide unsuitable care andenvironments for people with dementia and thereare delays in moving people back into thecommunity.
8. Support to keep people at home or leave hospitalquickly (intermediate care) does not seem tomeet the needs of people with dementia.
9. Very limited use is being made of assistivetechnology to support people living in thecommunity.
10. Care in care homes is variable. In some areasdementia link workers or champions have helpedto drive up standards of care.
11. There is little specific end of life support forpeople with dementia although a number of areashave adopted the general Gold StandardFramework.
12. Workforce planning and development is generallyweak across the South West.
South West Dementia Review bulletin Issue 1 December 2009
www.southwestdementiapartnership.org.uk
South West Dementia Review bulletin Issue 1 December 2009
www.southwestdementiapartnership.org.uk
Makinginvolvementcount
The South West DementiaPartnership has commissionedthe Alzheimer's Society to workwith communities to improvelocal engagement with, and theinvolvement of people who havedementia and their families andcarers.
For more information pleasecontact Debbie Donnison, [email protected].
Alzheimer's Society South WestArea Office, International House,Bank Road, Kingswood, Bristol,BS15 8LX.
Telephone 0117 967 2975.
What we will be doingIn the South West we have a multiagency strategy groupsupported by an implementation support team. The SouthWest Alzheimer's Society is ensuring that views of peoplewith dementia and their carers are at the heart of all we do.
Local action plans
Each health and social care community has produced anaction plan following its review.
The implementation support team will provide advice andsupport to ensure these plans are effective.
Regional work streams
The review has identified some common challenges acrossthe region. We will work with people with expertise andinfluence in these areas to identify solutions so that we canimprove services.
Examples include:Hospital careCare in care homesMemory assessmentGP awarenessCare at home /domiciliary careSupport to carers
Promoting good practice
The review identified some excellent initiatives in the SouthWest which others could learn from. We also have four SouthWest demonstrator sites trying out different ways ofsupporting people with dementia and their carers. We willshare lessons learned and best practice through our website.
Sharing national and international information
The implementation support team has many links outside theregion. We will make sure people are aware of nationalsources of knowledge and best practice guides by linkingthese through our website.
Living well with dementia“the South West way”The South West Dementia Strategy Grouprecently organised a conference, Living Well withDementia “the South West way”, to present thefindings of the South West Dementia Review andto discuss the way forward.
This very successful event provided anopportunity for stakeholders from a wide range ofagencies and background from the South West,to work together towards improving theexperience of people with dementia and theircarers, across health services, local authoritiesand the voluntary sector.
Lynne Dean, Deputy Regional Director for SocialCare, Department of Health South West, outlinedthe Department of Health implementationprocess and structure; and the progress made inthe South West on implementing the strategy.
Lezli Boswell, South West Dementia ReviewProject Lead and Chief Executive, CornwallPartnership NHS Trust, described the peerreview process across all 14 South West healthand social care communities in summer 2009,and the key themes arising from the reviews.
David Francis, Policy Implementation ProjectManager for Dementia, Quality and Carers,Department of Health South West, described theSouth West regional support programme fordementia.
Download the conference report and all of thepresentations given on the day fromwww.southwestdementiapartnership.org.uk/review/conference/
South West Dementia Review bulletin Issue 1 December 2009
www.southwestdementiapartnership.org.uk
Workhops and discussions
Dr Nicholas John, Consultant in Care ofthe Elderly, Royal United Hospital Bath,led a workshop on improving generalhospital care for people with dementia.
Angela Willis, Workforce Commissioningand Partnerships Manager,Gloucestershire County Council, led aworkshop on workforce development,raising awareness and competenceamongst generic older people’s teams.
Dr Paul French, GP and PEC Member,NHS Bournemouth and Poole, leddiscussion on engaging primary careservices in the dementia pathway.
What people have told usPeople with dementia and carers told us that they felt thatGPs knew little about dementia. They said it was oftendifficult to get a diagnosis and that they felt abandoned aftera diagnosis had been made. They said that they were oftenlet down by professionals and that they really valued thecontact they had with local support groups. They also feltcare in care homes was not as good as suggested byinspectors.
Carers said that they did not feel valued by hospital staff andand gave a number of examples of poor hospital practiceparticularly in relation ensuring that people with dementiawere able were able to eat their meals. Carers rarely had a carers’ assessment, and said they hadgreat difficulty in getting a break from their caring responsibilities.
People with dementia and carers said they wanted access to good information and regularsupport. They were hopeful that the new dementia advisors would really help them to know whatwas best and where to get support from.
A partnership to promote living well with dementia
South West Dementia Review bulletin Issue 1 December 2009
More information
If you would like to give us feedback, send usexamples of good practice or ask a questionplease contact us [email protected].
The South West Dementia Partnershipwebsite www.southwestdementiapartnership.org.uk provides further information about the
review along with examples of innovativepractice.
The SCIE website www.scie.org.uk provides arange of interactive and video-based materialincluding training exercises and researchinformation.
The National Dementia Strategy websitewww.dementia.dh.gov.uk provides access to thelatest national policies and research findings.
