Evaluating a young-onset dementia service from two sides of the coin: staff and service user perspectives

Abstract

Background: People with young-onset dementia (YOD) can often struggle getting the right treatment. This is because of their frequently different characteristics and needs compared to people with late-onset dementia. The aim of this project was to assess a memory service for its adaptation to the needs and wishes of people with YOD and their carers. Methods: This project evaluated a memory service in the North West of England by performing two focus groups with clinical staff and six semi-structured interviews with people with YOD and carers. The focus groups took place on site and lasted one hour each. People with YOD and their carers were identified via the memory clinics caseload and via the local Alzheimer's Society charity organisation. Both focus groups and interviews were audio-recorded and transcribed, and data were analysed using thematic analysis. The public (a person living with YOD and his carer) were involved from the design stages of the project through to the analysis and dissemination. Results: Eleven members of staff with different clinical backgrounds participated in the focus groups and six interviews were held with people with YOD and their carers. Both indicated that whilst the diagnostic process is relatively well conducted at the service, the post-diagnostic service has many gaps. These include limited postdiagnostic support by the service, better enabling peer support, as well as providing meaningful activities, as some activities provided might be more suitable to older adults with dementia. Conclusions: Post-diagnostic services and support for people with YOD and their carers need to be improved. The next step will be to implement the findings from this service evaluation in practice and improve service satisfaction and relevance to people with YOD.

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

“…With interviews conducted between January and March 2020, the early effects of the COVID-19 pandemic on accessing services already became apparent in some interviews conducted towards the end of the study. Carers were starting to become concerned about the lack of continued support provision, which has been subsequently evidenced in U.K.-wide research on the detrimental impact of COVID-19 public health measures on social support provision in dementia [ 16 ]. Although critical work is emerging on the impacts on care homes during the pandemic [ 27 , 28 ], research must not neglect the large proportion of PLWD living in the community who have also been impacted by COVID-19 indirectly within their own home.…”

“…It remains unclear whether the pandemic has affected access to services equally amongst people with dementia and carers, or whether certain inequalities have been exacerbated. However, inequalities may be introduced; it is emerging that most services are now provided remotely and via digital platforms [ 16 ]. Unequal access to or use of either a computer or appropriate smartphone, whether due to financial barriers or a lack of technical expertise, complicates healthcare provision where this has moved to digital platforms.…”

“…Due to the age difference, people in their 70s or 80s are mostly retired and less likely to have large financial commitments. A recent memory clinic evaluation corroborated these different needs, whilst also showing that the diagnostic process itself was more positive than the lack of support afterwards [ 16 ]. Care for people with YOD needs to be addressed differently to care provided for people with LOD.…”

Ethnic disparities in the uptake of anti-dementia medication in young and late-onset dementia

“…Post-diagnostic support is particularly poor for people with young-onset dementia (YOD) (Cations et al, 2017;Innes et al, 2014;Nielsen et al, 2019). People with YOD and their family carers often experience a lack of information and tailored support, considering the different needs of people with YOD compared to those with late-onset dementia (LOD) due to their age differences and different stages of life (Giebel et al, 2020;Mayrhofer et al, 2018;Millenaar et al, 2016). Being aged under 65, people with YOD are usually in employment and can struggle having to leave work, also potentially leading to financial difficulties (Dourado et al, 2018).…”

Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset

“…These differences are not only explained by the younger age of persons with YOD with the subsequent social and socio-economic implications. YOD and LOD also differ with regard to dementia etiology, symptoms, therapy, caregiver burden, and many more [9][10][11][12][13][14][15]. However, less attention has been paid to potential differences between YOD and LOD in advanced disease stages.…”