LEARNING DISABILITY PRACTICEApril 2009 | Volume 12 | Number 334
Feature
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This article has been
subject to double-blind
review.
This article is also
published in the April issue
of Nursing Older People.
n All nurses need to be prepared, in terms of their
skills and knowledge, for the growing numbers
of older people with learning disabilities.
n Nurses need to campaign for flexible services
that have sufficient resources in place to deal
with ageing-related problems.
n Generic services need to be more open in
accepting and encouraging referrals for older
people with learning disabilities.
n Specialist services and/or specialist teams need
to be developed to address the complex needs
of some older people with learning disabilities,
particularly those who develop dementia.
n Proactive strategies or plans need to be in
place in the event of a sudden death of a
parent or main carer of an older person with
learning disabilities.
Implications for practice
Carers' and parents' needs Most people with
learning disabilities have always lived in the
community and usually in later life with their
parents, generally their mother (Hubert and Hollins
2000). Walker and Walker (1998) highlight that
many of these family units receive little or no
help from services. There also appears to be little
consultation with parents and carers regarding
which service model should be adopted. When
parents are consulted, Northway et al (2006) found
that some felt disillusioned when becoming involved
in strategic planning, viewing it as `tokenistic'.
Therefore, a commitment to working in partnership
must include the client, family and carers as well as
other professionals and services. Parents often take
on the bulk of the caring role, and difficulties arise
when they become physically incapable of looking
after themselves, let alone their ageing son or
daughter with a learning disability.
The death of a parent can bring about a crisis in
the life of an older person with learning disabilities:
`Unbelievably, a few of our quite elderly clients are
still looked after by their even more elderly parents.
So, very often, we deal with quite elderly clients in
crisis because their carer [has] either died or become
physically incapable of looking after them' (focus
group 1, community learning disability nurse).
In terms of dealing with such emergencies when
they occur, or developing proactive strategies,
service providers should take into account the life
experiences of the individual with learning disabilities.
Parents may still be sharing a bed with their son or
daughter, even though the client is an older person.
Such long-term practices may be difficult to change
and may add to the many transitions and sense of
loss that the older person with learning disabilities
will need to contend with if their parent dies:
`It's very much an accommodation issue; people
generally stay with their parents and will continue
to do so. You have issues like sharing beds with
each other. Some very old-fashioned practices are
still going on out there' (focus group 3, community
learning disability nurse).
Conclusion
This study has highlighted some of the difficulties
that older people with learning disabilities may
face as they age. There are a number of different
service models in operation, although they do not
address the particular needs of this population.
There still appears to be an expectation that
people need to fit into a particular service rather
than that the service should be individually
tailored to meet the needs of clients and their
carers. Nurses have a role in ensuring that older
people with learning disabilities have access to
both generic and specialist services.
Robert Jenkins is divisional
head of learning disability
at the Faculty of Health,
Sport and Science,
University of Glamorgan
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