Dementia care

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A Road Less Rocky - Supporting Carers of People with Dementia 

In May 2012, Carers Trust commissioned the Social Policy Research Unit at the University of York, and Firefly Research & Evaluation, to undertake research to ‘understand more about the caring journey undertaken by carers of people with dementia and the challenges they face, from initial concerns that there may be something wrong to experiences at the end of life and afterwards’.

England and Wales

The Mental Health Act 2007 amends the previous 1983 Act, which governs the compulsory treatment of certain people who have a mental disorder.

In 2015 the government published a new Code of Practice for the Mental Health Act (1983), Carers Trust published a briefing on the key points and what this means for carers.

Carers Trust Mental Health Act Code of Practice 2015 Briefing

Mental Capacity Act 2005

The Mental Capacity Act sets out how people who lack capacity now or may do in the future should be treated and their rights protected.

Scotland

Mental Health (Care and Treatment) Scotland Act 2003

This Act outlines how individuals with a mental disorder are to be treated in community and inpatient settings. 

Adults with Incapacity (Scotland) Act 2000

The Adults with Incapacity (Scotland) Act provides safeguards and standards for the rights of adults who are assessed to lack capacity to make decisions.

Northern Ireland

The Mental Health (Amendment) (Northern Ireland) Order 2004

This Order outlines how individuals with a mental disorder are to be treated in community and inpatient settings.

Current Mental Health Research

Research specifically on mental health caring is more sparse, but examples can be found on the sites below.

 

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Toolkit

Triangle of Care in Wales

Carers Trust Wales and the Royal College of Nursing are delighted to have been able to explore an adaptation of the Triangle of Care to meet the needs of carers of people with dementia in acute hospitals in Wales.
Area of Care: 
Secondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Health care
I work with: 
Adult carersYoung adult carersYoung carersFamilies
Caring for: 
AdultsOlder adults
Location: 
Wales
Date Revised: 
Wednesday, May 9, 2018 - 13:15
Body: 

The Triangle of Care, Carers Included: A Guide to Best Practice in Dementia Care, Wales Edition

Carers Trust Wales has been extremely keen to build on the success of the Triangle of Care model in England and Scotland  by advocating and supporting the implementation of the Triangle of Care standards for carers accessing services in local health boards across Wales.

Funded through the RCN Foundation, the recent development of a Triangle of Care for dementia Wales edition has been a collaborative effort between the Royal College of Nursing and Carers Trust Wales. It has been developed from the original Triangle of Care for dementia, which was co-designed with carers, people with dementia and practitioners, with the support of Uniting Carers and Dementia UK. 

Overview

According to the National Assembly for Wales Research Service, dementia is the top health concern in Wales and yet Wales has the lowest rate of diagnosis across all UK nations at just 43%. There are an estimated 45,000 people in Wales currently living with dementia and this figure is predicted to rise steadily over the next decade bringing with it dramatic financial and human impact. The cost to the Welsh economy is an estimated £1.4bn a year which includes costs to the NHS and social services, although research shows that people with dementia, carers and their families currently bear around two-thirds of the costs themselves (National Assembly for Wales Research Service, 2016).

In Wales, 50% of health boards have shown an active interest in implementing a Triangle of Care model and support is growing within other health boards throughout Wales. We hope the new Welsh edition for best practice in dementia care can lead to consistent carer involvement and support across all health and social care services irrespective of where and when a person is being treated. The partnership between Carers Trust and the Royal College of Nursing has been incredibly positive and we hope that this can be replicated across health services with nurses and carers working as partners.

Further information

For further information on the Triangle of Care in Wales contact Gill Winter, Carers Partnership Manager, Carers Trust Wales.

 

Downloads: 
PDF icon Triangle of Carer Carers Included: A Guide to Best Practice for Dementia Care, Wales editionPDF icon Triongl Gofal Cynnwys Gofalwyr: Canllaw i Arfer Gorau ar gyfer Gofal Dementia, Argraffiad Cymru
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Good Practice

Supporting carers of people with dementia in black, Asian and minority ethnic communities

A good practice example of working with carers of people with dementia from diverse communities by the Dementia Information and Support for Carers (DISC) service hosted by Sandwell Crossroads Birmingham
Area of Care: 
Mental HealthPhysical illnessSpecial education needsSpecialist servicesDay centreRehab CentreHospitalCare homesDementia care
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingPharmacy ServicesCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning
I work with: 
Adult carersFamilies
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 13:45
Body: 

DISC Dementia information and support for carers

The Disc Service was launched 11 years ago, it is hosted by Sandwell Crossroads and funded by Sandwell and West Birmingham, Cross City, South Central CCG’s, and Birmingham City Council through the Birmingham Bettercare Fund

The service originally operated in West Birmingham, but had funding extended to cover the entire Birmingham City Council area.

