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Dementia - supporting carers

Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness. This may have a profound social, emotional, physical and financial impact on carers, including increased risk of stress related illness such as depression.  Many carers feel that their views and needs are overlooked by health and social care professionals and that their right to support as partners in the provision of care is not well recognised. It is important that the needs of carers are recognised in supporting people living with dementia, at all stages of the illness and in all settings.

On this page you will find key organisations and resources which provide support, information and advice for carers.

In other sections of this website you can also:

The resources on this page are organised under the following headings:

Some of the resources on this page are in PDF format - see how to access PDF files.

Supporting organisations

Admiral Nursing DIRECT
This is a national telephone helpline, provided by experienced Admiral Nurses and supported by the charity Dementia UK. It offers practical advice and emotional support to carers and people affected by dementia.

Age UK
Age UK works to improve later life for everyone by providing life-enhancing services and vital support. Go to: Are you a carer? for free information and advice for carers.

Alzheimer's Society helpline
A helpline for carers and people with dementia, providing information, support, guidance and signposting to other appropriate organisations.

Alzheimer's Society talking point
Talking Point is an online support and discussion forum, for carers and anyone affected by dementia. It provides a place to ask for advice, share information, join in discussions and feel supported.

Alzheimer Scotland: Dementia helpline
A freephone helpline for people with dementia, those who care for them and anyone with a concern or query regarding dementia.

Carers Trust
Crossroads Care and The Princess Royal Trust for Carers merged to form the carers charity Carers Trust. The charity works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. The Network Partners aim to ensure that information, advice and practical support are available to all carers across the UK. See also: Northern Ireland, Carers Trust Wales, and The Princess Royal Trust for Carers, Scotland

Carers UK
This is a membership organisation, led by carers for carers. It provides high quality advice and information to carers and the professionals who support carers.  They have a website forum which is a virtual support club, open 24/7, where carers can talk to other carers and get help. See also: Northern IrelandScotland, and Wales.

Dementia Action Alliance. The Carers' Call to Action
The Carers Call to Action, supported by the Dementia Action Alliance, is highlighting the important role of carers as essential partners in care and asking organisations as well as individuals to commit to raising awareness and ensuring appropriate levels of support are available for carers.

Dementia UK: Uniting Carers
This is a national network of family carers, former carers, family members and friends of people with dementia. The aim of the network is to give carers the opportunity to raise awareness and increase people's understanding of dementia.

Elderly Accommodation Council (EAC)
Elderly Accommodation Counsel (EAC) is a national charity that aims to help older people, their relatives and carers make informed choices about meeting their housing and care needs.

Independent Age
This charity provides an information and advice service for older people, their families and carers, focusing on social care, welfare benefits and befriending services. This is integrated with local support, including one-to-one and group befriending schemes.

Relatives and Residents Association
This association exists to provide a consumer voice to promote the well-being and represent the interests of older people and their carers in residential care settings.

Wales Dementia Helpline 
This helpline offers emotional support to anyone, of any age, who is caring for someone with dementia as well as other family members, friends or carers. The service also helps and supports those who have been diagnosed with dementia.

Information sources

Alzheimer's Society: Factsheets
Carers can access a wide range of factsheets here. Topics are organised under headings such as: causes of dementia, progression and drug treatment; emotional and practical support; health and social care and legal and financial information. Visit: Carers: looking after yourself and Respite care

Bradford Metropolitan District Council (2011) Caring for dementia: exploring good practice supporting South Asian carers through access to culturally competent service provision
This guidance document produced with the support of a number of organisations, looks at the role of caring in the context of the South Asian community. It discusses some of the difficulties and barriers experienced by BME carers of people with dementia and how the cultural context can influence interactions with outside agencies and views of statutory service providers. The guide describes aspects of the culture that service providers need to take into account and some of the factors that need to be considered when providing culturally appropriate care. The resource is made available on the Meri Yaadain website.

