SIGN produce versions of guidelines that ‘translate’ guideline recommendations and their rationales, originally developed for healthcare professionals, into a form that is more easily understood and used by people with the condition, those with lived and living experience and the public. They are intended to:

• help people with the condition and carers understand what the latest evidence supports around diagnosis, treatment and self care
• empower individuals to participate fully in decisions around management of their condition in discussion with healthcare professionals
• highlight for people where there are areas of uncertainty.

A copy of the version of this guideline for people with lived and living experience and their carers is available from www.sign.ac.uk/patient-and-public-involvement/patient-publications.

Citizens Advice Scotland

Tel: 0800 028 1456

The Citizens Advice Bureau can give free, confidential, impartial and independent advice and information on a wide range of subjects, including benefits, debt and money advice, consumer issues, work-related problems and housing.

Department for Work and Pensions (DWP)

The DWP provides information about benefits and claims forms.

NHS 24

Freephone 111

NHS 24 is an online and out-of-hours phone service providing access to health advice and information 24 hours a day, 365 days a year.

NHS Inform

Tel: 0800 22 44 88

Scotland’s national health information service provides people with information on medical conditions, self-help advice and a directory of local support groups.

Age Scotland

Information and advice for people with dementia and their carers.

The Alliance

The Health and Social Care Alliance Scotland (the ALLIANCE) is the national third sector intermediary for a range of health and social care organisations

Alzheimer Scotland

Resources for people living with dementia.

• Charter of rights for people with dementia and their carers in Scotland
• Online self-management resources
• Webinars that examine how different allied health professionals support people with dementia.

Alzheimer’s Society

Information and support for people affected by dementia.

British Deaf Association

Dementia-specific resources for people who are deaf and living with dementia.

Chartered Institute of Housing

Scottish housing and dementia framework, designed to help organisations support people to live well with dementia.

Connecting people, connecting support

Resources and activities online for people with dementia, their family members and supporters.

Dementia Carers Count

Offers a range of free services that give family carers the opportunity to understand more about dementia and to connect with others in a similar situation. They offer practical advice on the reality and challenges of being a carer.

Dementia UK

Resources for people with dementia and their carers.

NHS Inform

Anticipatory care planning information.

NHS Inform

Dementia: information and support resources.

NHS Near Me

Near Me is a video consulting service that enables people to attend appointments from home or wherever is convenient.

Police Scotland

Carers, family or friends of a vulnerable person, or the person themselves, can fill in a Herbert Protocol form, which provides information to help the police if the person goes missing.

The Scottish Dementia Working Group

A national, member-led campaigning and awareness-raising group for people living with a diagnosis of dementia in Scotland.

Sight Scotland

Dementia and sight loss guide.

Young Dementia UK

Information and support for younger people with dementia and their families.

Resources for carers

Age Scotland

Dementia carers’ rights training.

Alzheimer Scotland

Resources for carers.

Alzheimer Scotland

NDCAN (National Dementia Carers Action Network), a campaigning and awareness raising group
for carers of people with dementia.

Carers Trust

Help and information for carers.

NHS Education for Scotland

Caring for a Person Living with frontotemporal dementia: a supportive series of resources for carers.

Scottish Dementia Research Consortium

Membership organisation including researchers, healthcare professionals, people living with
dementia and anyone else with an interest in research. 

Tide

Resources and information for carers

Living grief and bereavement. Resources for carers.

Moving Forward Toolkit. A guide for families and relatives involved in or supporting someone to
move into a care home.

The British Psychological Society

Dementia and People with Intellectual Disabilities – Guidance on the assessment, diagnosis,
interventions and support of people with intellectual disabilities who develop dementia.

Dementia Services Development Centre

Training and resources on general aspects of dementia and ageing through to more specialist areas
of dementia care and design.

Neuroprogressive disorders and Dementia Network (NDN)

Supports researchers from across a range of disciplines and deliver this research across Scotland
in a wide range of healthcare settings, including primary and community care, mental health
services and acute hospitals.

