Dementia experience toolkit - useful links and further reading

Articles, blogs and diaries by people living with dementia

Chris Roberts and Jayne Goodrick in Patient engagement in dementia: extra support leads to informed contributions, 2018

Wendy Mitchell – Fingers versus voice…:  reflections on the experience of living with dementia and the difference in ability to communicate verbally or through typing.

George Rook - Self-managing dementia...the perfect oxymoron - on being left to get on with things alone, and the need for supported self management and social prescribing. 

Dementia Diaries – diagnosis themed videos 

Dementia Diaries – health and care themed videos 
 

Articles, blogs and diaries by carers, family and friends of people living with dementia

Anna, a Dementia Revolutionary - Anna has found that fundraising for dementia charities has helped people around her to start talking about their own experiences of being affected by dementia.

John's campaign blogs - this campaign is to have carers welcomed in dementia care

Julia's Dementia Blog - Julia's mum is living with dementia after having mini-strokes. The family have had a bad experience of using a care home and mum has returned to living at home with Julia.

Tommy on Tour - Tommy cared for his mother who had vascular dementia. Tommy collects the stories of dementia carers to raise awareness of their experience with health and social care professionals.
 

Evaluation tools suggested by commissioners

Helen Sanderson Associates (UK)
 

Guidance, handbooks and quality standards

Deaf Dementia Experience in Scotland: toolkit and British Sign Language version

Deaf with Dementia: from misdiagnosis and isolation to a future of good practice, DCAL

Dementia: good care planning - information for primary care providers and commissioners, NHS England (2017)

Dementia, NICE Quality Standard

Dementia Partnerships: Sharing knowledge and learning across the Well Pathway for Dementia

Dementia Roadmap: local information to help primary care staff support people affected by dementia

Developing qualitative research questions: a reflective process - Jane Agee, International Journal of Qualitative Studies in Education (2008)

House of Care, NHS England: about the shift towards a model of care for long-term conditions, which takes into account the expertise and resources of the people with LTCs and their communities to enable people to achieve the best outcomes possible.

Human Rights in Healthcare: A Framework for Local Action, Department of Health

Integrated Personal Commissioning: Emerging Framework, NHS England

Involving people in health and care guidance, NHS England

Liaison and Diversion Manager and Practitioner Resources for Service User Involvement, NHS England

Measuring Patient Experience, The Health Foundation

Patient and Public Participation in commissioning health and care – statutory guidance for clinical commissioning groups and NHS England

People’s experience in adult social care services – improving the experience of care and support, NICE Guideline 

Questionnaire design - Pew Research Center

The NHS Constitution Domain 4: Ensuring people have a positive experience of care, NHS England

The Patient Experience Handbook: NHS Institute for Innovation and Improvement

The Triangle of Care, Carers Trust

Universal Personalised Care: implementing the comprehensive model, NHS England
 

Initiatives

By us, for us guides - guides created by a group of people with dementia and/or carers to help people with dementia with their well-being and managing daily challenges.

DEEP Guides written by and for people living with dementia, for use by DEEP (Dementia Engagement and Empowerment Project) groups and other organisations.

Dementia-Friendly Hospitals Charter, National Dementia Action Alliance: guidelines for hospitals to improve the experience of visits for people living with dementia, by ensuring that people living with dementia and carers are involved in their care every step of the way.

Dementia Services - findings from across the Healthwatch network: over 1,000 people told Healthwatch about their experiences of dementia care services, including during 121 visits to care homes.

ENRICH Toolkit for Care Home Staff

Improving Personalisation in Care Homes, SCIE

Making Involvement Count, Alzheimer's Society and South West Dementia Partnership: resource pack aimed at giving specific information, advice and top tips to support people with dementia to get involved in activities whilst recognising their current abilities. The resource pack cards have been written by people living with dementia, individuals, carers, volunteers and staff.

Measuring outcomes in Dementia Services: Health Innovation Network (South London): using the former version of the Dementia Statements to measure patient experience.

My Home Life: resources including a toolkit from an initiative by National Care Forum, Help the Aged and City University, London.

National Evaluation of Partnerships for Older People Projects: Executive Summary: evaluation found that a wide range of involvement and co-produced projects resulted in improved quality of life for participants and considerable savings for health and care services, as well as better local working relationships.

PRESENT Co-producing improved  wellbeing with people  living with dementia  in East Dunbartonshire

Social Care Innovation Network - developing practical solutions to scaling innovations

What's it like to live in a care home? Findings from the Healthwatch Network: briefing about areas for improvement identified from findings in 140 reports created as a result of conversations and observations with residents, carers and staff in care homes across 63 local authority areas.
 

Involvement Toolkits (not dementia-specific)

Influencing and Participation Toolkit, Mind

Scottish Health Council
 

Published Research Studies relating to methods and approaches featured in this resource

List

Videos

Good experience, prevention and the benefits to the person with dementia, their carers, and other people, of living in extra care housing.