SITUATION: James Love (not his real name) is a
59-year-old man with Down’s syndrome, who has developed
memory problems. He has always lived with his parents. The GP
suspected early dementia and referred Love to the local memory
clinic, which in turn contacted the community learning difficulty
team psychiatrist, with the aim of conducting a joint assessment
and planning relevant action.
PROBLEM: Love is aware that his memory is not
good. In addition to memory problems, he is easily distressed by
change, experiences mood fluctuations and has disturbed sleep. His
parents, and staff at a day service that Love has attended for many
years, have been finding it increasingly difficult to communicate
with him. Compared to past carer assessments of living skills and
social abilities, recent assessments show that he has some skill
deterioration. He also has an arthritic hip that can cause him
great pain and that restricts his mobility. Love is reluctant to
take part in any direct assessments of his cognitive functioning,
which could serve as a baseline for future assessments. His parents
strongly state that they wish Love to remain at home. However, he
can be quite demanding of them and does not seem to understand
that, because of ageing, they cannot do all the things they used
to. The memory clinic team is wondering whether
Love may benefit from a trial of anti-dementia medication, while
the CLDT is concerned about his future housing and care.
Panel responses from Bath and North East Somerset
learning difficulties team:
Although it is likely Love may have early dementia – incidence of
Alzheimer’s disease in people with Down’s syndrome aged 50-60 is 58
per cent – other causes of memory loss should be investigated.
Similar symptoms can also result from depression, anxiety, or an
organic cause. He is reluctant for direct assessment of his
cognitive functioning to occur. However, it is important that he
consent to any involvement of professionals who are trying to
assess his mental state. Any intervention will have to be explained
carefully so he can give informed consent.
It is useful that there are past assessments of functioning. These
can be used alongside a detailed personal history, as well as
clinical investigations, to determine a correct diagnosis. If
dementia is diagnosed, these will help identify the level of
dementia so that the appropriate advice can be given, and realistic
plans made for support. Other useful assessments that could be used
are AMPS (assessment of motor and process skills), Allen Cognitive
Level Screen, Rivermead Behavioural Memory and Bristol ADL
(activity of daily living) Scale. A carer-determined screening
questionnaire is being developed – contact the Down’s Syndrome
Association for details.
The physiotherapist should be involved, to improve Love’s mobility
and reduce the pain caused by his arthritic hip, and the speech and
language therapist will be needed to identify and advise on
improving communication. Any intervention needs to take account of
his memory difficulties, and if possible should use systems of
which he has previous knowledge.
Support for Love and his parents to enable him to remain in the
family home for as long as practical should be arranged, and their
needs reviewed regularly. Practical strategies for carers, such as
what can be expected of a person with dementia, can be found in the
Pool activity level (PAL) instrument. This identifies the stages as
planned activity, exploratory activity, sensory, and reflex; and
suggests activities that are beneficial for each stage.
The team will need to develop a plan to minimise the impact of the
number of people potentially involved, and work closely with the
primary care team to support this family. Lisa loveridge
Perhaps the community learning difficulties team is working with
Love through a screening process to provide services to people with
My intervention with Love would focus on support to him, his family
and existing services, and planning for his future. If this is what
he wants, I would support him to continue as normal, by, for
– Referring him to a speech and language therapist to work on
communication with his family and the day service.
– Reassessing his needs and examining whether additional staff were
needed at the day service or at home to implement any plan.
– Offering his parents a carer’s assessment and giving advice about
peer support services for carers and sitting services.
CLDT members could work with Love to improve his understanding of
his situation, using pictorial resources and signing. Local mental
health services for older people could advise Love’s parents and
day service, as could the Alzheimer’s Society (www.alzheimers.org.uk).
Staff working with Love or his family might wish to get in touch
with Dementia Voice (www.dementia-voice.org.uk).
I would discuss Love’s future with him and his family. It is likely
he would say he would prefer to remain at home, and also likely
that his family would feel unable to support him there should he,
for example, require 24-hour nursing care. Helping them to make
realistic choices given uncertainty about funding may be difficult
– I would try to seek agreement in principle for funding for their
preferred options at an early stage. Much would depend on local
protocols and criteria with the primary care trust. Perhaps Love’s
parents would be willing to leave him their house in trust, so that
he could continue to live there if they died first. Other options
include Homeshare (www.homeshare.org), where a
person is recruited to live in the house and provide some support.
Love’s services would need to be monitored regularly, as it is
likely that his needs would change rapidly.
Given his extensive health needs, it might be more appropriate for
a health facilitator (www.doh.gov.uk/learningdisabilities/strategy)
to care manage his services. If this person were not part of the
CLDT, effective communication would need to be established.
We all know that people are living longer than in the past,
write Kathleen Franklin, Colin Gear and Cheryl Priestley. As they
become older, the support they need to have a good life often
changes. Here are our ideas for James to still have a good
First, James is having trouble with his memory and with doing
some of the things he used to do. However, having some trouble
doing a thing doesn’t mean you can’t do it. Perhaps
James could use supports to do some of the things he used to do.
For example, if he now has trouble making a sandwich, why not make
him a picture sheet of how to do this? This would be better than
saying he can no longer make sandwiches and packing him off to a
Second, we think James should see a doctor for his hip problem,
especially as it is causing him pain.
Third, an assessment of “cognitive functioning” is something
many people with learning difficulties dislike and suspect. We are
not surprised James refused this test. While we know assessments
can sometimes be helpful, professionals must remember the history
of what assessments have meant to people with learning
difficulties. What they have, and often still do, mean is that
meaningless labels are put on us. What is “cognitive functioning”?
To us, it’s like “IQ” or “mental age” – made-up ideas that
tell you nothing about us, hurt us, and ignore our life
experiences. If we were sure an assessment for James would be
helpful, we would suggest he makes sure he trusts the person doing
it and that he takes a support person.
Fourth, James’s parents are getting older. Many of our
members can relate to this, especially if we are still living in
their home or get their support. We worry what will happen to us
after they die. Has someone talked to James and his parents about
this? James should have a rough plan for what will happen when they
die. In the meantime, James might benefit from using direct
payments and rethinking if he still wants to be at a day centre. He
might be bored and also need someone to be with him when he has
trouble sleeping. He could use direct payments to buy this
Finally, while he is making the changes so he has a good life
when he is older, James should have the chance to get an advocate,
to make sure he has his say and any support he needs.
Kathleen Franklin, Colin Gear, and Cheryl Priestley are
involved with Milton Keynes People First – part of England People
First, the organisation for and run by people with learning