People with Down’s syndrome are now living longer with a life expectancy of 50-60 or more years (compared with about 15 in the 1950s). But they are at higher risk of early onset dementia.
The first signs are changes in behaviour, unlike the general population where it is memory loss or self-awareness that goes first. For example, a normally calm person with learning disabilities gradually becomes more angry and aggressive.
Maria, 43, suffered such a change in behaviour that her mother and brother no longer felt capable or safe caring for her in the family home, where she lived semi-independently. She was also experiencing delusions: she believed that characters from TV soap operas were hiding under her bed and around the house threatening her, and she was hearing their voices through the radio.
Believing that Maria* had late onset schizophrenia or early onset dementia, she was referred for assessment to the Holly service, an eight-bed residential unit run by independent provider Mental Health Care (MHC).
“Holly had been developed to provide services locally, making them easily accessible for the client, families and other local services,” says MHC’s placement officer, Kathryn Taylor. “The service has a ‘fast track’ admission process, which we used for Maria.” It also let her remain in Wales.
Once the referral was agreed, the admission took place within 24 hours and a full multi-disciplinary team meeting was held within five working days. The team consists of a consultant psychiatrist or clinical psychologist, a member of the behavioural support team, social worker or community psychiatric nurse, a representative from the health board, the home manager from Holly and a clinical nurse specialist.
“It is quite intense work, initially setting up the team and the difficulty is sustaining work at that level,” says Colin Short, clinical nurse specialist at MHC. “But there was a prior commitment to this case from all involved – and we agreed there should be continuous communication and dialogue.”
The initial meeting was held to collate information on Maria. Taylor says: “It’s there to identify the support required and to begin to identify the care pathway and possible discharge plans.”
To assist with Maria’s case, assessment tools were used, including behavioural monitoring charts, clinical profile, service user plan, a health check and antecedent-behaviour-consequence (ABC) charts.
Short explains the charts: “They record any behavioural incidents, by writing down the antecedent (what was happening before, identifying the trigger), the behaviour itself and the consequences for Maria (what did people do, how the behaviour finished, the changes in Maria and so on.) Modifying the triggers or consequences or both can reduce the chance of the behaviour occurring again.”
One particular behaviour that came to light was that Maria would routinely check all her windows and doors. “It was as if she had to be safe, so that the TV soap characters couldn’t get into her environment,” says Short. “It became clear that Maria’s delusional episodes were more prevalent in the evening, which would tie in with the times that soaps were broadcast.”
Thus plans were put in place for alternative activities at that time. “We needed to change Maria’s focus and engage her in other things that she found enjoyable, such as going out, games and so on,” says Short.
Plans also included a medication review. “It was helpful to set up a new medication regime in a structured environment. Maria could get into the habit of taking medication and continue when home,” adds Short.
As Maria progressed, her delusional beliefs became less prominent. “We set up regular home visits and introduced work activities with the support of the community learning disabilities team,” says Taylor. “This gradual process ensured a smooth transition back to her home and family.” Maria returned home after 14 weeks at Holly.
Maria’s family were a crucial part of the process. “They know to watch out for relapses,” says Short. “They would pass that information to the local behavioural team. It was important to have a contingency plan in case of any deterioration in Maria.”
So far that hasn’t happened. Maria lives at home and has had no re-occurrence of unmanageable behaviour or delusions.
* The names of the service user and her family have been changed.
Practitioners: Kathryn Taylor, placement officer, and Colin Short, clinical nurse specialist, both with Mental Health Care (MHC), an independent provider.
Field: Learning disabilities.
Location: North Wales.
Client: Maria, 43, has Down’s syndrome, mild learning disabilities and significant hearing difficulties. She was living at home semi-independently with her mother, Sheila, 67, and brother, Simon, 41.
Case History: Over the past two years Maria had displayed challenging behaviour, including damaging property and aggression towards her mother and brother. She was also presenting with delusional beliefs – she believed that characters from TV soap operas were hiding in the house and garden and threatening her. As the family was finding it increasingly difficult to support Maria at home, she was referred to MHC, a specialist independent sector provider of mental health, forensic mental health and learning disability services. She was placed with the Holly service for assessment. At the time of the referral, it was questioned whether Maria had late onset schizophrenia or early onset dementia associated with her Down’s syndrome.
Dilemma: The worry for the family was that if Maria had late onset schizophrenia or early onset dementia then she would be unable to live at home again.
Risk factor: Maria was in danger of being placed in a long-term specialist residential service, some way from her family and out of her own country – Wales.
Outcome: Maria continues to live successfully at home.
WEIGHING UP THE RISKS
Arguments for risk
Placing Maria in Holly was a good opportunity to manage her behaviour while exploring her mental health needs.
Although short, intensive services such as that provided by Holly, can be expensive, it would have cost more to place Maria out of the area in a long-term specialist residential service.
The family was involved all the way. A behavioural support plan was developed in partnership with the local behavioural support team. This gave guidance and continuing support on Maria’s return home. Indeed, fortnightly review meetings monitored Maria’s progress and maintained consistent and effective communications with Maria, her family and local services.
The environment allowed a medication regime to be introduced.
Arguments against risk
The argument is made that an out-of-area specialist long-term residential service would have been inappropriate – but only because the nearest service was some miles away in England, isolating Maria from her family, local services and local care management. But the services offered by Holly would be broadly speaking much the same as that by a specialist residential service, only less intensive.
What would have happened had no bed been available at Holly?
Such an intensive residential support service is expensive, although this may be offset by it being short term. After being discharged from Holly, Maria is now supported by her community learning disabilities team and the local behavioural support team and is seen by a consultant psychiatrist as an outpatient.
This case shows the importance of collaborative multi-agency working and the value in working together to achieve positive outcomes for service users and their families, writes Kathryn Stone.
Maria is experiencing some difficult, frightening things. What appears to be happening here is that the team has focused on Maria’s deteriorating mental health and paid careful attention to the impact of her learning disability on that.
In our experience at Voice UK, people are considered to develop additional difficulties as a result of their learning disabilities, with little thought given to the fact that this might be mental health difficulties, as with any other member of the population. Obviously, where there are precipitating additional factors these must be addressed but a holistic approach should be taken, as has been here.
It’s good that a range of options has been used, including medication, something that is easily overlooked in supporting people with learning disabilities.
I’m sure Maria’s family would like the chance to regularly meet someone to discuss their fears about the future and how they felt about what has happened.
I wonder what steps could be taken to consider Maria’s emotional life and what support she might need to deal with how she feels now she’s back at home. A skilled therapist such as those at Respond (www.respond.org.uk) could help enormously.
Kathryn Stone is chief executive of Voice UK, a national learning disabilities charity
This article appeared in the 8 November issue under the headline “The scene was set for a TV soap episode”