The lived experience of individuals is invaluable in the work of Allied Health Professionals (AHPs), especially in dementia care. Recognising and valuing the voices of people with lived experience is key to ensuring their contributions are on equal footing with professional expertise. Embedding their experiences into practice supports a human rights-based approach and aligns with PANEL human rights principles. By being flexible, we allow everyone who wants to engage to do so in a way that works best for them. Regular engagement with those with lived experience provides a deeper understanding of emerging issues and challenges, enabling the identification and delivery of flexible, timely solutions. For instance, early consultations can highlight obstacles in accessing rehabilitation, leading to incremental changes and faster implementation of practical solutions.
This allied health profession toolkit supports AHPs in capturing everyday conversations to ensure the voices of people with dementia and their supporters inform and shape our national and local programmes. Staying aware of current issues and recurring concerns faced by people with dementia, their families, and supporters is crucial. Responding to these insights is even more important, ensuring that care is continuously improved and tailored to meet their needs effectively. Through this approach, we not only enhance the quality of care but also empower individuals with dementia by respecting and integrating their lived experiences into our practice.
Principle of Active Engagement
Active engagement is crucial for understanding what is important to the people and communities we work with. This resource provides tools to help build on existing knowledge, developing a national approach with local delivery to achieve meaningful changes. Often, the most powerful voices calling for change are those of people living with dementia and their supporters. The resource aims to support AHPs by providing opportunities for individuals with dementia and their supporters to share what is important to them, creating a collective voice in partnership with AHPs.
The resource encourages ongoing communication with people living with dementia and their supporters, discussing how support can be more effective, and keeping them informed of progress. It also focuses on addressing local issues related to accessing support and information about dementia. By facilitating meetings and discussions, AHPs can identify and prioritise local needs. Capturing recurring issues and emerging themes through everyday conversations ensures that AHP services are well-informed and can deliver a personalised approach. This toolkit supports capturing these conversations to improve our collective and personalised approach to services.
Approaches to Consider
To effectively capture the voices of people living with dementia and their supporters, several approaches can be adopted. These include setting up ‘listen and learn’ events, attending local group sessions, and gathering feedback during regular interactions such as clinic visits or home visits. Additionally, offering opportunities to share feedback through posters and postcards in community focal points like libraries, Alzheimer Scotland Brain Health and Dementia Centres, Meeting Centres, and Carers Hubs can be highly effective. It is crucial to empower people to know that their voices are important, valuable, and will be heard and responded to.
Principle of Going to the Communities and Where People Meet
Engaging with people in their own environments is essential for effective collaboration. This approach emphasises accessibility, making services and initiatives more available to those who might not otherwise engage. It helps build trust and rapport, ensuring interventions are tailored and relevant to the specific needs and contexts of different communities. Inclusivity is key, as this approach ensures that voices often marginalised or overlooked in traditional settings are included. Ultimately, this method empowers communities by involving them directly in the decision-making processes that affect their lives, fostering a sense of ownership and active participation.
Everyone’s Voice is Important – Making it Work for Everyone
To effectively engage people living with dementia, it is crucial to utilise insights from those with lived experience. The Scottish Dementia Working Group provides comprehensive guidelines for making meetings more accessible. Key recommendations include scheduling meetings between mid-morning and mid-afternoon to accommodate energy levels, keeping presentations short and using clear, simple slides, and providing written instructions with ample response time during workshops. These practices help ensure that individuals with dementia can participate meaningfully and comfortably in meetings.
The DEEP Network’s guide offers practical tips for collecting feedback from people with dementia, emphasising the importance of simple language, patience, and encouragement. Emotional touchpoints are another powerful tool for understanding people’s experiences and emotions. This method involves participants selecting emotion cards that best describe their feelings about an experience, and facilitators using active listening to encourage participants to share their stories. These approaches help challenge assumptions, provide deeper insights, and ensure that the voices of those living with dementia are heard and valued in decision-making processes.
The Toolkit Provides Some Ideas to Get You Started
Listen and Learn Event: To promote a Listen and Learn event, reach out to all contacts and local dementia support groups to identify potential participants. Making the session more welcoming by bringing treats and sending your outline and questions ahead of time can be helpful. Alternatively, you can ask to attend a regular meeting of an existing group to integrate with their schedules and increase participation. The event should last approximately 1.5 hours, starting with introductions and the purpose of the meeting, followed by a themed discussion and a comfort break. Conclude by summarising key points, explaining next steps, thanking participants and explaining how their input will help improve services.
Keeping Participants Updated: It is essential to keep participants informed about the progress following your discussions. Send an initial thank-you email or letter within seven working days, reiterating key issues discussed. To share outcomes, adopt a “You said / We did” approach, creating posters that highlight how feedback has been acted upon. This method builds transparency and trust, demonstrating that their voices are valued and have led to changes. It also encourages broader participation, as sharing results invites more people to provide their thoughts. Including QR codes on these posters makes it easy for participants to give further feedback and stay updated on actions taken based on their input.
Conversation Toolkit Resources
Postcards: Utilise postcards designed for capturing feedback during or after treatment sessions. These can help gather quotes or details about issues individuals have spoken about, ensuring that their stories can be shared either anonymously or with contact details for follow-up.
Reflective Sheet: An A4 printable sheet can be used to capture detailed feedback about experiences with specific types of AHPs. Questions should focus on what was done right, what could be improved, and any additional comments.
Questions for Postcards and Listen and Learn Events: Consider asking questions such as:
- ‘What have we got right for you?’
- ‘What could we have done differently?’
- ‘What went well?’
- ‘What would make things even better?’
- ‘What makes your day better or easier?’
- ‘What helps you have a good day?’
- ‘What are the barriers to this happening?’
- ‘What would you like to tell us?’
- ‘What would you like to see happen?’
- ‘Is there anything that would make it easier for you to use our service?’
Postcard for Before and After Treatment:
- ‘What can I help you with today?’
- ‘Have we achieved your goal today?’
Poster: A poster titled “Let’s talk about dementia and Allied Health Professionals” can help gather stories and opinions from individuals with dementia and their supporters. It should invite people to share their experiences and suggestions for improving access to AHP services. Including a QR code can facilitate easy feedback submission.
We hope you will find the allied health professional toolkit useful, enabling you to capture what’s important to people with lived experience of dementia. We’d really appreciate your feedback and experience of using the toolkit.
Contributor: Fran Hamilton, Occupational Therapist. @FranHamilton_OT