NHS Education for Scotland

Once for Scotland: Dementia learning site.

Scottish Government

Dementia in Scotland: Everyone’s Story.

• The dementia strategy for Scotland.

Promoting Excellence Framework

• For all health and social services staff working with people with dementia, their families and carers.

Scottish Government and Alzheimer Scotland

Connecting People, Connecting Support – Transforming the allied health professionals’ contribution
to supporting people living with dementia in Scotland.

Diagnosis and postdiagnostic support

Healthcare Improvement Scotland

Information on diagnosis and postdiagnostic support including a quality improvement framework,
dementia care co-ordination package and information on involving unpaid carers

Care delivery and communication

Alzheimer Scotland

Let’s Talk About Dementia Blog.

British Deaf Association

Dementia-specific resources for healthcare professionals.

British Psychological Society

Dementia and People with Intellectual Disabilities - Guidance on the assessment, diagnosis,
interventions and support of people with intellectual disabilities who develop dementia.

Care Inspectorate

My life, my care home
Study on the experiences of people living with dementia in care homes in Scotland.

Healthcare Improvement Scotland

• A guide to making general practice dementia-friendly.
• Information and case studies on care co-ordination for people living with dementia and their carers.
• Dementia in hospitals improvement toolkit.
• My new home – Guidance for staff supporting people with an intellectual/learning disability and advanced dementia moving into a care home.

Dementia-Friendly Dentistry: Good Practice Guidelines

Guidance for dental professionals to help understand dementia and its implications for dental
practice, and adapt their patient management and clinical decisions accordingly.

LGBT Health and Wellbeing

A guide to support health and social care staff to develop their practice in working with lesbian, gay, bisexual and trans (LGBT) people with dementia.

Living with Dementia (Down’s Syndrome Scotland)

A booklet about dementia for families and carers of a person with Down’s Syndrome.

NHS Near Me

Video and links to educational resources for healthcare professionals about using Near Me video consulting.

Pavillion

Supporting People with Learning Disabilities and Dementia Self-study Guide.

Scottish Government

Evaluation of the effectiveness of the ‘8 Pillars’ model of home-based support.

Supporting Derek

A practice development guide to support staff working with people who have an intellectual disability and dementia.

Therapies and interventions

Music in Hospitals & Care

Community musicians who visit hospitals and care homes.

The Kings Fund

Developing supportive design for people with dementia. A range of resources to enable hospitals, care homes, primary care premises and specialist housing providers to become more dementia-friendly.

NHS Education for Scotland

• Educational and training resources for psychology and psychological interventions for people with Dementia.
• Matrix: psychological therapies delivery guide.

NHS Lothian Arts Therapies Service: Arts and Self Care Resources

Resources to support music, art and wellness interventions.

ReConnect, Scottish Chamber Orchestra

Music-making project for people living with dementia and their carers.

Anticipatory care planning

Healthcare Improvement Scotland

Anticipatory care planning toolkit.

NHS Inform

Anticipatory care planning information.

University of Edinburgh

Resources to Support Anticipatory Care Planning Conversations using the REDMAP (Ready, Expect, Diagnosis, Matters, Actions, Plan) framework.

Palliative care

Healthcare Improvement Scotland

• Quick guide on palliative care identification tools for use with people living with dementia.
• Scottish Palliative Care Guidelines, provide a practical, evidence-based or best-practice guidance on a range of common clinical issues.

NHS Education for Scotland

Framework for Palliative and end of life care: enriching and improving experience.

Research

Neuroprogressive Research Network

Deliver cutting edge clinical research in neuroprogressive conditions and dementia across Scotland.

Scottish Dementia Research Consortium

Membership organisation including researchers, healthcare professionals, people living with
dementia and anyone else with an interest in research.

School teaching resources

Alzheimer’s Society

School teaching resources to make it easy to teach and learn about dementia.Needs and unmet needs from postdiagnostic support

The checklist for provision of information provides examples of the information people with dementia and their carers may find helpful at the key stages of their journey.