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Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction
La Fontaine Papadopoulos, Jenny H. Gage, H. Jones, B. Williams, P. O'Malley, M. Parkes, J. Carter, J.
La Fontaine Papadopoulos, Jenny H.
Gage, H.
Jones, B.
Williams, P.
O'Malley, M.
Parkes, J.
Carter, J.
Publication Date
2021-03
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© 2020 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/)
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openAccess
Accepted for publication
2020-09-16
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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.
Version
Published version
Citation
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.
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Article