Voices in integrated care: insights from a qualitative study about support for people living with dementia

Background: Receiving a diagnosis of dementia is a significant and potentially life-changing event, affecting individuals and their families. Because dementia impacts on a person’s cognitive abilities it can cause difficulties with memory, understanding and making decisions. Individuals living with dementia need holistic support alongside recognition that their needs are multidimensional and cannot easily be compartmentalised into ‘social’ or ‘health’ needs.

This study’s focus is to explore from multiple stakeholder perspectives the place of dementia in newly emerging landscapes of integrated care (IC). Insights from initial analyses of data from semi-structured interviews conducted across stakeholder groups are presented.

 

Approach: Early engagement with a lived experience group highlighted points for the research to consider and helped inform the study protocol. Points raised included: the need for support for care partners and care staff to understand and navigate complex systems; what supports better quality of life for individuals living with dementia; and what could be done about ineffective communication between organisations which can lead to pitfalls and delays in care.

 

Questions explored in interviews included: what does/should IC look like; hopes /expectations for IC; what elements of integration could make a difference to people living with dementia and families; at what points is social care support needed for people living with dementia, availability of support, any challenges in access; and examples of connectedness /disconnect between health and social care. Provision was made to support inclusion of participants who lacked capacity to self-consent and/or whose first language was not English.

 

Results: As of October 2025, recruitment and data collection are ongoing. It is anticipated that the study will yield insights about –

• Support at key transitions of care: what is available, does it meet needs and, for those trying to access support, what helps and what hinders, e.g., organisational processes such as at assessment and discharge; or particular requirements for accessing services (e.g. online) which might be barriers;
• How is dementia care co-ordinated - whether formally/ informally - and which organisations/individuals are involved;
• Elements of care that may be common to ‘social’ care and ‘health’ care practice, and what might commonalities mean for integration.

 

Implications: Although a small study, this research includes lived experience perspectives from people considered the most vulnerable and who might have most to benefit from integrated care. Without the lived experience perspective, IC studies may miss important insights leading to distorted or biased results and decisions about care that don’t truly meet the needs of the people affected.

The early and meaningful involvement of family carers in integrated care planning is essential for aligning support with family needs, and to generate better outcomes.

The ’ideals’ of IC may be at odds with the realities of workforce pressures which contribute to delays in the care process. Fragmented communication and poor alignment between ‘health’ and ‘social care’ systems also contribute to delays. Findings have wider relevance for service provision to other populations with cognitive impairment including people with stroke, Parkinson’s disease and learning disability, who often have complex needs.