Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

Abstract

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

“…Knowledge about existing services is often unfortunately not always available, with carers reporting a severe lack of awareness of services and the need to be proactive to finding out about services. This is supporting recent evidence from England, exploring qualitatively specifically the barriers in accessing dementia care encountered in those living with and caring for someone with young-onset and late-onset dementia [12]. Moreover, there appears to be a general lack of understanding about dementia in carers, which can act as a barrier to seeking out help also [34], as carers may not associate certain symptoms with the dementia, but consider them to be part of the person's character, and thus fail to seek support.…”

“…The pandemic has thrown up further barriers to accessing dementia care, whilst exacerbating existing ones [12,26]. Social support services suddenly stopped operating due to social distancing restrictions and lockdown to stem the spread of the virus, leaving many people unsupported and emotionally overwhelmed, including informal carers picking up additional caring duties resulting in increased levels of burden [41].…”

“…Other evidence has indicated that being from a more affluent background increases the likelihood of getting access to anti-dementia drugs by 25% in the UK [22]. In a European study, Lethin et al [23] showed, for example, that formal support for informal dementia carers was available yet under-utilised, which to some degree supports more recent evidence into formal dementia care in a deprived region in the North West of England [12]. The recent study also showed how formal care services were under-utilised and not well accessed, but often there was no availability or funding support in particular postcodes.…”

“…Additionally, family carers are also eligible to receive adequate support, for example by accessing a carer support group or getting respite care. However, evidence indicates that post-diagnostic support in dementia is often inadequate and fragmented, both for people with dementia and for their family carers, by not offering the type of support needed for individuals or being too difficult to access [11][12][13][14]. Considering the large costs associated with dementia [2], it is not surprising that family carers provide a large amount of informal care, estimated to equate to £13.9 billion a year in the UK alone [2].…”

“…The COVID-19 pandemic has brought on new inequalities and difficulties in utilising dementia care, whilst exacerbating existing ones also [12,25,26]. Generally, the pandemic has had a tremendously negative impact on the lives of people living with dementia and informal carers, illustrated by difficulties in accessing social support services and the emotional impact of experiencing lockdown [27,28].…”