More choice, voice and control for people living with dementia 18 april 2016 final

More Choice, Voice and Control for people living with dementia -

Exploring Co-production in Practice

1 May 2023 1

Dementia andCommunity Care Conference

April 20, 2016 Melbourne

Nothing about me without me www.carriehayter.com

Introduction • Changing policy landscape

– Choice, voice and control – People living beyond dementia

• Co-production with people living with dementia and their care partners – Challenges and opportunities – Practical steps

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About Carrie Hayter Consulting

1 May 2023

Putting people who use social care at the centre of their supports and funding

– Research & Evaluation • Co-design and co-production

– Education & Training – Public Speaking – Writing

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01/05/2023 5

Shifting Policy Landscape –Personalisation

Passive Clients

Active Citizens

Block funding Individualised

funding

Rigid inflexible, bureaucratic

services

Flexible responsive services


6Nothing about me without me www.carriehayter.com

Personhood ‘Consumer’ as

Purchaser Citizen

Social and political rightsEconomic

purchasing power

Relationship between client and

professional

Client Citizen – Consumer

Agency

Mechanisms for enacting ‘choice’ and ‘voice’

Market mechanisms via competition

(LeGrand, 2007)

Managing self interest

(LeGrand, 2007) and voice

mechanisms

Enable ‘choice’ through ‘voice’ mechanisms

(Simmons et al 2011)

Hybrid Choice and

voice mechanism

s

Policy narratives and language• “Dementia epidemic”

– Sufferers– Burden of caregiving – Moral panic

• Living beyond dementia (Swaffer, 2016)– Away from ‘prescribed disengagement’ to social

model of supporting people living beyond dementia


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Social Model of Support Swaffer 2016

Diagnosis/ confirmation of diagnosis

Assessments (eg Driving, medication occupational therapy )

Rehabilitation

Strategies to manage and support disabilities (eg

technology, buddy/mentor)

Advanced Care Directives

Continued meaningful

engaging activities

Source: Swaffer, K., (2016:165) What the hell happened to my brain? Jessica Kingsley Publishers, London and Phiiladelphia

Support for a terminal progressive chronic

disease

Aged Care

Living beyond Dementia • Benefits of physical exercise for people living with

dementia (Alzheimers’ Australia, 2014, Neville et al 2014)

• Neuroplasticity of the brain (Doidge, 2007, 2015)• Diet and brain function (Perlmutter & Loberg, 2014)• Living with grief and loss (Kubler Ross, 1981, 1998,

Swaffer, 2016) • Relate, Motivate, Appreciate – Montessori Approach

(Alzheimer’s Australia 2013)

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Care Partners • Timely information and support

– Mentoring • Flexible models of support

– Empower person living with dementia – Empower care partners

• Who, what, when and how of support

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1 May 2023 12

Coercing

Educating

Informing

Consulting

Engaging

Co-designing

Co-Producing

Co-delivery

Co-Ownership

Ladder of Participationand Engagement

Doing for

Doing to

Doing With

Doing for themselves

Adapted form Think Public, 2015

Consumer Directed Care?

Co-production with people living beyond dementia

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Source: downloaded from http://www.scarletdt.com/wp_WWNT/co-production/what-is-co-production/

People who use services collaborate in their production (Needham et al, 2009)


What is co-production?• Active participation of people who use social care

services (Needham & Carr, 2009)– ‘Nothing about us without us’

• Using the assets of people who use social care services to improve services (Needham and Carr, 2009)– Broadening and deepening public services (New

Economics Foundation)• Mutual self-help between people who use services or

have shared common interests (Boyle et al, 2006)


Principles of Co-Production• Active citizenship and participation

– Identification of issues and coming up with collective solutions

– Dialogue and negotiation between stakeholders– Services as enablers and not fixers


What is not Co-Production?• Consultation and engagement• Involvement in design without participation in

the solutions – People need to be involved in the design of the

solutions • Individualised budgets (New Economics

Foundation)– People need to be involved in the solutions


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Co-production in Social Care

Compliance (Descriptive)

People who use services and carers collaborate to

achieve outcomes

Offer little substantive change for people who

use services

Support (Intermediate)

Fuller recognition and valuing of people who come together to co-produce outcomes

New responsibilities on the people who use social

care services, they can still be exploited

Transformation Service user as expert.

Creating new relationships between

service users, peer relationships and

organisationsMost successful co-

production has occurred outside the service

system


Source: Needham, C. and Carr. S., (2009). Co-production: an emerging evidence base for adult social care transformation In Social Care Institute for Excellence (Ed.). United Kingdom Social Care Institute for Excellence downloaded from http://www.scie.org.uk/publications/briefings/briefing31/

http://www.scie.org.uk/publications/briefings/briefing31/

Critiques of Co-production • Downplays power imbalances between service users

and services (Barnes, 2009, Beresford, 2009, Ottman, 2011)

• Reproduce power imbalances and reproduce inequality (Needham & Carr, 2009)

• Changing the role of the state, justifies cost cutting• Significant institutional and staff resistance

(Needham & Carr, 2009)


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Co-production as transformation

www.wavertonhub.com.au https://www.youtube.com/watch?

v=oAchY7giXRo


https://www.communityexchange.net.au

http://www.wavertonhub.com.au/

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www.mychoicematters.org.au http://www.cdah.org.au/


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Alzheimer’s Australia Dementia Advisory Committee, Consumer Dementia Research Network


