Dangers of informality

Case notes

Situation: Louise Lawrence (not her real name) is an 86-year-old
woman who suffers from dementia. She lives with her son and his
family. To give the family a break, they independently arranged
respite care at a nearby residential care home, which is owned by a
family relative and, as such, Lawrence’s placement was at a
heavily discounted and affordable cost. Unfortunately, it did not
go to plan.

Problem: During her stay she fell out of bed in the night and
bruised her head, an arm and a hip. The family were upset that this
should have happened. At home, Lawrence sleeps with a cot-side on
her bed. The family assumed that all homes used cot-sides and did
not think to mention that one was needed. When the family raised
the issue of using cot-sides they were told it was the home’s
policy not to use them. Indeed, this policy was commended in the
home’s recent social care inspection report. The home’s
manager and owner believe that cot-sides are potentially dangerous
and do not afford residents dignity. The family believe that
falling out of bed is potentially dangerous and affords little
dignity. Given her dementia, Lawrence has not been able to express
her own preference. Using any other home is out of the question.
What possible compromises might the family seek?

Panel responses

Kathryn Evans
My role would be to provide professional support and
advice to the district nurse who may become involved in this case.
There are several issues that need to be addressed and discussed
with the family and the residential home as Lawrence is unable to
express her preference.

Primarily, a thorough assessment should be made, identifying others
that may be involved in her care, such as a community psychiatric
nurse or a day carer. It would be essential to find out why
Lawrence had cot-sides at home and the issues that led to this and
perhaps speak to the person who had assessed and fitted them. The
district nurse could negotiate with the family to re-assess the
cot-sides.

The district nurse has a duty of care to act in the best interests
of Lawrence and should conduct a comprehensive cot-sides risk
assessment. This would involve discussing with the family and the
manager the risks of entrapment, danger, dignity and restraint. The
assessment should evaluate any change and possible cause of a
change in the level of Lawrence’s dementia – for example, a change
in accommodation, urine infection, constipation, discomfort or
medication change. The assessment would also need to consider
reasons for Lawrence falling out of bed. For example, was she
trying to go to the toilet?

As a solution the district nurse should consider other ways to
prevent danger and maintain Lawrence’s dignity. These could include
adjusting the height of the bed, placing cushioning on the floor or
letting her sleep on a mattress on the floor. Whatever decision is
made the least restrictive option would need to be chosen. If there
were then no improvement another option would need to be chosen and
re-assessed regularly.

If it was decided that the cot-sides should be used, the district
nurse would need to ensure that they were properly fitted with a
bumper and maintained.

The district nurse would also need to consider referrals to other
agencies – an occupational therapist or community psychiatric
nurse, for example, who may refer to the memory loss clinic for
cognitive therapy. It would also be worth considering voluntary
organisations.

Joanna Gare
If this case were referred to the intermediate care team,
a full multi-disciplinary assessment would be carried out and any
decisions on Lawrence’s long-term care would be based on those
assessments. While it is likely that Lawrence’s long-term care
would fall within the mandate of the joint care management team, it
is unlikely that the actual care provision would be undertaken by
an intermediate care team as the patient and carers will require
more long-term specialist support.

These informal arrangements between family members for Lawrence’s
respite care may have been adequate in the short term in order to
avert carer breakdown. However, this has created new issues.

As for all placements into residential respite care a full
assessment of Lawrence’s needs should be completed before
placement. This should include a pre-visit to familiarise Lawrence
with the environment and to discuss her care needs while there.
Clearly this had not been done, otherwise the incident with the
cot-sides may have been averted.

The suitability of the home for clients with dementia is paramount,
ensuring that staff are suitably trained. Was this home registered
for care of patients with this level of dementia? Policies against
the use of cot-sides were put in place for dementia sufferers
mainly because it is considered a form of restraint and as such
contravenes human rights. However, individual risk assessment
allows an opportunity to meet individual clients’ needs to avert
such incidents.

The initial multi-disciplinary assessment would be a fact-finding
exercise to discover other professional involvement and Lawrence’s
physical and mental ability. The consequence of the move for her is
likely to cause upsets and aggravate any sleep disturbances
further. Assessment of Lawrence at night may be beneficial for a
night sitter to monitor her sleep pattern and nocturnal activity. A
full medication review and activity analysis may signpost further
interventions.

I would query why any other home was out of the question, and refer
to a joint care manager to review with the family and determine
future care needs in order to maintain and promote Lawrence’s
independence at home and the continued support of her family.

User view

What an unfortunate situation Louise and her family find
themselves in, writes Alex Bagnall. It is seldom a good idea to
involve family in financial transactions as there can be so many
implications of who owes whom. And someone is always the loser. In
this case it is Louise, who is unable to have input into the
meeting of her needs or quality of life.

Her son should have sought help and advice from their local
carers’ association or social services. They would probably
have a list of suitable places where respite care is available,
with the aids to keep Louise safe and well, including
cot-sides.

I would question the reason offered for the bruising that Louise
sustained during her stay in the home. The owners and staff seem to
lack expertise in looking after people with dementia and its allied
conditions. This involves a special way of caring, as these people
can behave aggressively. Regular kindly care can help combat
this.

Modern “best practice” is to maintain many people in their own
homes. It seems that this is the best way forward for Louise and
her family. Care and safety are the main considerations. There are
many sources of help and support.

The government accepts that carers need a lot of help to keep
everyone well, active and content. If there is a carers’
association in the area they would be able to advise where to find
this help. Primary care trusts should have information for finding
support. This help can include financial, possibly from social
services; personal care to help with hygiene; sitters, including
overnight stays; and appliances to help with lifting, laundry and
showering. Perhaps they could seek help from the Red Cross. There
is also suitable day care in some areas. The family may have to use
their own transport, but surely this would be worthwhile. However,
the family may have to be persistent.

It would help if each person in the household made a list of
their needs and desires. This should include Louise, although she
will need to be questioned by someone she trusts. If she cannot
provide answers perhaps an advocate could meet her, assess the
situation and suggest things to put on her list. Clearly this
should be done by someone who has known her for some time.

The best way forward in any situation like this case study is to
accept we all have needs and we should not be too proud to seek
help.

Alex Bagnall is an older service user.