Carer experiences of navigating resources and services for someone with dementia.
Dementia is a debilitating condition. By 2025 there will be over 1 million people with dementia in the UK. More than 60% of people with dementia live in the community, often supported by informal carers. Increasingly, the problem of treatment burden in chronic illness is acknowledged, this includes the burden that carers experience in managing care for someone. Burden of treatment theory (BOTT) describes the relationship between patients, their social networks (particularly caregivers), and healthcare services. It outlines how changes in healthcare organisation mean that the work of managing chronic disease falls to patients and their networks.
Three focus groups with 19 people who self-identified themselves as carers of a person with dementia (PWD) were undertaken. Focus group discussions, informed by BOTT, explored: 1) issues that affect carers of a PWD in ‘navigating’ health, social and other forms of care or support; and 2) identified duties they assume. Focus groups were audio recorded, with respondent consent, and transcribed to provide data for analysis. A framework approach underpinned by BOTT was used to identify the main themes specifically relating to the roles and work carers undertake, people they engage with and the barriers and facilitators to organising and arranging care and services.
14 women and 5 men participated (age range 34 to 77years, average 60years). Carer relationships to the PWD was most often a child or spouse. Analysis identified that carers often assume a coordinator role with significant effort required to identify services and key persons needed to access care and services. Carers worked hard to build and maintain relationships with many different people and organisations from family, to health, social care, charity and commercial organisations. A lack of information and support or provision of such help at points in the dementia journey that were deemed unhelpful adversely affected carers’ capacity to care effectively and mobilize appropriate resources. This coupled with restrictions and limitations on services based on age, location and year of diagnosis led to inequalities in the services available to carers and adversely affected ability to organise services. Carers often felt unsupported and competing priorities such as family, employment and financial limitations impacted ability to maintain their caring role.
This study has highlighted the complex role of the carer as coordinator for a PWD. Fragmentation of services increases carer workload and adversely effects care provided to the PWD and the subjective wellbeing of the carers. Interventions and strategies to minimise burden on the PWD and their carers, to support or streamline coordination work could potentially improve quality of life for the PWD and their carer with potentially wider positive societal effects, for example, in delaying residential care placement or allowing carers to maintain employment.