The service is focused on supporting carers from the diverse communities in the Birmingham area. The DISC service prides itself on being proactive in recruiting staff from local black, Asian and minority ethnic (BAME) communities who have both the language skills and understand the cultural sensitivities.

The service supports over 400 carers and offers Iiformation, advocacy and support for carers, though one-to-one contact and successful weekly information and support groups.

It also offers a signposting and referral service into other local statutory and voluntary sector services.

Examples of the type of help and support carers have receive:

  • Accessing respite
  • Liaising with district nurses, occupational therapists and social workers.
  • Continence advice and support.
  • Advice in managing changing and unusual behaviours.
  • Finding the right care such as day centres, care homes and care agencies.
  • Talking to the wider family.
  • Advice on benefits and carers' rights.
  • Information on the Mental Capacity Act.
  • Information on lasting power of attorney

DISC's strengths

  • Building relationships with carers over a long period of time.
  • Stepping in to offer support before a crisis develops.
  • Bridging the gap between clinical diagnosis and families coping alone.
  • Making carers feel welcome – 14 of them formally volunteer in supporting other carers.
  • Being led by carers, listening to carers and developing services to meet need.
  • Feeling passionate about the service.

Further information

For more information on the service contact Jo.Moon@sandwellcrossroads.org or visit the Sandwell Crossroads website.

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Research

A Road Less Rocky Supporting Carers of People with Dementia

A Road Less Rocky is a report from Carers Trust that found that carers of people with dementia are not getting the support and advice they often desperately need.
Area of Care: 
Mental HealthDay centreRehab CentreHospitalCare homesPrimary CareSecondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingPharmacy ServicesCarers servicesInformation and adviceCommissioning for carersSocial careCommissioning
I work with: 
Adult carersYoung adult carers
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 14:00
Body: 

The report found that there were a number of critical points along a carer’s journey where they would most value information and support. These critical points include:

  1. When dementia is diagnosed.
  2. When the carer takes on an 'active' caring role.
  3. When the capacity of the person with dementia declines.
  4. When the carer needs emotional support and/or a break from caring.
  5. When the person with dementia loses their mobility.
  6. When the person with dementia has other health problems.
  7. When the carer has to cope with behavioural problems.
  8. When the carer's own circumstances change.
  9. When the person with dementia becomes incontinent.
  10. When decisions about residential care and end of life care have to be made

We have designed a toolkit around these ten points,the issues carers face at these points and what will make a positive difference. It has been produced to sit alongside A Road Less Rocky and gives guidance to professionals who come in contact with carers. The toolkit is useful for anyone who works with or treats patients with dementia and is therefore likely to come into contact with carers. 

A Road Less Rocky – Supporting Carers of People with Dementia complements the Triangle of Care Carers included: A Guide to best Practice for Dementia Care. This document describes how meaningful involvement and inclusion of carers can lead to better care for people with dementia, identifying six key standards required to achieve better collaboration and partnership with carers.

Although the terminology and legislation referred to in this toolkit applies to England the standards and rationale are applicable across the whole of the UK.

Further information

Find further information and download the full report A Road Less Rocky – Supporting Carers of People with Dementia (PDF, 962KB).

Download the toolkit PDF iconA Road Less Rocky: Making the Road Less Rocky for Carers, A Guide on how to Support Carers of People with dementia

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Good Practice

Older Carers Toolkit

This toolkit is targeted at commissioners of health and social care in England and aims to highlight the needs of carers aged over 60 and to show tried and tested ways they can be supported.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsSpecialist servicesPrimary CareSecondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health careCarers servicesSocial careCommissioning
I work with: 
Adult carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, April 27, 2018 - 13:15
Body: 

This toolkit is targeted at commissioners of health and social care in England and aims to highlight the needs of carers aged over 60 and to show tried and tested ways they can be supported.

