Side by Side project helps people with dementia live longer at home in Worcestershire

The Risk Factor: a social care professional explains a difficult case with a satisfactory outcome. This case study involves an elderly woman with dementia. The independent comment is by Mark Sloman

CASE NOTES

Practitioner: David Palfreyman is a social worker for Worcestershire Council.

Field: Older adult mental health.

Location: Worcestershire.

Client: Sheila*, an 87-year-old woman with dementia whose husband, her sole carer, has recently died.

Case History: Sheila has become unable to look after herself. She was experiencing delusions and was often disoriented and confused.

Dilemma: Sheila’s dementia and forgetfulness increases the risk that she could come to harm. Despite this, she is keen to retain her independence and wishes to remain in her own home.

Risk factor: Allowing Sheila to remain in her own home is in keeping with her wishes, but there is a risk that she will not be able to care for herself adequately.

Outcome: As part of a new scheme, Sheila receives intensive daily support from highly trained care staff. The support allows her to live as independently as possible in her own home.

The story

Dementia often leads to a loss of independence for the individual with the condition. But this may not come to the attention of support services if the individual is looked after by a full-time carer, writes Mark Drinkwater.

David Palfreyman is all too aware of the importance a family can play in supporting a person with dementia. As a social worker in Worcestershire Council’s adult older mental health service, he has received many referrals because difficulties have arisen when the main carer can no longer provide care for a loved one.

Palfreyman describes one of his cases, Sheila*, a woman with dementia who had problems coping independently. “She had delusionary beliefs,” he says. “Her dementia meant that, even though her husband had died, she believed he was still alive and living there. She thought she could still see him. These delusions did provide some comfort for her, but showed the extent of her condition.”

Sheila was not eating properly and it became clear that she would be unable to cope on her own and was at risk of harm through neglect. Her circumstances gave cause for concern and she was assessed under the Mental Health Act 1983. However, an assessment by one of Palfreyman’s colleagues showed that she did not meet the threshold for detention.

A placement in a residential care home was explored, but this option was also against Sheila’s wishes. So Palfreyman considered further options with Sheila and her nephew, who was still in regular contact with her.

Project trials

In the past, this case would have presented Palfreyman with a problem. Finding the appropriate resources in a community setting for someone like Sheila would have been difficult. “A traditional service probably would have failed if in the first few weeks she was refusing access, refusing help with personal care, not accepting medication or food,” he says. “In such circumstances, it makes continuing with care at home increasingly difficult, as the risks of self-neglect could become too high.”

Fortunately, Worcestershire Council was trialling the Side by Side project in Sheila’s locality. This initiative provided specialist home care services with highly trained staff working more flexibly and intensively with people with dementia. Palfreyman and his colleagues used this new service and co-ordinated a package of support that met Sheila’s needs and allowed her to continue to live in her own home.

But accepting home care can be a big step for service users. Even when they are experiencing significant difficulties coping, some resist the offer of care. Palfreyman says staff could pre-empt any resistance to support.

“Our care staff were very skilled and did an excellent job in terms of gradually developing an appropriate relationship with the service user and incrementally building up the support which she was able to accept,” he says. “The continuity of seeing the same carers who could be more flexible with time and tasks helped to foster a rapport.”

Reflecting on the case, Palfreyman is certain that the right decisions were made in the best interests of Sheila. The carers’ knowledge and understanding of dementia enabled them to establish a relationship and make progress with her.

The Side by Side pilot project has proved so successful in prolonging the independence of people like Sheila that it has now been extended across the county.

*Name has been changed

Arguments for taking the risk

● Independent living

Sheila was clear that she wished to continue living in her own home.

● Detention criteria not met

She did not meet the threshold for detention under the Mental Health Act and did not want to live in a residential care home.

● Intensive support available

A daily package of intensive support from highly trained home care staff was available. There was also a multidisciplinary team on hand if there was any deterioration in her condition.

● Family’s views heeded

In keeping with the service’s person-centred approach, a plan to keep Sheila in her own home was the preferred option for her and her family.

Arguments against taking the risk

● A safe environment?

Sheila’s delusions and her dementia were giving cause for concern. There was a risk that she would not be able to maintain a safe environment at home.

● Uncertainty over decision

It was uncertain whether Sheila’s wishes to remain in her own home were an informed choice or in her best interests.

● Chance of harm between daily visits

While there was support, she may have come to harm in between the daily visits from home care staff. There was also a risk that she might not engage with the service.

Independent Comment

Practitioner: Mark Sloman, social worker with a community mental health team in Somerset

David has clearly worked hard for his client Shelia. But I am sure that David would be the first to also give credit to the commissioning teams who set up Side by Side, a specialist home care service for people with dementia.

It is often the case that older people with a diagnosis of dementia are detained under mental health legislation and admitted into hospitals or residential nursing homes because of a lack of community-based resources. This specialist service should be seen as a positive intervention and it is incumbent on approved mental health professionals to consider all community-based resources available to clients. Detention should be the last resort.

The strength of Side by Side appears to be the specialist training and skills of the carers. It does require a different set of skills and demands a degree of flexibility, creativity and sensitivity.

Good personal care has at its core an interpersonal relationship which needs to be nurtured. For carers to work intensively with clients like Shelia, having time to develop a personal working relationship is crucial.