The Dementia Blog

Dementia is increasing for everyone, including people with learning disabilities. But as we chatted tonight it became clear to me there are still significant challenges supporting people with learning disabilities to navigate the often complex pathway from first symptoms, through to diagnosis and symptom management. 

It’s so important to be aware of the risk of diagnostic overshadowing. That early symptoms of dementia in people with learning disabilities may be difficult to identify and misinterpreted as behaviour which challenges. This makes the need for baseline cognitive and functional skills assessment vital. 

It’s also always important to consider all potential reversible causes of any change in cognition and functional skills such as infection. 

Baseline assessment, observing behaviour and being aware of any small changes in presentation and what they may mean, adapted assessment and primary care health assessments all featured in the discussion, and were identified as key drivers in improving dementia pathways for people with learning disabilities. 

So once we’ve identified there may be a decline in cognitive function indicative of dementia, we still need formal diagnosis and then treatment and management plans. How do we involve the people we serve and is there enough accessible information about dementia to support people with learning disabilities to make informed decisions about their care and treatment? 

Is there research about efficacy of dementia medication in people with learning disabilities? If there isn’t should there be? And what other therapies can be used? 

Way back when I worked in community services we ran a 12 week course for people with learning disabilities who had dementia. It was designed and run by a speech therapist with input from a music therapist, psychologist as well as learning disability nurses. We did some memory work, themed around topics such as food, holidays, festivals, sang songs, acknowledged fears and emotions and supported some care planning. 

Team WeLDNurses would be really interested to hear what is happening for people with Learning Disabilities and dementia where you work - are there any examples out there of best practice? Any group work ideas? Adapted assessments? Do any of you have any ideas of what we could do to improve services? 

Do really think about using the comments section below to share what you’re doing or what ideas you have to improve the dementia pathway.