What is best for a couple with dementia?

CASE NOTES 

Practitioner: Suzy Croft (pictured), senior social worker at St John’s Hospice

Field: Hospice social work

Location: Central London

Clients: John*, 70, and his wife Sheila*, 71

Case history: John was referred to St John’s Hospice’s outreach services. A nurse specialist visited him and reported several concerns. John has dementia as well as physical and mobility problems. His condition has deteriorated rapidly and his wife is finding it difficult caring for him. She is unable to care for him much longer and it is evident that they both need to consider some radical changes.

Dlemma: John’s wife Sheila is also developing dementia and she is finding it increasingly difficult to care for him.

Risk factor: The case needs to be dealt with sensitively because both John and Sheila have support needs and these needs are potentially in conflict with each other.

Outcome: John decides to move to a nursing home and his wife chooses to continue to live at home with support from the hospice.

* Names have been changed

Families and partners can often be a source of support, but there are times when the individual needs of couples can be in conflict with each other, writes Mark Drinkwater.

In her role at St John’s Hospice, senior social worker Suzy Croft works closely with families. She describes the case of a couple, John* and Sheila*, with whom she worked after John was referred to the community outreach services at the hospice.

“One of our nurse specialists went to visit him and found that it was his wife who was doing all the care,” says Croft. “Our nurse specialist felt it was becoming too much for her. I think the nurse quite rightly felt concerned for this woman and she felt the family’s concern was perhaps directed more to their father than their mother.”

Croft’s concerns for the couple grew after a series of untoward incidents, including one where John fell out of his chair and Sheila was unable to get him up again on her own.

Further worries were raised by changes in John’s behaviour. “The care manager also said that the husband was sexually demanding towards her,” says Croft. “When there is some level of cognitive impairment they can develop some sexual disinhibition. For her this didn’t feel right.”

Working with the couple was complicated and it was decided that a care manager from the local authority would lead on the work with John, while Croft supported Sheila. The care manager helped John arrive at a decision on whether it was best that he remained at home, taking into consideration his mobility problems and his dementia.

“He was developing dementia and it was discussed that he might go to a nursing home,” says Croft. “The care manager involved tried to address this in a very sensitive way. He could not be made to go into a care home – it had to be on the basis that he consented and that it was what he wanted.”

Although great care was exercised to ensure that John’s decision to move to a nursing home was not based on a feeling he was a burden on his family, those involved suspected that he might have been swayed by the knowledge that his wife’s caring role was having a detrimental effect on her.

However, John’s decision to go to a nursing home was not without its complications, and Croft was disheartened to hear Sheila recount one conversation she had with her husband. “She told me privately that when she went [to the nursing home] he shouted at her and said ‘I’m only here because of you’,” Croft says. “Now she’s terrified that she’ll get sent to a nursing home because she equates it with having a level of dementia.”

Croft worked hard to reassure Sheila there was support in place for her to remain in her own home for as long as she wished to remain there. Part of Croft’s role also involves liaising with families and supporting adult children to adjust to changes in arrangements. But she acknowledges there can be challenges. In this case the children found it hard to accept that things had changed significantly for their parents.

“Her family mentioned that she wasn’t washing every morning and her clothes weren’t always clean. But she doesn’t want the carers to wash her,” Croft says. “That’s understandable because she doesn’t want that kind of intimate care. Her children want her to wash more often. But it’s sometimes hard for families to recognise which things don’t matter so much any more.”

Since she has been living on her own, Sheila’s circumstances have improved. One aspect that Croft is pleased to have made progress with relates to her finances. Croft says this development was timely: “Getting power of attorney can be a real problem. We get people asking how they get access to a relative’s bank account. But by that time it’s difficult because the relative can’t give consent and it’s too late. Two of her children now have lasting power of attorney. Fortunately, she did it when she still could consent and it was sensible to do so.”

This case was unusual because both the husband and wife needed significant support. Croft explains that, although it was initially John who was referred to them, they could switch the dementia care support to Sheila.

“Technically our patient was the husband and at some point I might have to withdraw the support to Sheila,” she says. “But we offer support to carers and we don’t stop when they most need our support. Being a social worker in a hospice I have some leeway in the work that I do.”

WEIGHING UP THE RISKS

Arguments for taking the risk

● Change inevitable

Sheila’s difficulty in caring for John, allied to her husband’s dementia, physical and mobility problems, meant radical change to his housing and support arrangements was inevitable.

● Separate social workers allocated

The allocation of a separate social worker and care manager should ensure that both spouses receive the attention of a dedicated professional to help them through a difficult period.

● Flexibility of service

The social worker can continue to see Sheila, even though she was not the client in the first instance. The flexibility of the service providers ensures that Sheila could receive the dementia care support that her husband was getting.

Arguments against taking the risk

● Decision-making issues

When both partners have dementia their needs will be in potential conflict. The professionals can never be certain that John’s decision-making was influenced by the interests of his wife.

● Progression of dementia

With her husband in a nursing home, Sheila’s situation would be more manageable. But how long can she cope as her own dementia develops?

● Loss of contact

When living separately, couples can find it hard to maintain contact with each other. This loss of contact with a loved one can have a negative impact on both partners’ quality of life.

INDEPENDENT COMMENT

Richard Pearl social worker, Swansea Council

Balancing the needs of service users and carers can be difficult, especially if each party desires a different outcome. Building good relationships can be essential when helping families move towards a solution but this takes time.

The situation described here becomes increasingly complex with considerable risks to both John and Sheila. John’s care manager sounds committed to enabling John make decisions for himself. Once John had made up his mind, helping him find an appropriate placement that can meet his needs is crucial to reduce the risks of any further move in the future.

The decision to move into a home is often a difficult one surrounded by emotions and John’s outburst to Sheila suggests the professionals’ suspicions may have been correct. This illustrates the difficulties that social workers face in balancing two people’s needs when there is no mutually desirable solution.

Sheila’s social worker has worked in a person-centred manner in recognising what is important to her and by trying to help the children understand why things have changed. Progress has clearly been made by the fact that they have now realised the need to take out power of attorney. Ongoing support for Sheila is crucial to fulfil her desire not to go into a home.

➔ Contact Mark Drinkwater to submit your Risk Factor case studies

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This article is published in the 3 November 2011 edition of Community Care under the headline “What is best for a couple with dementia?”