Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction

Abstract

Objectives Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK. Methods Information about socio‐demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey. Results Two hundred and thirty‐three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post‐diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow‐up during 6‐weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). Conclusions Variation across diagnostic and post‐diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age‐appropriate care.

Helpful post‐diagnostic services for young onset dementia: Findings and recommendations from the Angela project

“…Of 233 survey respondents, 40 did not provide examples of helpful post‐diagnostic services, because there were none or they had only been recently diagnosed. The remaining 193 gave 856 examples between them (see Stamou, La Fontaine, Gage, et al., 2020) for socio‐demographic details). The survey coding template was finalised after analysis of 502 examples (Appendix ), as thematic saturation had been reached, confirmed via coding of the remaining examples, which did not reveal new meanings or themes (Bowen, 2008).…”

“…At macro level, our themes are consistent with valued organisational attributes in the Australian context (Westera & Fildes, 2014). Other findings of the Angela project highlight that specialist services are not only subjectively valued but also outperform other service delivery models on quality indicators (Stamou, La Fontaine, Gage, et al., 2020). Consistency of professional and team input was very highly valued by participants, who usually require support over a number of years.…”

“…It was piloted twice using cognitive interviews (Willis, 2004) with members of the Patient and Public Involvement (PPI) Group to refine wording, content, length and format. This article reports on the analysis of helpful support services, with other aspects reported elsewhere (Stamou, La Fontaine, Gage, et al., 2020; Stamou, La Fontaine, O’Malley, et al., 2020).…”

“…Diagnosis was confirmed by services for those recruited via NHS sites and by self‐reports for others. Carers could be any age and needed to self‐identify as a ‘family member/supporter’ of a person with YOD, with details gathered about the amount of care provided (see Stamou, La Fontaine, Gage, et al., 2020 for details).…”

“…Despite the distinctive needs, specifically commissioned YOD services are few, and short‐term commissioning means many are later discontinued (Cations et al., 2017; Mayrhofer et al., 2018). Most people with YOD who receive post‐diagnostic support, access this through all‐age dementia services (Stamou, La Fontaine, Gage, et al., 2020), with the exception, in the United Kingdom, for dementia caused by Down's syndrome, traumatic brain injury, HIV, Huntington's disease or alcohol‐related dementia, whose services are usually provided through other specialist services. People with YOD are not well served by most ‘all‐age’ services, which are geared towards older people with amnestic symptoms, resulting in lack of support for those with rarer dementias and provision of therapeutic activities that do not suit younger generations (Cations et al., 2017; Giebel, Eastham, et al., 2020; Mayrhofer et al., 2018; Sansoni et al., 2016; Stamou, La Fontaine, Gage, et al., 2020).…”