Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction
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Publication date
2021-03Author
Stamou, VasileiosLa Fontaine Papadopoulos, Jenny H.
Gage, H.
Jones, B.
Williams, P.
O'Malley, M.
Parkes, J.
Carter, J.
Oyebode, Jan
Keyword
(3-10)Alzheimer's disease
Care pathways
Caregivers
Early onset dementia
Frontotemporal dementia
Rare dementias
Service costs
Services
Rights
© 2020 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/)Peer-Reviewed
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openAccess
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Show full item recordAbstract
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.Version
Published versionCitation
Stamou V, La Fontaine J, Gage H et al (2021) Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction. International Journal of Geriatric Psychiatry. 36(3): 411-422.Link to Version of Record
https://doi.org/10.1002/gps.5437Type
Articleae974a485f413a2113503eed53cd6c53
https://doi.org/10.1002/gps.5437