New group with old issues

Services for people with learning difficulties are facing new
challenges. These lie not only in the care of severely learning
disabled clients, but also in the care of older people with a
learning difficulty who develop dementia and support for their
families, formal carers and friends.

Research shows that 80 per cent of people with Down’s syndrome will
live today into their fifties, and some into their sixties and
early seventies (compared with an average life expectancy of 12 in

Other studies suggest that people with Down’s syndrome are more
likely to develop dementia. One study found that one in 10 of those
in their forties would develop the disease, one in three of those
in their fifties and more than half of those in their
sixties.2 Rates of dementia in older people with
learning difficulties are estimated to be four times higher than
one would expect from an age-matched population.

For services this means the emergence of a new – and growing –
client group: older people with a learning difficulty and

At present, a significant number of these clients live with family
carers. McGrother and colleagues found that nearly half of all
adults with learning difficulties lived in the family home with
carers aged 60 or over.3 My own research supported this
and found that three-quarters of older carers had health problems
themselves, the most common being a heart condition. Most
worryingly, nearly two-thirds had made no emergency arrangements in
the event of illness.

More work needs to be done within learning disability programmes to
prepare for this new category of need. The Foundation for
People with Learning Disabilities’ Checklist of Commissioning
can help in developing objectives for undertaking
such work among clients with Down’s syndrome and dementia.

An example of a practical reaction to this new client group has
been developed by the Ulster Community and Hospitals Trust. A
multi-professional group within the trust has established a
database of all clients with learning difficulties to monitor
clients’ ages, assessments and care situations.

To help with early diagnosis of dementia, a tool known as the
social and cognitive skills assessment is used with every Down’s
syndrome client older than 30 – or sooner if staff have anxieties
about any change in behaviour – and with other clients older than

GPs in the trust have been sent a letter about the high incidence
of dementia in people with learning difficulties and have been sent
the checklist, Investigating Possible Dementia in People with
Learning Disabilities
, developed by the Bradford Dementia
Services multidisciplinary team. This checklist helps GPs to
eliminate other reasons for changes in behaviour and functioning,
such as thyroid imbalance, impacted ears, cataract or urinary tract
infections. A form has been devised for supported living or
residential care staff to encourage them to make speedy referrals
to GPs; and another is available for staff to send to family carers
to request a GP check-up.

A large training agenda is under way. Training is offered to
statutory members of staff and voluntary and private staff who
provide services to clients with learning difficulties. More
specialist training is offered to staff already caring for clients
with dementia.

The project group’s decision to involve informal carers in service
development planning led to research into the age and gender of the
trust’s informal carers and their existing levels of support,
whether from family or trust or private services. Through
questionnaires and interviews, the research sought to establish the
carers’ main areas of difficulty, their concerns about the future
and their ideas about service development and training.

The research suggests that most family support comes from daughters
and husbands. The main sources of statutory support were training
and resource centres and local gateway clubs. Interestingly, carers
did not want the trust to increase respite care. A strong theme
emerging from carer involvement was their plea for help in their
own home so that they could continue caring. Mobility problems,
epilepsy (often an alert for the onset of dementia) and
deteriorating sight and hearing of adults with learning
difficulties were identified as the most pressing problems for
carers who unanimously expressed worries about their ability to
care in the future. When asked what would help, typical responses

  • “Someone to make an evening meal for me and my daughter.”
  • “Hands-on help for carers in their own home in order to keep
    the family unit together.”
  • “Continuing his placement at the day centre.”

The trust is promoting an “ageing in place” culture and
recognises the contribution that day centres have to offer carers.
But to meet the needs of clients who develop dementia, day centres
have to adapt their environments and routines and transport times.
Quiet rooms are having to be found within the centres and staff are
choosing more appropriate activities to meet client needs.

A greater challenge is the establishment of financial flexibility
within the trust for care packages. Client needs must take priority
over the professional boundaries between health and social care. A
lot of work at department, board and trust senior management level
needs to happen to make this a reality. There is no reason why the
carer of a person with learning difficulties who has dementia, in
poor health and in need of support herself, cannot be provided with
services that meet their combined needs. This may involve pooled
budgets, or ring-fencing some of the dementia care budget for the
learning disability programme. A database that can provide evidence
of client ages, which can project dementia prevalence from
research, alongside a profile of carer age and family support,
should assist this. But Northern Ireland does not have the valuing
people mandate yet to hasten the gathering of such data. 

Margaret Maybin is a senior social worker for Ulster
Community and Hospitals Trust.


1 Diana Kerr, Down’s Syndrome and Dementia, a
Practitioner’s Guide, British Association of Social Workers,

2 V P Prasher, “Age of onset and duration of dementia in
people with Down’s syndrome”, International Journal of
, No 8, pg115-122, 1995

3 C W McGrother and colleagues,”Community Care for
adults with learning disabilities”, Journal of Intellectual
Disability Research
, No 40, pg183-190, 1996

Further Reading

What is Dementia, Down’s Syndrome Scotland, to help
clients understand what is happening to their friend. From

Let’s Talk about Death, Down’s Syndrome Scotland,
for staff working with people who have lost a friend through
dementia. Website as before.

Matthew Janicki and Arthur Dalton, Dementia, Ageing and
Intellectual Disabilities – a Handbook
, Brunner/Mazel,

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