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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.