The legalities of managing finances and paying for future care in dementia: a UK-based qualitative study

The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce

“…Living in more rural locations is often linked to reduced suitable service availability, which can be a particular difficulty for people living with or caring for someone with a rarer subtype of dementia, such as Lewy Body, Parkinson's Disease, or semantic dementia 17 . Lacking the necessary finances to pay for care can also be a substantial barrier, despite means‐tested support, with additionally little to no guidance available on how to plan for or pay for future dementia care 18 . A recent systematic review explored the evidence base on inequalities in accessing and using community‐based social care for dementia, and synthesised evidence from 39 studies from 23 countries, highlighting five themes of situational (including economic factors), psychological (including carer beliefs), interpersonal (referring to relationships between people with dementia and carers, and support systems), structural (including lack of awareness of services), and cultural factors (including language barriers and stigma) 15 .…”

“…Inequalities in dementia care tend to be explored in individual countries and often without an intersectionality approach, thereby focusing on a single specific potential barrier to care, such as age, ethnicity, or rural/urban living location 18 . Kerpershoek et al 29 .…”

“…21,23,28 Inequalities in dementia care tend to be explored in individual countries and often without an intersectionality approach, thereby focusing on a single specific potential barrier to care, such as age, ethnicity, or rural/urban living location. 18 Kerpershoek et al 29 however provided one of the first cross-European analysis (Germany, Ireland, Italy, Netherlands, Norway, Portugal, Sweden, UK) of inequalities in accessing dementia care, by collecting data from over 450 people living with dementia and their carers. Whilst Kerpershoek et al 29 reported some variation in equity to dementia care across Europe, findings were based on a North/South comparison and failed to include other key factors often contributing to equity, such as ethnicity, socio-economic background, dementia subtype, and digital literacy.…”

“…17 Lacking the necessary finances to pay for care can also be a substantial barrier, despite means-tested support, with additionally little to no guidance available on how to plan for or pay for future dementia care. 18 A recent systematic review explored the evidence base on inequalities in accessing and using community-based social care for dementia, and synthesised evidence from 39 studies from 23 countries, highlighting five themes of situational (including economic factors), psychological (including carer beliefs), interpersonal (referring to relationships between people with dementia and carers, and support systems), structural (including lack of awareness of services), and cultural factors (including language barriers and stigma). 15 The review highlighted how people living with dementia experience multiple barriers when trying to access community-based care, and that a multi-faceted approach to providing improved access needs to be taken.…”