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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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Full of Care Report - Young Carers in Wales 2009

In 2009 the Children's Commissioner at the time, Keith Towler, launched new research and recommendations for Young Carers Services in Wales.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Primary careHealth and wellbeingCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young carers
Location: 
Wales
Date Revised: 
Friday, May 4, 2018 - 10:15
Body: 

The report, entitled Full of Care, aimed to show the barriers young carers face achieving the rights laid out by the United Nations Convention of the Rights of the Child, such as the right to education, to relax and play and to have their views respected. 

The document included the research project All Right Gov' that Powys Carers Service carried out in Summer 2008, travelling all over Wales to meet other young carers projects and listening to their experiences.

The report made a number of recommendations to both Welsh Government and local service boards as well as local authorities, health and The Department of Children, Education Lifelong Learning and Skills.

Early identification and intervention

The fact that 54% of young carers in this survey felt that they only got support in a crisis underlines the importance of early identification and intervention. However, the young carers who took part in this survey were those who had been identified and were receiving support. 

Much of the existing guidance is intended to prevent crises arising through early identification and intervention. It is clear though that there is often a considerable gap between national policy and local practice.

The message ‘Too little, too late’ still resonates today.

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Time to be Heard Event: Nottingham University 2014 Evaluation Report

An evaluation of the Carers Trust Time to be Heard campaign event that took place in Nottingham in 2014 for young adult carers.
I work in: 
Education
I work with: 
Young adult carersYoung carers
Location: 
Whole UK
Date Revised: 
Tuesday, May 1, 2018 - 15:30
Body: 

As part of the Time to be Heard campaign, Carers Trust organised an event for 200 young adult carers (aged 16-25) and their support workers to get their voices heard by the decision makers who could reduce barriers to further and higher education.

Some key themes emerged:

  • Young adult carers need tailored information.
  • Young adult carers are concerned about disclosing their caring status.
  • Young adult carers are worried about going to university.
  • Young adult carers face distinct barriers to accessing further education.

The event also provided information and dispelled myths about access to college and university.

Read the evaluation of the event

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A survey of the experiences and needs of male carers

Husband, Partner, Dad, Son, Carer? is the report of a survey of the experiences and needs of male carers, carried out by Carers Trust and the Men’s Health Forum at the start of 2014.
Area of Care: 
Mental HealthPhysical illnessSecondary CareAcute Care
Outcomes: 
WellbeingCarer awarenessCarers in employment
I work in: 
Carers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning
I work with: 
Adult carersParent carersFamilies
Caring for: 
Young peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 10:15
Body: 

Caring is often seen as a ‘female’ issue but it is something that affects a large number of men too. The 2011 Census found that in England and Wales more than four in ten carers are male (42.3%) - amounting to 2.44 million men providing care, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction.

Despite their vast number, there has been little research to understand the experiences of these men or the vital role that they play in their families.

Carers Trust and the Men’s Health Forum sought to learn more about men’s experiences of caring, the impact it has on their lives and the support services they feel would be helpful to them. A total of 609 male carers from across the UK took part in a survey which included 119 fathers, all of whom were caring for a child or children with a disability, long term conditions or mental health or addiction issue. PDF iconDads care too: A survey of the experiences of fathers who are carers showcases the experiences of these dads.

Key findings

  • 119 dads responded, of all ages.
  • The highest proportion (72%) care for a son or daughter with a learning disability or autism.
  •  Nearly 20% had been caring for 21 years or more.
  • 35% cared alongside being in employment. 40% of those spent 60 or more hours caring per week.
  • A third of dads reported that they never get a break.
  • 46% said caring had a negative impact on their mental health, and 43% said it had a negative impact on their physical health.
  • Almost three quarters said they missed out on spending time with friends and family members as a result of being a carer.
  • The most common support wanted but not received was breaks from their caring role.
  • 55% said they felt the needs of male carers were different from female carers.
  • Many felt their role as a carer was not recognised, or that services were not designed in a way which met their needs.

Further information

Download Dads Care too.

Read the reportPDF iconHusband, Partner, Dad, Son, Carer: A Survey of the Experiences and Needs of Male Carers

Exexutive Summary (PDF iconEnglish language version(PDF, 1,728KB).

Executive Summary (PDF iconWelsh_language version(PDF, 728KB).

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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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Retirement on Hold

Our Retirement on Hold report highlights some of the challenges faced by older carers and makes recommendations to improve their experience now and in the future. Thank you to all the carers and Network Partners who contributed.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsSpecialist services
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: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 13:45
Body: 

Key findings from our report

  • Care coordination – carers said they were spending too much time, and became stressed and anxious when trying to organise care and support for the person with care needs. 
  • Carers are caring for someone else when they have their own age-related health condition.
  • The pressures around carers feeling they had a 'duty to care' – the Care Act recognises that caring should be a choice.
  • Lack of appropriate replacement care to enable carers to take a break. 

Our key recommendations

  • Access to a 'care coordinator' – many older carers felt this would help them navigate the health and care system. It is recognised that with limited resources this may not be feasible, however, earlier referral to a carer organisation may help improve the situation for carers. 
  • Appropriate and timely access to information and advice about support available locally, nationally and UK wide. This information would need to recognise that not all older carers are able to access the internet.
  • Improved access to appropriate and good quality replacement care.

Further information

You will find our more information and our Retirement on Hold report on Carers.org.

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