Dementia Disability and Hope – resources

Dementia, Disability and Hope is a new vision created with, and for, people with dementia.

You can download a copy of our Dementia, Disability and Hope leaflet for people affected by young onset dementia here.    

On this page, you will find other resources which will help you to understand this approach and put it into practice and details of organisations who may be able to offer you additional support and information. 

Practical resources 

Our dementia, our rights (2018) Innovations in Dementia
Written by, and for, people with dementia

The Dementia statements (2017) reflect the things people with dementia have said are essential to their quality of life.

The social model of disability as explained by Scope, the disability equality charity in England and Wales.

Equality act guidance (2021) for employers, workers, service providers, service users, education providers, in England, Scotland and Wales

The PANEL principles: Taking a human-rights based approach (2020)
Film: 2 hrs 38 mins – for organisations

Some background reading 

Hidden no more: Dementia and disability (2019) A report from the All-Party Parliamentary Group on Dementia

The dementia manifesto (2019) Hughes, J and Williamson, T (CUP)

Dementia and human rights (2018) Cahill, S (Policy Press)

Human rights and opportunities. Dementia as a disability? Implications for ethics, policy and practice. (2017) Alzheimer Europe  

Rights in mind: Thinking differently about dementia and disability. (2017) Shakespeare, T et al. Sage

Films and audio

A series of seven films (2022) made by Philly Hare at Innovations in Dementia for One Dementia Voice; contributors include people with dementia, family members, human-rights experts, academics and advisors. The web page also includes other rights related films and podcasts – click here.  

Organisations who can offer support  

Dementia UK
Hosts the Young Dementia Network and provides dementia information, resources and support via their website, Admiral Nurse Dementia Helpline, tel 0800 888 6678 and Closer to Home virtual clinic

Alzheimer Scotland
Resources for Scotland, including a helpline, tel 0808 808 3000 and information on rights 

Alzheimer’s Society
Resources for England, Wales and Northern Ireland, including a support line, tel 0333 150 3456 and information on rights 

British Institute of Human Rights
Does not provide advice but provides information on rights on their website

Equality Advisory and Support Service
If you think you might have been treated unfairly and want further advice, tel 0808 800 0082 

Innovations in Dementia
Works with other organisations to help people with dementia to keep control of their lives and be happy. Does not provide advice or information but runs DEEP, the UK network of Dementia Voices  

Liberty
Human rights organisation, campaigning for everyone to treated fairly, with dignity and respect. Tel 0800 988 8177

Rare Dementia Support
Information, advice and support for people affected by rare dementias, tel 020 3325 0828 

together in dementia every day (tide)
Supporting the family carers of people with dementia to champion their rights and create change, tel 0151 237 2669

Information for people with dementia

Information about Dementia, Disability and Hope for people who have a diagnosis of dementia

Click here

Information for family members

Information about Dementia, Disability and Hope for family members and supporters of people living with dementia

Click here

Information for professionals

Information about Dementia, Disability and Hope for health, social care and voluntary sector staff

 

Click here