Dementia friendly communities: learning from Yorkshire and beyond

Philly Hare Programme Manager 23 March 2015

Joseph Rowntree’s legacy Inspiring social change

• Joseph Rowntree (1836–1925): Quaker, successful businessman and philanthropist

• Wanted his money to be used to tackle the root causes of social problems

• Built garden village of New Earswick, York • This and other property is still managed

through the Joseph Rowntree Housing Trust (JRHT)

• 1904 Joseph Rowntree Foundation (JRF) established

Living with dementia – it’s complicated!

The condition • Perceptual and spatial disturbance • Confusion and disorientation • Communication • Reasoning, decisions • Continence, urgency • Sensory overload • Mood changes • Short concentration Ageing • Other impairments: sensory, mobility, frailty • Short term memory loss Social attitudes • Stigma, ridicule, fear and ignorance • Exclusion, isolation and loneliness • Low confidence and self-esteem • Ageism and sexism Leads to… • Anxiety • Negotiating relationships • Fatigue • Constant change

“No one can understand what it is like to have dementia unless they’ve got it. I would never have believed how complicated life could be”

Peter Jones, retired architect, York

Insp

iring

loca

l com

mun

ities

Dementia without Walls

Inspiring local communities: to be more aware and understanding of dementia

Projects in Bradford, York, N Ireland and NE Scotland Evaluations Yorkshire case studies Grants and awards JRF/JRHT Networks: Wales Dementia Action Alliances Prime Minister’s Champions European Foundations (EFID)

People with

dementia

Scoping: process and

report

Awareness raising

Small grants (JRF)

Local dementia

action alliance

Independent evaluation

City of York Council

commitment

Dementia friendly York

Dementia friendly Bradford Partnership: JRF/Bradford Council/

Alzheimer’s Society Community approaches involving ward

officers New DAA 2013 New “Face It Together” group Dementia Friends training Marginalised communities: faith, ethnicity,

sexuality Co-op stores

People with dementia at the heart and the start

Strengthening voice: supporting the collective engagement of people with dementia

The role of DEEP Building connections between involvement groups Collating and developing good practice Funding local groups and initiatives Brokering national opportunities Being a central repository Setting expectations

“Nothing about us without us”

Examples of engagement and influence National Commitment from Care Minister to meaningful involvement National Call to Action on language and dementia British Psychological Society guidelines Red Nose Day Twitter storm and TV Local Training staff Assessing grants Auditing shopping centre in Bradford Influencing new way-finding scheme in York Films and plays to raise awareness, in York

Thinking differently about dementia

Is dementia a feminist issue? Does it help to think of dementia as a disability? Should we always tell the truth? Should we think more about people's rights? How do negative language and images disempower?

challenging attitudes, understanding and behaviours

Key messages and learning

We all need to understand better what it means to live with

dementia. It’s not just about new things – every community and every person

already has many assets and so much to offer. It’s about the whole community – we can all contribute and we

can all gain. There is a real appetite for information: we are pushing at an

open door. Language and images have a real impact Networks aid communication and learning People with dementia can achieve much by acting collectively Involving people with dementia themselves is crucial

Further information on Dementia without Walls:

Programme web page: http://www.jrf.org.uk/topic/dementia-without-walls Key resources and reports: http://www.jrf.org.uk/work/workarea/dementia-resources http://www.jrf.org.uk/publications/dementia-friendly-yorkshire http://www.jrf.org.uk/publications/creating-dementia-friendly-york

DEEP http://dementiavoices.org.uk/ JRF Programme: Philly.Hare@jrf.org.uk