It shines a spotlight on particular issues most likely to impact on older carers. This can help inform commissioning to properly and most cost-effectively support them. It will also help commissioners fulfil duties to prevent, reduce and delay needs and to support older carers under the Care Act 2014.

Further information

Download the toolkit PDF iconCaring About Older Carers (PDF 307KB)

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Toolkit

5. Tools to support services with limited capacity to signpost schools to Young Carers in Schools

This step, taken from Supporting Young Carers in Schools: A Toolkit for Young Carers Services, provides key information for young carers services who have limited capacity to signpost schools to Young Carers in Schools.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary CareDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCommissioning for young carersEducation
I work with: 
Young adult carersYoung carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, September 15, 2017 - 16:15
Body: 

This is section 5 of the tools in Supporting Young Carers in Schools: A Toolkit for Young Carers Services

For tools to support your work to signpost schools to the Young Carers in School programme in your local area, please see below: 

FileTool 1: Template text for use on websites (Word 948KB)

PDF iconTool 2: Young Carers in Schools impact inographic (PDF 162KB)

Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Young Carers Services
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Toolkit

4. Tools to support services to gather impact data from schools

This step, taken from Supporting Young Carers in Schools: A Toolkit for Young Carers Services, provides key information for services who want to gather impact data from schools.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary CareDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCommissioning for young carersEducation
I work with: 
Young adult carersYoung carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, September 15, 2017 - 16:00
Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Young Carers Services
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Toolkit

3. Tools to support services to build and maintain engagement with schools

This step, taken from Supporting Young Carers in Schools: A Toolkit for Young Carers Services, provides key information for schools who want to build and maintain engagement with schools.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary CareDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCommissioning for young carersEducation
I work with: 
Young adult carersYoung carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, September 15, 2017 - 15:45
Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Young Carers Services
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Toolkit

2. Tools to support services to raise the local profile of Young Carers in Schools

This step, taken from Supporting Young Carers in Schools: A Toolkit for Young Carers Services, provides key information for young carers services who want to raise the local profile of the Young Carers in Schools programme.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary CareDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCommissioning for young carersEducation
I work with: 
Young adult carersYoung carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, September 15, 2017 - 15:00
Body: 

This is section 2 of the tools in Supporting Young Carers in Schools: A Toolkit for Young Carers Services. 

For tools to support your work to raise the profile of the Young Carers in School programme in your local area, please see below: 

FileTool 1: Template letter to local authorities (Word 953KB)

FileTool 2: Template letter to Regional Schools Commissioners (Word 954KB)

FileTool 3: Template letter to dioceses (Word 953KB)

FileTool 4: Template letter to local branches of education sector trade unions and associations (Word 951KB)

PDF iconTool 5: Education sector trade unions and associations newsletter articles/blogs promoting Young Carers in Schools (PDF 154KB)

FileTool 6: Template letter and newsletter articles to school networks promoting Young Carers in Schools (Word 954KB)

FileTool 7: Template text about Young Carers in Schools for use on websites (Word 950KB)

PDF iconTool 8: Young Carers in Schools impact infographic (PDF 162KB)

FileTool 9: Template letter to governors (Word 954KB)

FileTool 10: Template letter to headteachers (for young carers services which are currently in partnership with schools) (Word 952KB)

FileTool 11: Template letter for headteachers (for young carers who have not engaged with schools previously) (Word 953KB)

Office presentation iconTool 12: Young Carers in Schools introductory powerpoint (PP 1,996KB)

FileTool 13: Checklist of key messages to include in communications with schools (Word 950KB)

FileTool 14: Checklist of resources to hand out to schools (Word 948KB)

PDF iconTool 15: Young Carers in Schools A4 promotional leaflet (editable) (PDF 190KB)

FileTool 16: Young Carers in Schools quote bank (Word 951KB)

FileTool 17: A checklist to support governing bodies to evaluate the effectiveness of their school's provision (Excel 19KB)

Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Young Carers Services
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Toolkit

1. Tools to support services to secure funding for local school engagement work

This tool, taken from Supporting Young Carers in Schools: A Toolkit for Young Carers Services, provides key information for young carers services on gaining funding for school engagement work.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsDementia care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCommissioning for young carersEducation
I work with: 
Young adult carersYoung carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, September 15, 2017 - 14:45
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