A review suggests there are over 100 inequalities impacting people living with dementia and their carers across multiple characteristics and parts of the health and care system. However, the current low availability and quality of data is a major barrier to accurately measuring these inequalities. With the expectation that 1 in 2 people will be affected by dementia during their lifetime, there is a pressing need for further research to inform future policy, research, and service interventions.
The review identified 110 inequalities for people affected by dementia in England, Wales, and Northern Ireland. Inequalities among people living with dementia were linked to location, deprivation, socioeconomic status, age, culture, and ethnicity. These factors influenced access to and experience of diagnosis and healthcare, A&E attendances, hospital admissions, inclusion in clinical trials, and drug prescribing. For example, diagnosis rates are between 5 and 8 percentage points lower in rural areas, with this gap increasing since 2020.
Informal carers of people living with dementia face inequalities related to gender, financial pressures, health and well-being, and structural issues in the health system. Approximately 41% of informal carers experience financial difficulties, and around 20% are out of the labor force due to caring responsibilities. These figures underscore the substantial impact of caregiving on individuals’ economic and personal lives.
Improving the quality and availability of dementia data collection and publication, as well as increasing quantitative research, is paramount to robustly establishing the presence and monitoring changes in inequalities in dementia. An estimated 982,000 people in the UK are living with dementia, a number expected to rise to 1.4 million by 2040. This high prevalence means that approximately 1 in 2 people will be affected by dementia during their lifetime. Enhancing the understanding of inequalities in dementia is essential to achieve the core purposes of Integrated Care Systems established by NHS England and the NHS Long Term Plan.
To deepen the understanding of inequalities experienced by people living with dementia and their informal carers from diagnosis to end of life across England, Wales, and Northern Ireland, the quality of current evidence on inequalities and explored ways to quantify the magnitude and variation of selected inequalities should be identified and assessed.
Case Studies on Inequality Measurement
Four case studies related to inequality measurements were observed. Each case study contains a summary of the evidence retrieved from the literature, a recommended potential way to measure the inequality over time using data in England, a discussion of data limitations, and recommendations to improve measurement with data not publicly available or currently collected.
For example,it proposed the ‘rurality gap’ (gap in diagnosis rates between the most and least rural areas) and the ‘concentration index’ (the extent to which diagnosis rates are distributed disproportionately between less or more rural areas). The rurality gap suggests that diagnosis rates are between 5 and 8 percentage points lower in rural areas. This relationship between lower diagnosis rates and more deprived areas is consistent with other studies.
Evidence shows that about 41% of informal carers of people living with dementia experience financial difficulties, and around 20% are out of the labor force due to caregiving responsibilities, with this percentage increasing to 53% in 2021-22. These findings highlight the economic burden on carers and the need for supportive policies and interventions.
This report highlights important research gaps that need to be filled to improve the understanding of inequalities in dementia. Developing robust measures for priority inequalities in dementia is essential to effectively tackle these issues. By addressing these research gaps, stakeholders can ensure that inequalities in dementia are better understood and mitigated. ‘Inequalities in Dementia: Unveiling the Evidence and Forging a Path Towards Greater Understanding,’ commissioned and funded by Alzheimer’s Society, emphasizes the necessity for continued focus and action on these disparities.
Resource: The Office of Health Economics, June 26, 2024
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