Out of sight out of mind

Anyone who thinks there is no point in trying to rehabilitate
someone with dementia should visit Irene. She would tell them that
she was admitted to hospital in January 2003 and transferred to a
nursing home before returning to live in her flat in March. But she
cannot remember why she was in hospital or anything about the
nursing home.

The reality is that Irene was admitted to hospital with heart
problems. Her behaviour was “extremely difficult to manage”, and
she was quickly assessed for admission to a nursing home for people
with advanced dementia. Luckily for Irene, she was diverted to a
nursing home with a specialist intermediate care wing. Five weeks
later her mental condition had stabilised, her cognitive test score
had risen to the level indicating mild dementia, she had regained
daily living skills, and she went back home.

Clearly, people with dementia can benefit from intermediate care (a
buzzword for rehabilitation) and have just as much right to this
care as anyone else. But despite the government spending £900m
a year on intermediate care since 2000-1, it is difficult to find
services that provide intermediate care for people with
dementia.

Intermediate care is a government-sponsored programme which
promotes rehabilitation through time-limited interventions. It has
helped reduce the number of people waiting in hospital for
discharge, but so far there has been no significant reduction in
the number of older people with mental health problems, especially
dementia, waiting for discharge. Why isn’t intermediate care
reaching this group?

Some answers can be found in a report by the Nuffield Institute for
Health which lists 11 reasons why older people with mental health
needs have limited access to intermediate care.¹ They
include inadequate assessment, skills shortages, cash limits,
inadequate home support, and the timescale of six weeks specified
in the criteria for intermediate care,² which is not
appropriate for many people with mental health needs.

According to Nuffield, many assessments are conducted by staff with
little or no mental health experience. Inexperienced assessors are
likely to conclude that people with mental health needs cannot
improve within six weeks, or even be motivated enough for
rehabilitation to be likely.

Here again is the attitude deficit that assumes that people with
dementia are not suitable for rehabilitation. Whether it arises
through ignorance or prejudice, it is keeping as many as 2,000
people in acute hospital beds – and many more in non-acute beds –
who should not be there. As well as the cost implications, these
people are denied the right of choice. And because they are not
receiving appropriate care, their needs are likely to increase
rather than decrease, which will often lead to unnecessary
admission to a nursing home specialising in the management of
behavioural problems.

The bed-based service that rescued Irene is one of a small number
dedicated to rehabilitating people with dementia. Of these, the
flagship Saffron House in Bristol, with 14 dedicated beds, takes
people who would otherwise have entered specialist nursing homes on
a long-term basis. The team takes pride that none of the 46 people
discharged in the first year needed to go to a specialist nursing
home. Other intermediate care schemes work with people in their own
homes, usually by linking specialists such as community mental
health nurses to existing intermediate care teams. Both approaches
demonstrate the value of rehabilitation for people with
dementia.

There are two unique strands of intermediate care in dementia care.
“Rescue” is a word often used to point out that staff with skills
in treating physical conditions are normally not trained to respond
to the needs of a person with dementia. Common events experienced
by people with dementia in acute wards include:

• Over-medication.
• Dehydration.
• Under-nourishment.
• Inattention to dietary needs.
• Failure to enter into communication.

The consequence in many cases is that the person becomes
labelled as difficult and their mental state deteriorates, while
the physical condition for which they were admitted does not
receive treatment.

So rescue, or – to use more comfortable wording – care diversion,
is an important part of intermediate care for people with dementia.
It may need dedicated beds, with access to skills in treating the
original physical conditions alongside severe, though temporary,
episodes of disturbance.

But most intermediate care is out there in the community rather
than in bed provision. A service designed to overcome delayed
discharges is of little value unless steps are also taken to
prevent such people from being admitted. So the second unique
strand is prevention. A preventive service will still need to meet
the criteria for intermediate care, so it must be distinguished
from wider preventive services by a time limit (defined, but not
limited to six weeks) and its focus on identified goals. Once these
have been achieved, any continuing support will need to be passed
on to mainstream services.

Two initiatives are boosting the move to develop access for people
with dementia to intermediate care. The change agent team at the
Department of Health is supporting a learning and improvement
network that is spreading the word about the few initiatives which
are already proving effective.

The second initiative is the issue of a template for intermediate
care for people with dementia. This was produced by Devon social
services department, its partner agencies and Dementia Voice, with
funding from the Performance Fund. The template (see panel, left)
is in three parts which identify:

• How intermediate care for people with dementia is different
  from mainstream intermediate care.
• The framework: aims and interventions.
• Key elements: the essential features of intermediate care for
  people with dementia.

Part of the work to develop the template included consultation
exercises with people with dementia and with carers. Which brings
us back to 90-year-old Irene. If you were to visit her, you would
have to make an appointment in advance, as she may be giving violin
lessons to her friends.

Care template

How Intermediate care for people with dementia is
different

• Focuses on abilities not disabilities.
• Can include prevention.
• Often includes diversion from inappropriate care.
• Care processes can take more time.
• Assessment and gaining consent may need special skills.

Framework

• The aim: to enable people with dementia to retain or regain
  abilities, where their loss would significantly change their
  quality of life.
• Intervention stages: times of transition and when intervention
  can prevent breakdown of care.
• Time scales: a rapid response, short-term intervention.

Key Elements

• Individual and person-centred.
• Working with carers.
• Multi-disciplinary.
• Awareness and sharing.
• Consistent with existing practice.
• Maximising independence.
• Prevention and reablement.
• Continuity.
• Scope.
• Flexibility and availability.

The full template can be seen at
www.dementia-voice.org.uk/Intermediate_care2.htm

Chris Sherratt is service development officer, Dementia
Voice. 

Sue Younger-Ross is head of strategic planning and
policy, Devon social services department.  The authors can be
contacted at
csherratt@dementia-voice.org.uk 

References  

¹ Nuffield Institute for
Health, Exclusivity or Exclusion? Meeting Mental Health Needs
in Intermediate Care, 2002 

² Department of Health
circular, HSC 2001/01: LAC, 2001