NEWS

“We need to ensure that all people with learning disabilities who are at risk of developing dementia or have had a diagnosis have access to excellence”

This summer we are welcoming some inspiring keynote speakers to our Ageing Well with Dementia and Learning Disabilities conference.

From the 22-24 June the sector will be gathering online for what’s set to be an illuminating and engaging event with leaders in the field delivering a fantastic range of keynotes and specialist workshops.

We caught up with Clinical Psychologist, Dr Karen Dodd (Surrey and Borders NHS Foundation Trust), to learn more about the key challenges and developments around people ageing with a learning disability and dementia, measuring quality outcomes, and why we need to sit up and take more notice of these important issues.

In your professional work, what are you most passionate about and why?

I have worked with people with learning disabilities for 36 years. I am passionate about improving the quality of life for people with learning disabilities, ensuring that staff and professionals are skilled to meet needs across the age span.

All my work has been about understanding what people with learning disabilities are experiencing, and then thinking creatively to develop new ways of working, resources, and measures to support this.

I am passionate about improving the quality of life for people with learning disabilities, ensuring that staff and professionals are skilled to meet needs across the age span.

What do you think are the most important developments and challenges that we should be aware of around people ageing with an intellectual disability and dementia?

 I think the most important challenges are around ensuring that people get the consistency and excellence in care and support that they need as the dementia progresses.  We need to ensure commissioners and service providers understand that dementia is a progressive disease and that support needs to adapt and increase as the person’s needs change.

the most important challenges are around ensuring that people get the consistency and excellence in care and support that they need as the dementia progresses.

This means that additional funding is often required to support both the identified person, and to ensure that other people in the service are also supported appropriately.

In terms of development, I think the most interesting developments are within the science – understanding the mechanisms of dementia.

Tell us a bit about your work to measure quality outcomes for people with dementia.

I first got interested in dementia and people with Down’s syndrome in 1990, when I changed jobs, and the very first lady I was asked to see had changed and nobody knew why.  This led me on a journey of investigation and discovery – firstly understanding dementia and how to assess the person; then developing models of care, training and a range of resources for staff, families and people with learning disabilities.

About 10 years ago, myself and a colleague from Sheffield started to think about how we could measure the outcomes for people with learning disabilities and dementia.  I had tried to use outcome measures used in the older adult population, but these didn’t work for the people I worked with.  We wanted to develop an outcome measure that could look at the quality outcome for the person as the dementia progresses, and also support families and staff to identify what needs to be in place to assure quality.

We developed the QOMID – Quality Outcome for Individuals with Dementia – which has 17 domains and looks at outcomes for early, mid and late stage dementia.  The measure is now being used in many services across the UK. The Quality Outcome Measure can be accessed here>

We wanted to develop an outcome measure that could look at the quality outcome for the person as the dementia progresses, and also support families and staff to identify what needs to be in place to assure quality.

Why is this topic – Ageing with an intellectual disability and dementia – so important and timely to explore now?

This topic is important because as the life expectancy of people increases, the number of people who are likely to develop dementia also increases.  We need to ensure that all people with learning disabilities who are at risk of developing dementia or have had a diagnosis have access to excellence in assessment, diagnosis, interventions, support and outcomes.

We need to ensure that all people with learning disabilities who are at risk of developing dementia or have had a diagnosis have access to excellence in assessment, diagnosis, interventions, support and outcomes.

What are you most looking forward to about the Ageing Well conference this summer?

I’m looking forward to hearing the stories from people with lived experience – it’s so important, especially hearing how people have been supported if a friend with learning disabilities has developed dementia.

I’m also looking forward to hearing the other keynote speakers, which will bring us all up to speed on current best practice.

Dr Karen Dodd will be presenting her keynote about the importance of measuring the outcomes for people with learning disabilities who develop dementia at our Ageing Well conference this summer.

Find out more about our inspiring programme of speakers and workshops here>