A Framework for Engaging Carers in Co-Designing Dementia Care Interventions

Dementia care is shaped by daily routines, relationships, changing abilities, and the practical realities of living with cognitive decline. Carers often understand these realities more closely than any service plan can capture. Their experience can reveal gaps in communication, safety, respite, diagnosis, medication support, and transitions between home, hospital, and residential care.

Meaningful engagement requires more than inviting carers to comment on a completed program. Co-design brings carers, people living with dementia, clinicians, researchers, and service providers together early enough to define priorities, develop solutions, test them, and refine them. The process treats lived experience as valuable evidence while respecting clinical expertise and research standards.

A strong approach also needs to account for diversity. Carers may be spouses, adult children, friends, neighbours, or paid support workers. They may live in urban, regional, rural, or remote communities and differ in culture, language, age, income, digital access, and health literacy. These factors should shape how participation is planned and supported.

Start With Shared Purpose

The first task is to establish a clear purpose for the partnership. A project might aim to improve dementia diagnosis, reduce avoidable hospital admissions, strengthen post-discharge support, or create a more responsive respite service. A specific purpose helps participants understand where their contribution fits and prevents engagement from becoming a general discussion without a pathway to action.

Partners should agree on what co-design means in practice. This includes identifying which decisions carers can influence, which constraints are fixed, and how disagreements will be resolved. Setting these boundaries early builds trust. It also makes it possible to report honestly when a preferred idea cannot be implemented because of safety, funding, policy, or workforce limitations.

The process should recognise carers as experts by experience rather than treating them as a single representative voice. Some carers may be comfortable speaking in groups, while others may communicate more effectively through interviews, written reflections, visual mapping, or individual conversations. Offering several ways to contribute improves inclusion and reduces the risk that confident participants dominate the design.

Build A Safe And Inclusive Partnership

Psychological safety is central to dementia care co-design. Carers may discuss exhaustion, grief, family conflict, financial pressure, incontinence, behavioural changes, or experiences of stigma. Facilitators need to establish respectful ground rules, explain confidentiality, and provide breaks and support when sensitive topics arise. Sessions should avoid requiring participants to disclose more than they wish.

Accessibility must be designed into the engagement plan rather than added later. This may involve plain-language materials, interpreters, transport assistance, flexible scheduling, online and face-to-face options, quiet spaces, and support for people with hearing, vision, mobility, or cognitive needs. Reimbursement for time, travel, parking, technology, and respite care signals that participation has real value.

Partnerships with research institutes, universities, health services, and community organisations can strengthen the process. Networks such as the Brisbane Diamantina network offer a useful context for connecting lived experience with clinical research, service improvement, governance, and knowledge translation across Queensland.

Use A Deliberate Co-Design Cycle

A practical framework can follow five connected stages: understand, define, create, test, and learn. During the first stage, the team gathers stories, service data, observations, and evidence about the current experience. The second stage turns these insights into shared priorities and design requirements. The third stage generates possible interventions, such as care navigators, communication tools, carer education, home-safety supports, or coordinated discharge pathways.

Testing should happen in realistic settings and with enough time to reveal unintended consequences. A new digital tool may be difficult for carers with limited connectivity. A group education program may exclude people who cannot leave the person they support. A promising clinical pathway may create extra duplication if responsibilities between services remain unclear. Small-scale pilots allow these issues to be identified before wider implementation.

Evaluation should combine measurable outcomes with personal accounts. Useful indicators may include carer confidence, distress, service navigation, medication errors, emergency presentations, hospital readmissions, continuity of care, and quality of life for the person living with dementia. Feedback should be returned to participants in accessible language, showing which changes resulted from their input.

Match Engagement Methods To Decisions

Different decisions require different forms of participation. A survey can identify patterns across a large group, while a workshop can explore priorities and trade-offs. Observation may reveal practical barriers that participants do not think to mention, and prototype testing can show whether a proposed intervention works in daily life.

Facilitators should explain how each method connects to a decision. When participants see that their comments influence a prototype, eligibility rule, appointment process, or evaluation measure, engagement feels consequential. When feedback disappears into an unexplained process, enthusiasm can quickly decline.

Protect Ethics, Equity, And Accountability

Dementia research and service innovation must address consent, capacity, privacy, safeguarding, and potential distress. A person living with dementia may be able to make some decisions and need support with others. Consent processes should be clear, ongoing, and proportionate to the activity. Carers can assist communication and provide context, but their role should not automatically replace the voice or autonomy of the person with dementia.

Governance arrangements should specify who owns data, how recordings and quotations will be used, and how participants can withdraw. Researchers and service leaders should also monitor whether the intervention creates extra work or unequal access. An innovation that benefits digitally confident families while excluding people with limited resources may widen health disparities.

Representation needs active monitoring throughout the project. A steering group can review whose perspectives are present, who is missing, and whether recruitment is relying too heavily on one service or social network. Aboriginal and Torres Strait Islander communities, culturally and linguistically diverse families, younger carers, LGBTQIA+ carers, and people in rural areas may require tailored partnership approaches rather than a generic invitation.

Make Participation Sustainable

Co-design works best when involvement is supported before, during, and after each activity. Project teams should budget for participation from the beginning and clarify how carers will receive updates, recognition, and opportunities to review findings. The following practices can make engagement more equitable and durable:

• Pay carers or provide appropriate reimbursement for their time, travel, technology, and respite needs.
• Offer plain-language information, interpreters, accessible formats, and multiple ways to participate.
• Appoint a consistent contact person who can explain decisions and respond to concerns.
• Include carers in defining outcomes, interpreting findings, and planning implementation.
• Share results promptly, including changes that were not adopted and the reasons why.

Sustainability also depends on organisational readiness. Health services need leaders who can act on recommendations, clinicians who have time to participate, and systems that can track whether improvements reach routine practice. Research partners can support evaluation and ethics, while community organisations can help maintain trust and reach people who are less visible to formal services.

Move From Co-Design To Better Care

The final measure of engagement is whether it changes care in ways that matter. A co-designed intervention should have a clear implementation owner, realistic resources, staff training, and a feedback mechanism for ongoing adjustment. Embedding carer experience into quality improvement meetings, clinical education, funding decisions, and service reviews helps prevent participation from ending when the pilot does.

A dementia care partnership can begin with a modest, defined challenge and grow through repeated cycles of listening, testing, and learning. Health services, researchers, and community partners can invite carers into the next planning session, establish a representative advisory group, or review an existing intervention through a lived-experience lens. When carers help shape the question, the solution, and the evidence of success, dementia care becomes more responsive, practical, and connected to everyday life.