Matt Ash

Together with our community, we are building a service that truly helps families support their loved ones in maintaining independence while living with dementia, and potentially other conditions. To reach families when they need support the most, we want to understand where people turn for help and what events trigger their search. 

Lucy, pictured above, was one of a number of carers and people with dementia who joined us at a recent open day. We gathered to share our experiences of the early stages of the dementia journey, discussing how we first noticed symptoms and how we sought to support our loved ones through those early stages. The conversations reflected a mix of emotions; uncertainty, concern, and a strong desire to find the right support at the right time.

Noticing and Navigating the Early Stages of Dementia

In our research on this topic, we came across the Caregiver Journey Map, developed by the AgingWell Hub. It was developed in the US, but still resonated deeply with our team and seemed to capture many of the experiences shared during our discussion. The journey map describes different phases that families go through, from first noticing changes in their loved ones to making adjustments in daily life and then facing the reality of a diagnosis.

The Caregiver Journey Map highlights the range of questions that often arise when dementia first becomes a concern. In the early phases, many carers begin to wonder whether certain behaviours are simply part of normal ageing or signs of something more serious. The map also reflects the challenges carers face in finding reliable information and support, often feeling uncertain about where to turn. As priorities shift following a diagnosis, many grapple with how best to help their loved ones maintain independence while balancing their own responsibilities. From our discussion, these experiences are shared by many on this journey.

Personal Reflections on Key Moments

Reflecting on my own experiences with my mother, who lives with mixed dementia, I shared three moments with the group at the open day: the first time she experienced real difficulties while on holiday (as I shared in this blog), the day she received her diagnosis, and the period when we began to notice weight loss. I personally struggled to find support that was right for my circumstances. I felt like I did not have the time to invest in finding it.

Others kindly shared their experiences. Many recalled the small but significant changes that signalled something was wrong: anxiety manifesting in new ways, such as hiding valuables in safe places and then forgetting where they were hidden, or struggling to finish sentences. Some noticed weight loss, which led them to question whether their loved one was forgetting meals. These early warning signs became the moments that triggered their search for help.

Finding the Right Support

The process of finding support varied among families. Many turned to the internet, where forums such as the Alzheimer’s Society Dementia Support Forum provided a valuable space to seek advice and connect with others facing similar challenges. Others relied on more traditional sources, such as charities, local councils, and GPs, who helped set expectations for the journey ahead. However, many carers struggled to find information tailored to their own needs, often discovering that most resources focused primarily on the person with dementia rather than the emotional and practical challenges faced by carers.

As their loved one’s symptoms progressed, carers found that making gradual adjustments was key to easing anxiety and maintaining stability. Whether adapting daily routines, modifying the home environment, or introducing supportive technology, they recognised that change was best approached at the pace that it could be accepted, minimising the distress of disruption.

While every journey was unique, a common thread emerged. Support was most effective when it was accessible, relevant, and responsive to both the carer’s and their loved one’s needs.

A Shared but Unique Journey

Although every family’s experience with dementia is different, there is an undeniable sense of shared understanding among carers. During our open day, as stories were exchanged, there were many moments of recognition, nods of agreement, knowing smiles, and a sense of relief in realising that others had walked the same path. While each journey has its differences, the value of shared experiences cannot be overstated. By coming together, listening, and learning from one another, we can help ensure that no one feels lost or alone in their search for support.

If you would like to join us at our next open day, please sign up here.