Co-Producing Dementia Care With Families: From Principles to Practice
Co-production is often described as “working together”, but in dementia care it must be carefully defined and delivered. Effective family, carers and partnership working balances lived experience with professional responsibility. When embedded within robust dementia service models, co-production improves outcomes, strengthens trust and creates defensible care arrangements that stand up to scrutiny.
What co-production means in dementia services
In practice, co-production means involving families meaningfully in planning, review and evaluation while retaining clear professional accountability. It is not about transferring responsibility to carers or defaulting to family preference when decisions are complex or risky.
Setting clear boundaries from the outset
Effective co-production begins with clarity:
- What decisions families influence and how.
- What decisions remain the provider’s responsibility.
- How disagreement will be managed.
- How changes will be reviewed over time.
These boundaries protect relationships when pressures increase.
Operational example 1: Co-producing a personalised daily routine
Context: A person experienced distress each morning, leading to family concern that care was “not personalised enough”.
Support approach: The service invited the family to co-produce a revised morning routine using detailed life history and preference mapping.
Day-to-day delivery detail: Staff documented preferred waking cues, order of tasks, music choices and communication phrases. A visual routine guide was created for staff consistency. The family reviewed the plan after two weeks, focusing on outcomes rather than perfection.
How effectiveness is evidenced: Reduced morning incidents; staff audit confirmed adherence to routine; family feedback reflected improved confidence in care delivery.
Using co-production to manage change
Dementia care is dynamic. Co-production should be revisited whenever needs change, ensuring families understand why adjustments are needed and how they will be tested and reviewed.
Operational example 2: Adjusting care during increased dependency
Context: As mobility declined, the family wanted to maintain independence at all costs, while staff were concerned about falls.
Support approach: The service co-produced a positive risk-taking plan, outlining acceptable risk, support strategies and review triggers.
Day-to-day delivery detail: Staff used graded assistance, clear prompts and environmental adjustments. Families were shown how risk was monitored daily and reviewed formally.
How effectiveness is evidenced: Falls data remained stable; documentation showed proportionate support; reviews demonstrated learning and adjustment.
When co-production meets limits
There are times when services must lead decisively, particularly around safeguarding, legality and staff safety. Explaining these limits clearly and early prevents conflict later.
Operational example 3: Managing disagreement during safeguarding concern
Context: A family disagreed with safeguarding actions following repeated unexplained injuries.
Support approach: The provider explained statutory duties, involved the family in understanding processes, and clarified what aspects were non-negotiable.
Day-to-day delivery detail: Staff maintained transparency, documented all actions and supported the family emotionally while progressing safeguarding requirements.
How effectiveness is evidenced: Safeguarding records showed compliance; family understanding improved; placement stability was maintained.
Commissioner expectation
Commissioners expect co-production to be meaningful, structured and outcome-focused, with evidence that it improves quality without compromising safety or accountability.
Regulator / inspector expectation (CQC)
CQC expects services to involve families appropriately while maintaining clear decision-making, lawful practice and consistent delivery.
Governance and assurance
Good governance ensures co-production is not dependent on individual relationships. Providers should evidence structured reviews, clear records of family involvement, and learning that informs service improvement.
When co-production is done well, families feel valued and confident, staff feel supported, and people with dementia receive care that reflects who they are—delivered safely, lawfully and consistently.