Improving Engagement and Tackling Stigma in Dementia Care

In the final session of the second Dementia Commission inquiry, panellists gave evidence on ways to improve engagement and tackle stigma in dementia care.

In the ongoing pursuit of comprehensive and compassionate dementia care, the recent inquiry session of the Dementia Commission brought together prominent figures in the field to discuss strategies for improving engagement and tackling the stigma surrounding this complex condition.

The discussion, led by experts and advocates, highlighted crucial aspects of dementia care that demand attention, ranging from patient engagement to addressing ethnic inequalities. The session featured insightful contributions from Chief Admiral Nurse and CEO of Dementia UK Dr Hilda Hayo, Associate Director of Evidence and Involvement at the Alzheimer’s Society, Executive Director at the Dementia Alliance for Culture & Ethnicity, Colin Capper, David Truswell, and Assistant Director, Policy and Strategy at the NHS Race and Health Observatory Sam Rodger, each offering their unique perspectives on how to shape a more inclusive and effective approach to dementia care.

Patient-Centred Approach and Caregiver Support for Dementia

Dr Hayo kicked off the session by underscoring the importance of patient engagement, caregiver support, and partnership working. She emphasised the need for broader engagement, extending to diverse age groups, cultures, and locations. Dr Hayo stressed the significance of person-centred care, acknowledging individual strengths and areas requiring assistance. She drew attention to the pressing need for post-diagnostic support, as caregivers often feel abandoned and struggle to access specialised advice. She further advocated for workplace education to recognise early symptoms and address the stigma surrounding dementia.

“Engagement is the cornerstone of effective dementia care. To truly understand the needs of individuals and their caregivers, we must expand our scope to include diverse voices, cultures, and experiences. Person-centeredness starts with acknowledging the strengths within each individual and tailoring support accordingly.”

Dr Hilda Hayo

Active Involvement and Clear Communication

Capper focused on language and clarity in communication. He urged for a clearer understanding of terms like participation, involvement, coproduction, and co-creation, encouraging active and meaningful involvement of people with dementia in decision-making processes. Capper addressed the “inverse involvement challenge,” where those most in need of support are often the least involved, emphasising the importance of inclusivity.

“Language matters in dementia care. When we talk about involvement, we’re not just referring to participation; we’re talking about active engagement that shapes policies and services. Bridging the gap between those most affected by dementia and decision-makers is crucial for inclusive and impactful change.”

Colin Capper

Diversity and Cultural Sensitivity

Truswell highlighted the unique challenges faced by minority communities. He shattered the myth that these communities naturally take care of their own, stressing the need for tailored support and resources. Truswell discussed the higher risks, isolation, and lack of awareness within these communities, urging for personalised care and inclusion.

“The misconception that minority communities naturally provide care for their own is a barrier to progress. It’s time to debunk this myth and address the disparities that exist. Tailored support and education are essential to empower caregivers and individuals within these communities.”

David Truswell

Ethnic Inequalities and Engagement

Rodger explored ethnic inequalities within dementia care. He shed light on the disparities in diagnosis and mortality rates among minority communities, emphasising the importance of trust in engagement. Rodger highlighted the increased cost of engagement due to trust deficits and unique barriers, advocating for equitable service delivery.

“Ethnic inequalities persist in dementia care, requiring targeted efforts to ensure that no one is left behind. Establishing trust, engaging meaningfully, and acknowledging the additional costs of engagement within diverse communities are vital steps towards an inclusive healthcare system.”

Sam Rodger

The session concluded with a comprehensive understanding of the challenges and opportunities in dementia care. The experts called for long-term and meaningful engagement, trust-building, addressing ethnic inequalities, and fostering collaboration across stakeholders. As we move forward, panellists hoped these insights will guide efforts to reshape dementia care, creating a more inclusive, effective, and compassionate system that serves every individual affected by this condition.

Final Thought

The discussion on improving engagement and tackling stigma in dementia care has drawn attention to the complex challenges and promising opportunities within this critical field. The insights provided by the panellists underscore the multifaceted nature of dementia care and the urgent need for comprehensive solutions that address the unique needs of individuals, families, and communities.

The consensus reached by the panellists emphasises the pivotal role of engagement in shaping policies, services, and support systems. By embracing a more inclusive approach that values the lived experiences of individuals affected by dementia, we have the potential to reshape the narrative surrounding this condition. This shift towards meaningful involvement acknowledges the power of collaboration and empowers people with dementia and their caregivers to actively contribute to their own care journeys.

The challenges of ethnic inequalities and cultural diversity in dementia care have been highlighted as pivotal areas for improvement. Acknowledging that ethnicity, culture, and identity influence the experience of dementia, the call to provide tailored support and educational resources to minority communities is paramount. Building trust within these communities and recognising the costs of engagement are essential steps towards dismantling barriers and ensuring equitable care for all.

The dialogue has also emphasised the importance of addressing stigma and raising public awareness. By fostering understanding and empathy, we can shift the societal perception of dementia, enabling earlier diagnosis, more accessible support, and improved quality of life for those living with the condition.

As we navigate the evolving landscape of dementia care, the insights shared by the panellists remind us that transformation begins with empathy, collaboration, and a commitment to listening to those who live with dementia every day. By embracing the principles of engagement, inclusivity, and partnership, we can shape a future where dementia is met with understanding, support, and hope.

In the journey towards improving engagement and tackling stigma, it is our collective responsibility to drive change that enables individuals and families affected by dementia to lead lives of dignity, respect, and empowerment.

To find out more about the Dementia Commission, email team@curiauk.com

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