Small measures

Ben, the self-destructive character portrayed by Nicolas Cage in
the 1995 film Leaving Las Vegas, had a condition known as
Korsakoff’s syndrome, named after the Russian doctor who discovered
it. For John O’Brien, the author of the original novel, this story
was biographical. He, like the Cage character, had intended to
drink himself to death (as Ben said, “drinking is not a way of
killing myself, killing myself is a way of drinking”) but in 1994,
aged 33, he committed suicide by shooting himself.

For a resource centre providing day care services and respite
support for 126 older people, the staff were used to coping with
people with varying degrees of dementia. But the case presented by
62-year-old Sandy Benson, who had Korsakoff’s syndrome, an
alcohol-related dementia, proved a unique challenge. Single and
living with his sister, Benson’s lifestyle and behaviour was
putting their relationship under intense strain. If this
accommodation broke down it could trigger a self-destructive
end.

Unit manager Marion Bell and her staff had to consider carefully
how to manage the situation. “While we were managing his risks, we
were concerned about the risks to other service users,” she says.
“His alcohol abuse could have violent effects and, because of
Korsakoff’s, his interaction with others might not always be
appropriate. But we didn’t want to discriminate against him. We
wanted to be aware of his condition but didn’t want to label
him.”

Richard Carter, then a social care worker, was the allocated key
worker. “There was a feeling that this was his last chance. It was
about building a relationship, being someone he could trust and
making him feel part of that process,” he says. “He was having a
tough time, but he was eager to try. And that was a big step
forward.”

Benson, agreeing to stay dry during his visits, attended for trial
periods, with each day being reviewed, until he was offered a more
permanent place. “We then looked at respite care,” says Bell.
“Having him here 24 hours a day presented a new challenge to us.
The advice from Benson’s GP was that he shouldn’t drink alcohol at
all as there was a real danger to his physical health.”

But Benson could not function without some alcohol. “We met him –
he was central to all this – and his social worker and GP, and it
was agreed that he could bring in two cans of beer,” says Carter.
“It was recognised that there will never be a time when he doesn’t
drink alcohol,” adds Bell.

In trying to manage his alcohol dependency, things have fluctuated.
Benson has smuggled in spirits at times. But at least he admitted
it. And staff recognise that at particular times of stress, his
beer consumption goes up. So the centre permits occasional
controlled increases. But, as Bell observes, “where in the
continuum does it become out of control?”.

Clearly the policy of involving him in decision-making has borne
fruit. “He is running the woodwork group now,” says Carter,
smiling. “Our woodwork instructor left and he has virtually taken
over. He tells me when the orders are wrong and things like that.
He has come a long way.” Bell agrees: “It was important that he had
some meaningful activity. He loves it; it’s like his work. It has
given him a purpose in his life.”

She adds: “The biggest thing for Benson has been that nobody has
done anything behind his back. We won’t contact his GP or do
anything without talking to him first. For his self-worth and
control this has been vitally important.”

“He has a lot of friends here and is well respected,” says Carter.
“He does a lot of work with new members coming in.”

Staff also understood that they had to see things outside of the
resource centre. “He worries a lot about his drinking at home and
how this makes his sister feel let down,” says Bell. “We facilitate
regular meetings between the two.”

Carter’s relationship with Benson has been crucial to the success
of their work, says Bell. And, although he has since been promoted,
he still works closely with Benson. “I see him two, three times a
week. I think that continuity is very important.”

Carter summarises the success of this work: “Being part of the
decision-making process from the beginning and making sure he has
the support has helped him incredibly. He does feel he is control
of his life.”

The names of family members mentioned in this article have been
changed.

Case notes

Practitioner: Marion Bell, unit manager and Richard Carter,
senior social care worker

Field: Older people

Location: Fife, Scotland

Client: Sandy Benson, 62 and single, had a long history of
alcohol abuse. He had been diagnosed with Korsakoff’s
syndrome – an alcohol-related form of dementia.

Case history: Benson, seriously ill, at risk on his own and
unable to sustain his own tenancy, had moved in with his sister,
Elizabeth Patten, who provided his main support. Patten lives with
her adult son but he has a poor relationship with Benson (his
uncle) and as such Benson cannot be left in his care. This has
meant that although Benson’s alcohol dependency is the main
focus to his life, he is strongly dependent on his sister also.
Both Benson and Patten believe that day care and respite support
were necessary to sustain their relationship. However, an arranged
respite break had been unsuccessful and both feared the worst.

Dilemma: If Benson was to remain in the community it was clear
that both he and his sister would need support. However, his
behaviour presented risks to those who share group care.

Risk factor: If his home situation broke down, Benson’s
ability to manage his alcohol dependency and his health would be
seriously jeopardised.

Outcome: Benson’s needs have been successfully managed: he
is blossoming in his role within the day and respite service, and
continues to live with his sister.

Independent comment

Alcohol-related brain damage (ARBD) is a spectrum of disorders
that includes Korsakoff’s syndrome. Unlike many types of
dementia, there is potential for prevention and some hope of
improvement especially for those who stop drinking. Much more
research is needed on the effectiveness of treatment and
rehabilitation regimes.

The case study illustrates in a graphic way some of the
challenges and dilemmas in providing care and support for people
with this condition.

It is unclear from the case study whether there is a
multidisciplinary assessment and treatment plan. Reassessment
should be carried out every three to six months for at least two
years because improvement may be gradual.

Many elements of intensive care management for people with
dementia are evident: a person-centred approach, recognition of
individual worth and autonomy, involvement in meaningful activity,
to name a few.

The centre is to be commended for having an alcohol policy –
this is rarely available in care settings. The big question is
about the future. Is it realistic that the centre can go on
supporting Benson for the next 10 years or longer? A man of 62 may
be more appropriately supported in a service that is geared to
younger people with dementia. Such services are thin on the ground
but the lessons learned from this case could provide an excellent
basis for innovative developments locally.

Sylvia Cox is planning consultant at the Dementia
Services Development Centre, University of Stirling.

Arguments for risk

• Without support the relationship between Benson and his sister
  would break down.
• As she was all he had, this would leave him isolated and
  vulnerable. His alcohol use would inevitably increase, the
  Korsakoff’s syndrome would escalate and death was a real
  possibility.
• The centre had clear procedure for managing the risks posed by
  Benson. As Bell says: “For us, it’s about being clear about
  evidence. We also needed to bring in as many other agencies and
  people involved as possible to make an informed decision about how
  we manage the risks.”
• There were indications that Benson was motivated to manage his
  dependency. For example, although he smuggled in alcohol he did
  face the situation and admit it.
• By ensuring that the resource centre was able to provide Benson
  with respect and meaningful activities it would provide time and
  space for him to build his self-worth, independence and
  relationships.

Arguments against risk

• Benson was referred to the centre after a failed placement.
  Even Carter admitted that he had an “extremely bad experience. It
  was a terrible time”. All other attempts to deal with his chronic
  alcoholism had similarly failed.
• It would further jeopardise his mental and physical health if
  he was again offered a service, which was then withdrawn.
  Undoubtedly, his low self-esteem would adversely affect his
  future.
• While managing the risks around Benson’s behaviour, it
  was possible that the risks presented to the other service users
  would be less well managed. Other users at the centre were
  physically and mentally very frail and might find Benson’s
  potentially erratic behaviour difficult and damaging.
• During his day care or respite support there was a danger that
  Benson might not be able to manage his alcohol use. How might
  potential incidents caused by alcohol overuse or the effects of
  Korsakoff’s syndrome be managed effectively?