Co-adapting the GRACE (Goal-diRected ACcessible, Equitable, Evidence-based Care) Dementia Post-diagnostic Support Intervention to Improve Inclusivity

Dementia is a condition that slowly changes how a person thinks, remembers, and interacts with the world. When someone receives a diagnosis, the journey does not end there; it begins a new chapter where support is needed to help them live as well as possible. Ideally, this support would be available to everyone, regardless of their background, language, or where they live. However, in reality, the help that exists often works best for a specific type of person: someone who speaks the dominant language, has a family member to advocate for them, and receives their diagnosis in a community clinic rather than a hospital. For those outside this group, the path to care is often blocked by barriers that make standard programs feel inaccessible or irrelevant.

To address this, researchers have developed a structured support program called GRACE. This program is built on the idea of setting personal goals. Instead of a doctor simply telling a patient what to do, the program helps a person with dementia and their family carer work together to decide what matters most to them, whether that is staying in their own home, managing a specific worry, or enjoying a favorite activity. The program has already been tested and shown to be effective and a good use of money in controlled trials. Yet, the creators knew that a program that works in a trial might not work as well in the messy, diverse reality of everyday life. They faced a critical question: how do you take a proven method and adjust it so it reaches the people who need it most, without losing the very things that make it work?

A team of researchers, clinicians, and people with direct experience of dementia gathered to answer this question. They did not sit in a quiet office to guess what changes were needed. Instead, they brought together a diverse group of people for a series of workshops over a year. This group included people living with dementia, family carers, home care workers, and specialists from various backgrounds, including those with learning disabilities and people from different cultural and linguistic communities. Their mission was to co-adapt the GRACE program, meaning they would redesign parts of it together, ensuring the final version was inclusive for everyone.

The process began by identifying five specific areas where the original program might fall short. The team wanted to help people who were diagnosed while in a hospital, those facing the difficult decision of moving into a care home, individuals with learning disabilities, people who speak languages other than English, and home care workers who often support people with dementia but lack specific training. Over the course of eleven workshops, the group discussed these challenges in depth. They looked at the existing materials, role-played sessions, and shared personal stories to find where the program felt rigid or exclusionary.

One of the most significant shifts they made was to ensure the voice of the person with dementia was heard directly, rather than just through a family member. In the original version, family carers often set the goals for the person with dementia. During the workshops, people with dementia expressed that they wanted to be asked what they wanted first, before anyone else spoke for them. To fix this, the team split the introductory session into two parts. The first part allows the person with dementia to meet with a helper alone to explore their own wishes. Only in the second part do they come together with their family carer to combine their goals. This small structural change preserved the core idea of working together but gave the person with dementia a stronger, more independent role.

The group also tackled the issue of language and culture. They realized that simply translating the program into other languages was not enough. When they tried translating the materials into Urdu, they found the words were technically correct but sounded too formal, like an old-fashioned version of English that no one uses in daily conversation. The team worked with native speakers to rewrite the content using simple, everyday language that felt natural to the people they were trying to reach. They also created audio recordings of the materials so that people with low literacy or those who struggle to read could listen to the content instead. This ensured that the support was accessible to people regardless of their reading ability.

Another major adaptation focused on the people who provide daily care. The original program trained external specialists to deliver support to home care workers. The team realized this was not practical for many agencies. They redesigned the training so that home care workers could teach each other, using short videos and simple guides. They also adjusted the content to be less personal and more focused on general skills, making it easier for workers to discuss sensitive topics without feeling uncomfortable. This change meant that the support could be delivered by the people who were already there, building trust and consistency.

The team also created new modules to handle specific life transitions. They developed a guide to help families navigate the emotional and practical challenges of moving from a home to a care home, acknowledging the guilt and fear that often accompany this decision. They also created a special pathway for people diagnosed in a hospital, who are often in shock and surrounded by medical equipment rather than familiar surroundings. This version of the program was paced more gently and included specific support for the confusion and isolation that can happen in a hospital setting.

Throughout this process, the researchers faced a delicate balance. They had to change enough to make the program inclusive, but not so much that it stopped working. They worried that some changes might stretch the evidence too far, particularly when considering how to support people with learning disabilities who might not have a spouse or children to act as a carer. They discussed whether the program should be flexible enough to work with paid support workers as a primary partner, even though the original trials focused on family members. While some academic members felt this pushed the boundaries of what was proven, the group agreed that the real-world need was too great to ignore. They decided to keep the core methods intact while allowing the delivery to adapt to the specific needs of the people involved.

The result of this collaborative effort is a version of GRACE that is ready to be tested in everyday care settings. The researchers have documented every change they made and why they made it, creating a clear record of how a proven intervention can be reshaped to serve a wider population. They found that by listening to the people who would actually use the program, they could identify hidden barriers and remove them. The final program includes materials in Urdu and Hindi, audio versions for those who cannot read, and new pathways for hospital patients and care home transitions.

This work demonstrates that making healthcare fairer is not just about offering the same thing to everyone. It is about understanding that different people need different things to access the same help. By bringing together the expertise of researchers with the lived experience of patients and families, the team created a support system that is more responsive to the real world. The next step is to see if these changes actually help more people get the support they need and improve their quality of life. The study suggests that when we design support with inclusivity in mind from the start, we can build a system that works for everyone, not just the few who fit the standard mold.