Establishing a database for proactive screening of adults with Down's syndrome: when services work together
| Published date | 02 March 2012 |
| Pages | 99-105 |
| DOI | https://doi.org/10.1108/20441281211208464 |
| Date | 02 March 2012 |
| Author | Ben Hobson,Diane Webb,Lynda Sprague,Moni Grizzell,Cliff Hawkins,Susan M. Benbow |
| Subject Matter | Education,Health & social care |
Establishing a database for proactive
screening of adults with Down’s syndrome:
when services work together
Ben Hobson, Diane Webb, Lynda Sprague, Moni Grizzell, Cliff Hawkins and
Susan M. Benbow
Abstract
Purpose – This paper describes a service improvement project with two aims: to identify and screen all
adults with Down’ssyndrome aged over 30 years in a defined locality using a standardised instrument to
establish functional baselines; and to set up a database to facilitate early diagnosis of dementia in this
population.
Design/methodology/approach – An assistant psychologist used a standardised instrument to screen
participants who were identified through contact with health, social, and third sector, and housing
services.
Findings – Eligible people were identified and screened using an informant-based measure. Three
groups were identified: group 1 showed no significant change; group 2 showed significant change
but no signs of dementia; and group 3 showed significant change plus signs of dementia.
People with suspected dementia were referred on for further investigation/assessment and supportive
services.
Practical implications – Terminology is important in engaging families in a screening project,
as is the opportunity to provide information. A proactive screening project can be established
by employing working partnerships between intellectual disability and older adult services to aid
diagnosis.
Originality/value – Adults with Down’s syndrome aged over 30 years in a defined locality can be
identified through contact with health, social, and third sector, and housing services. Those identified
can be screened using a standardised instrument and a database of screening results established in
order to establish baselines against which future re-screening can be conducted. Partnership working
between older adult mental health services and intellectual disability services can improve the
diagnostic service to adults with Down’s syndrome.
Keywords Collaboration, Dementia, Down’s syndrome, Screening, Service improvements,
Intellectual disability, Learning disabilities
Paper type Research paper
There are estimated to be 174,000 adults aged over 60 with an intellectual disability
(also known as learning disability in UK health services) in England (Emerson and Hatton,
2004). Furthermore, at least 55 percent of people with Down’s syndrome aged between
60 and 69 years are affected by dementia (compared with a figure of 5 percent for those
aged 65 plus in the general population) (Holland et al., 1998). Studies report an increased
prevalence from age 30 that rises with age (Prasher and Krishnan, 1993; Lai and Williams,
1989), with an average age of onset of dementia in the early to mid-50s (British
Psychological Society and Royal College of Psychiatrists, 2009).
With a growing number of adults with Down’s syndrome surviving into the age of risk, health
professionals are increasingly asked to provide appropriate diagnostic services for
dementia (Turk et al., 2001). Psychological, social, and both physical and mental health
issues can delay accurate and early diagnosis, so objective and specific psychological
assessments are needed (Oliver, 1999). These assessments should form part of a proactive
baseline screening strategy (Kalsy et al., 2005). However, there is no ‘‘gold standard’’
DOI 10.1108/20441281211208464 VOL. 6 NO. 2 2012, pp. 99-105, QEmerald Group Publishing Limited, ISSN 2044-1282
j
ADVANCES IN MENTALHEALTH AND INTELLECTUAL DISABILITIES
j
PAGE 99
Ben Hobson is an Assistant
Clinical Psychologist,
Lynda Sprague is a
Community Nurse,
Diane Webb is a Strategic
Health Facilitator,
Moni Grizzell is a Senior
Research Nurse
(Older Adults) and
Cliff Hawkins is a
Consultant Clinical
Psychologist/Head of
Psychology for Adults with
Learning Disabilities,
all at Wolverhampton City
Primary Care Trust,
Wolverhampton, UK.
Susan M. Benbow is Visiting
Professor of Mental Health
and Ageing in the Faculty
of Health & Sciences,
Staffordshire University,
Stafford, UK.
The authors wish to thank Drs
S. Bhattacharyya, A. Griffiths
and G.A. Gomez for their
support and contributions
throughout this project. This
project was funded as a service
improvement project by
Wolverhampton City PCT.
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