Using evidence to create a fairer future for people affected by dementia

Nine years ago, I started my career at Alzheimer’s Society. I provided information and support to people with a diagnosis of dementia, and their families in Anglesey, North Wales.

It wasn’t until I moved into another role in Alzheimer’s Society, facilitating activities for people living with dementia and their carers to share their experiences of dementia, did I realise the sheer variation in them.

Curious, I decided to take one common theme (rurality) and investigate a bit further. I produced a report called ‘Dementia in Rural Wales: The Lived Experiences'. I learnt that fewer services and points of information were available for people living with dementia in rural areas, and often they were not dementia specific. People told me they were unable to access the appropriate care and support they desperately needed.

This was the start of my interest in understanding more about the unfair and avoidable differences that people affected by dementia can face in the access to and the experience of care. These differences are often outside of their direct control and can influence how people affected by dementia think and feel. It can also affect their physical health, mental health and wellbeing. The most common term used for describing these differences is inequalities.

Nearly a decade on, there are now real requirements in statute and guidance for systems to act on inequalities, and we have more knowledge on inequalities in the context of dementia. Despite this progress, I continue to hear about the inequity people affected by dementia experience from diagnosis through to end of life. With the expectation that by 2040, there will be 1.4 million people living with dementia in the UK, there is a pressing need to tackle inequalities in dementia through policy, research, and service interventions to ensure a fairer future for all.

But where should we start? I believe it should always start with evidence.

What does it tell us about inequalities in dementia?

Where are the gaps in our knowledge?

Only then can we start to respond fully and ensure any response is impactful.

What does existing evidence tell us about inequalities in dementia?

To help us make sense of the current evidence base, Alzheimer’s Society commissioned the Office of Health Economics (OHE) to help deepen our understanding of inequalities in dementia.

We asked OHE to conduct a literature review to find out what existing academic and grey literature does and doesn’t tell us about inequalities and dementia. We were interested in inequalities from diagnosis to end of life relevant to three nations we work in - England, Wales and Northern Ireland. We also wanted to choose some inequalities and see if we could measure them using publicly available data.

You can read the full report and findings here.

The literature review found a staggering 110 inequalities impacting on people living with dementia and their carers across multiple characteristics, circumstances, and in various parts of the health and care system.

What was of most interest to me, was the knowledge gained from inequalities identified in the literature review that compared people living with dementia to people with other diseases. The experiences of people living with dementia were not only due to the nature of having a disease, but also because of dementia specifically. For example, there are no waiting time targets for dementia diagnosis and no global staging scale in dementia, as there is in cancer. This leads to less targeted and standardised support and health care.

Inequalities also exist between different groups of people living with dementia and carers and we learnt more about their widely varying experiences of health, social care and related services. To highlight this point, younger people with dementia can face more challenges in accessing a diagnosis and post diagnostic support and care. This suggests that services may not be fully inclusive of the varying needs of people affected by dementia.

Where are the gaps in our knowledge?

We can’t accurately measure inequalities in dementia using publicly available data. Whilst OHE were able to indicate that diagnosis rates in England were lower in more rural areas, they could not robustly measure access to diagnosis for deprivation and ethnicity. Why? Because there is a huge data gap.

One of the starkest findings was the high degree of underreporting of ethnicity in the recorded diagnosis of dementia in England. This is despite the existing evidence base suggesting that ethnicity is a factor that contributes to inequity in access to and experience of a dementia diagnosis. The largest recorded category of ethnicity was ‘undefined’ which differs to the category ‘unstated’ which refers to people who are asked about their ethnicity but choose not to disclose it. For the full extent of ethnicity-related inequalities in dementia to be measured, so that it can be assessed and addressed, we need more complete data.

More so, data was not available in Wales and Northern Ireland to calculate access to and experience of diagnosis related to rurality, deprivation, and ethnicity. This means there is disparity across these three nations in the data being collected, published and used. Dementia data is one type of evidence that can contribute to our understanding of the scale and impact of inequalities in dementia and inform the solutions we may use to reduce them. Ultimately, if we can’t measure it, we can’t tackle it and this disparity needs to be addressed.

Using evidence to create a fairer future for people affected by dementia

Evidence can be used for good. I have a few thoughts on how we could use evidence to reduce inequalities experienced by people affected by dementia now, and in the future.

• We need to acknowledge limitations in the current evidence base, and address evidence gaps. A priority should be to improve the quality and quantity of dementia data to help deepen our understanding of the scale and impact of inequalities across the UK. This will help us build a more robust case for policy-and decision-makers to make meaningful changes to reduce them.
• Future research needs to be more inclusive and representative of the dementia population so that when they are translated into policy or practice they are more reflective of the varying needs of people affected by dementia and therefore reduce, not worsen, inequalities.
• Some good quality evidence exists now, and as we address limitations or gaps in the evidence base, more evidence will emerge in the future. We need to better bridge the gap between evidence, policy and practice to ensure that our efforts to reduce inequalities for people affected by dementia are impactful. The whole dementia system will need to work together to ensure that the impact of inequalities on people affected by dementia is understood, to amplify the voice of those with dementia who experience inequity and to develop interventions that will create a fairer future for all.

What’s next?

We are launching the Dementia Healthcare Inequalities Initiative. This research funding initiative will catalyse the development of a transformational intervention to reduce inequalities in diagnosis and post diagnostic care. It will help to generate the vital evidence needed to show that these interventions can be scaled up and used successfully in the UK healthcare system. You can read more about the Dementia Healthcare Inequalities Initiative here.