Co-production in Practice Assessment Design and Delivery of supports

Self – assessment and collaborative process between service users, care partners and professionals

Support is designed with people and their care partners as the experts of support

Social model of support with rehabilitation for people with dementia and their care partners

Flexible – people choose the who, when, what and how support is provided

Using the skills and assets of people living with dementia and their care partners

Outcomes for people living with dementia and their care partners Australian research project – University of Wollongong – Community Care Outcomes Research

Consumer Directed Care Respite Packages Mid North Coast


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Co-production in Practice Capacity building Activism within the community

Connecting people with like minded interests and building confidence and abilities

Advocating for dementia friendly communities

Supporting people to continue activities that have meaning and value to them

Inclusion of people living with dementia and their care partners in community initiatives

Developing initiatives outside of the service system – more innovative and creative

People living with dementia and their partners leading initiatives


Co-production in Practice – Challenges

• Needs to build as well as reinforce social capital – Support structures for participation

• Challenge existing frameworks of service provision– May not fit into existing regulatory frameworks or

accountability structures• Requires organisational support and funding


Co-production in Practice – Challenges

• Challenges staff attitudes and culture• Challenges service users and their care

partners


Conclusion 1. Challenge ‘ prescribed disengagement’ model -

People living beyond dementia 2. Active participation and building connections

between people3. Co-production is one mechanism but needs

resourcing and engagement of all stakeholders4. Cultural change and attitudes by staff and

organisation 5. Be creative and engage people in the issues and

the solutions

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References and Resources Adult Social Care Outcomes Tool research project downloaded from http://www.pssru.ac.uk/ascot/index.php

Alzheimers’ Australia Dementia Language Guidelines downloaded from https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines

Alzheimer’s Australia (2013) Relate, Motivate, Appreciate - A guide to Montessori Activities, downloaded formhttps://fightdementia.org.au/sites/default/files/AlzheimersAustralia_A5_Montessori_Booklet_WEB(3).pdf

Alzheimers’ Australia (2014) The Benefits of Physical Activity for People living with Dementia ,Sydney Alzheimer's Australia NSW downloaded from https://nsw.fightdementia.org.au/nsw/news/the-benefits-of-physical-activity-and-exercise-for-people-living-with-dementia

Boyle et al, (2006) Aspects of co-production: implications for work, health and volunteering, London: New Economics Foundation

Bryden, C., (2015) Nothing about us without us ! 20 years of dementia advocacy , Jessica Kingsley Publishers Community Care Outcomes Research Project, downloaded on 17 April 2016 http://ahsri.uow.edu.au/chsd/projects/communitycare/index.html

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https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines

https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines

References and Resources Dementia Alliance International http://www.dementiaallianceinternational.orgDoidge, N. (2007). The Brain That Changes Itself. Melbourne Scribe.

Doidge , 2015, The Brains way of healing, Allen Lane , United Kingdom

Kate Swaffer’s Blog https://kateswaffer.com/

Kubler Ross, (1981) Living with death and dying, Macmillan Publishers

Kubler Ross (1998) The Wheel of Life, A memoir of living with death and dying, Le Grand (2007) The Politics of Choice and Competition The Political Quarterly, 78(2), 207-213. Ottmann, G., Laragy, C., Allen, J., & Feldman, P. (2011). Coproduction in Practice: Participatory Action Research to Develop a Model of Community Aged Care. Systemic Practice and Action Research, 24(5), 413-427. doi: 10.1007/s11213-010-9181-5 http://dx.doi.org/10.1007/s11213-011-9192-x

New Economics Foundation, ND Co-production - A Manifesto for growing the core economy, New Economcis Foundation

1 May 2023 Active Ageing Conference © Carrie Hayter Consulting 28

References and Resources Perlmutter & Loberg, (2014), Grain Brain, Little Brown and Company, America

Neville, C., et al. (2014). "Exploring the effect of aquatic exercise on behaviour and psychological well-being in people with moderate to severe dementia: a pilot study of the Watermemories Swimming Club." Australas ian Journal of Ageing 33(2): 124-127.

Needham, C. and Carr, S., (2009). Co-production: an emerging evidence base for adult social care transformation In Social Care Institute for Excellence (Ed.). United Kingdom Social Care Institute for Excellence downloaded from http://www.scie.org.uk/publications/briefings/briefing31/

Simmons, R. (2011). Leadership and Listening: The Reception of User Voice in Today's Public Services. Social Policy & Administration, 45(5), 539-568. doi: 10.1111/j.1467-9515.2011.00790.x

Swaffer, K., (2016) What the hell happened to my brain? Living beyond dementia, Jessica Kingsley Publishers, London and Philadelphia

University of Newcastle (2015) Evaluation of the NSW Volunteering Strategy – Interim Report – Phase 2 Timebanking downloaded from http://www.volunteering.nsw.gov.au/documents/23672909/23725145/Interim%20Timebanking%20Evaluation%202015_final.pdf


http://www.scie.org.uk/publications/briefings/briefing31/

http://www.volunteering.nsw.gov.au/documents/23672909/23725145/Interim%20Timebanking%20Evaluation%202015_final.pdf

http://www.volunteering.nsw.gov.au/documents/23672909/23725145/Interim%20Timebanking%20Evaluation%202015_final.pdf

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More choice, voice and control for people living with dementia 18 april 2016 final