In May, Dementia Alliance International (DAI) organized a virtual café, providing a platform for individuals living with dementia and their care partners to connect and share their experiences. As part of the event, Julie Hayden, a member of DAI, shared her own advocacy journey. The discussions covered various topics, including childhood dementia, challenges in diagnosis and support, the power of advocacy, the significance of community, and the value of continuous learning.
Advocacy and research:
Julie spoke about the importance of advocacy for individuals living with dementia. She has been actively involved in research, particularly in a study highlighting the need for social care systems that consider the specific requirements of those with young-onset dementia. She has also contributed to the creation of an MSC module with Bradford University, the first of its kind in the UK, to be completely designed and written by people with a dementia diagnosis.
Challenges in Diagnosis and Support:
Members also discussed the obstacles they faced when seeking a diagnosis. Despite a family history of dementia and experiencing difficulties with balance and complex problem-solving at work, Julie struggled to receive an accurate assessment. The lack of available beds led to her admission to a psychiatric unit where brain scans finally confirmed her suspicions. Julie also highlighted the importance of support with medication management, and unique difficulties for someone living alone with dementia. It has been very fulfilling for Julie to have been able to co-host one of DAI’s Living Alone With Dementia groups for the past 5 years, the first of their kind to have been established.
Living and Learning with Dementia:
Through their experiences, the café attendees agreed that people with dementia can continue to learn and engage in new activities. Julie's personal journey has shattered misconceptions and allowed her to explore new creative outlets, such as poetry. By sharing her insights and connecting with others, Julie has found a renewed sense of purpose, helping combat the feelings of depression often associated with dementia.
Attendees shared their personal experiences, with some finding that remaining active and engaged seemed to slow the progression of their symptoms. The conversation highlighted the individualized nature of dementia journeys and the importance of continuous learning to promote well-being and personal growth.
While you're here...
This month’s Café le Brain has been replaced with DAI’s 2023 AGM, but it will resume in August. If you are living with dementia and not yet a member of DAI, you can sign up here, to join the conversation.