Carers Trust (2013): A road less rocky - supporting carers of people with dementia
This report found that carers of people with dementia are not getting the support and advice they often desperately need. Of the carers surveyed, only 51 per cent said that they were given an opportunity to talk separately about their needs and how much care they felt able to provide. It makes recommendations to policy makers and commissioners on how to improve the support for carers of people with dementia. See also: Executive summary (PDF 262KB).

Health Scotland and Alzheimer Scotland (2011) Coping with dementia – a practical DVD for carers
This DVD has been made for people caring for someone in the middle to late stages of dementia. It is arranged into short films on different topics most of which can be accessed directly from the web.

NHS Choices – Dementia
This website provides general information on dementia and also advice for the wellbeing of carers. See: Your own wellbeing and Caring for someone with dementia

NICE Pathways: Dementia overview
This pathway brings together all related NICE guidance and associated products in interactive topic based diagrams are particularly relevant to this area. See: Support for carers, and Dementia: supporting people with dementia and their carers (PDF 151KB).

Stories and good practice examples

CIRCLE (Centre for International Research on Care, Labour and Equalities) (2011) New approaches to supporting carers’ health and well-being: evidence from the National Carers’ Strategy Demonstrator Sites programme
This report presents the findings of the national evaluation of the Department of Health’s Demonstrator Sites (DS) programme which aimed to improve carers’ health and well-being in line with the 2008 National Carer's strategy for England. The report discusses the impact and effectiveness of 25 multi-agency projects which were set up to explore new ways of supporting carers in England and illustrates with examples.

Healthtalkonline – Becoming a carer
The Health Experience Research Group at University of Oxford has created a database of personal and patient experiences using rigorous methods to collect and analyse these stories in order to provide a source for informed decision making. See also: Advice to other carers.

Mental Health Foundation: Raising awareness of self-directed support for people living with dementia
This suite of films is part of a range of resources launched in response to the findings of Dementia Choices, a two-year project which found that people with dementia, their carers and social care workers are in need of more practical information about how self-directed support, including direct payments and personal budgets, can help improve their care.

Nursing Times blog
In its Opinion section the Nursing Times has a blog written by a nurse about the experience of caring for her father who has Alzheimer’s – see:
Living with Alzheimer’s: accessing support (21 January 2012)
Living with Alzheimer’s: fulfilling a wish (28 January 2012)

SCIE Dementia Gateway, Dementia Good Practice Exchange: Stress reduction model for carers in dementia care
This account describes the Admiral Nursing service's adaptation of Stephen Zarit's stress reduction model to support family carers of people with dementia.

SCIE Dementia Gateway, Dementia Good Practice Exchange: Caring for carers of people with dementia
Cambourne Redruth Community Hospital runs an in-patient dementia crisis unit. This account decsribes how the service provided support to family carers based on carers' experiences and expressed needs.

Social care TV: Rapidly declining early-onset dementia: living at home with nursing supoprt
Jim Swift's account of his wifes experience illustrates the widespread effect of a very rapid deterioration, and explores the sense of loss and loneliness that can be part of the caring role. His account also highlights the need for skilled, experienced support for carers – in this case provided by an Admiral Nurse – together with access to regular breaks from the caring role.

Think Local Act Personal: Making it real for carers
The Making it Real programme encourages organisations that pay for or provide social care services to get real about improving people's lives. These tools have been produced in order to support this programme and include practical examples of what organisations are doing to transform their services, in partnership with the people who use them and will help people to understand and engage in the personalisation of the care and support agenda. See also: Making it real for people with dementia.

Standards

For relevant standard statements and associated guidance see:

Department of Health (2008) Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own
This sets out a vision for carers “that by 2018 carers will be universally recognised and valued as being fundamental to strong families and stable communities” with the aim of providing support tailored to individuals’ needs and access to integrated and personalised services.

NICE quality standards: Dementia standard 
See Statements 3, 4, 5, 6 & 10.

Scottish Government: Standards of care for dementia in Scotland
As a person with dementia:
I have the right to have carers who are well supported and educated about dementia.

For overarching resources and resources on other specific aspects of care see Supporting people with dementia.