Dementia is more common and can begin earlier in people with a learning disability and especially in people with Down Syndrome. In some areas there have been memory clinics, which doctors have run with nurses and sometimes with other team members too.
Dr Paul Bradley has written an article on the regular meetings he has with doctors, nurses and other's from the service to help diagnose and support people with dementia.
In Hertsmere, we had regular meetings with the doctors, a nurse and a psychologist but when the service was changing we decided we needed to change too.
In 2013, we began monthly meetings for:
- all of the learning disability psychiatrists from the 4 areas in West Hertfordshire
- nurses from each area
- a psychologist
- an occupational therapist
- a speech and language therapist.
The meetings have been running for nearly 3 years now. We talk about people we're seeing as well as services we provide, training we can offer and any problems we're having.
Last year we started meeting other colleagues to try to make the services more equal for people across Hertfordshire. Now we're meeting every 2–3 months to agree changes and check where there are any gaps. 1 we realised early on was that we didn't have an Easy Read letter about screening, so we've written that and will start using it soon.
We think it's important to try to find out if someone is having memory problems or dementia as soon as possible, so we can help people to understand what's happening and what support is available.
The nurses in each area try to keep a record of people who have Down Syndrome or who are getting older then talk to them, their families or paid carers to find out how they are getting along.
They also do a test called the Dementia in Learning Disability (DLD) questionnaire. This is mostly just asking someone who knows the person well questions about what they know and what they do. The nurses keep all the scores and then every few years (more often when people are older) they can check again and if there is a change then we will try to find out why.
If we find there's a change, or if someone is worried and asks for an appointment, we usually start with 1 of the nurses doing a more detailed assessment, which includes all areas of the person’s health.We do these assessments because lots of other conditions can seem like dementia at first, for example, if someone has a problem with their hearing or sight, or if they have an infection or depression.
The nurses will then come to the monthly meeting and we agree what to do next. If someone needs a definite diagnosis they would see a doctor, who might use another longer questionnaire called the CAMDEX-DS. At this point we usually ask for blood tests and sometimes for a brain scan (a CT scan) where the person lies down for a few minutes while a machine takes a lot of x-ray pictures of their head.
There may be support our team can offer around day to day tasks, communication or managing difficulties in understanding behaviour.
For a few people, medication can be used to slow down dementia getting worse but it can have serious side effects and isn't right for everyone.It's important to check people’s hearts before starting it and keep checking their pulse regularly when they are taking it. The community nurses often come to people’s homes to make sure everything is okay. If the medication does help, then people can stay on it for several years.
Sadly, dementia does gradually get worse and people need more support, so we also make sure the social workers know and can regularly check on what care is needed.
About the author of the article
Dr Paul Bradley is the Clinical Lead for Information Management & Technology and Consultant Psychiatrist in Learning Disabilities, West Herts Community ATS (St Albans).