Neurodevelopmental Services is a specialist multi-disciplinary team which is part of Yourhealthcare CIC. We provide specialist health and psychological services to people affected by neurodevelopmental conditions, including people with learning disabilities. We have a long-standing dementia care pathway within NdS which supports people with learning disabilities and query/diagnosed dementia across the boroughs of Kingston and Richmond. Our dementia care pathway runs from the points of awareness training to end of life and all members of the multi-disciplinary team may be involved at some point in the care pathway.
- 30 December 2015
- Local Alliances:
- London Borough of Richmond upon Thames Dementia Action Alliance
1. Action Plan
1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?
The dementia care pathway we provide considers the needs of people affected by dementia at all stages of the illness, from concerns about dementia, through to diagnosis, support and end of life care. We always keep people with learning disabilities and dementia open to the service for the duration of the illness and have regular dementia care pathway review meetings (at least annually and more regularly depending on need) which involve the person and their support network, including professional/paid and family carers.
We offer training to support staff and family carers as well as ongoing consultation where needed.
We offer baseline assessments of communication, mobility, eating and drinking and functional skills which enable us to track the changes in the dementia as the person’s needs change.
We offer accessible information about dementia and also training and information to the peers, partners and friends of people affected by dementia, including friends of the client who also have learning disabilities.
We used to have a dementia service development group and we aim to restart this in 2016 to enable us to continually review and develop the services offered to people with learning disabilities and dementia.
We have audited health care professionals experiences of using and working within the dementia care pathway to enable us to ensure that all health professionals within NdS working with people with learning disabilities feel equipped to assess and support people who are also affected by dementia.
2. What are the challenges to delivering these outcomes from the perspective of your organisation?
One of the main challenges of working with people affected by learning disabilities who may develop or have already developed dementia is helping them to understand the nature of the illness and the services available to support them, as many people with learning disabilities have communication difficulties and often need significant levels of support from others to access services.
As a service, I would like us to focus on making our dementia awareness training information, post-diagnostic information/support and dementia reviews more accessible to clients – this is something we aim to focus on in our dementia service development group which we aim to have up and running in 2016.
A further challenge is the use of suitable assessment tools which genuinely capture clinical change from baseline to enable us to differentiate cognitive and functional difficulties that are related to the dementia and not just related to the impact of a person’s learning disability. There are no ‘gold-standard’ recommended assessment tools for people affected by learning disabilities when assessing dementia, therefore, we always pay close attention to the information gathered from in-depth clinical interviews and make use of other colleagues expertise when needed (e.g. SLT communication assessments and OT functional skills assessments).
A further challenge is in helping other, mainstream services to firstly understand and secondly to include the needs of people with learning disabilities and dementia. We are keen to work jointly with LBRuT and other agencies committed to supporting people with dementia to ensure that the needs of the client group we work with are understood and met. We would also like to share any guidance and expertise we can offer to help other agencies who may work alongside people with learning disabilities and dementia.
Make the dementia care pathway more accessible for people with learning disabilities
We hope to consider and implement ways to make the dementia care pathway more accessible, including:
- Considering making an accessible dementia awareness training session for people affected by learning disabilities which is delivered to raise awareness of dementia in people with learning disabilities and not just delivered when someone is diagnosed with dementia.
- Considering meaningful ways to include people with learning disabilities in dementia care pathway reviews.
- Publishing the work that our SLT colleagues have done in producing a dementia story explaining dementia to people affected by learning disabilities.
2015 - First Quarter Update
Service development work within YHC to continue to review and develop the dementia care pathway
We aim to re-start our multi-disciplinary dementia service development group to continue to review and progress the services we offer for people with learning disabilities and dementia. As part of this, we aim to work closely with colleagues in other agencies (e.g. as part of the RDAA) to share information about our dementia care pathway and help other services understand the needs of people with learning disabilities and dementia.
2015 - First Quarter Update
Review and develop the effectiveness of our dementia assessment measures to ensure we are using the most effective tools in assessing dementia, which could aid earlier diagnosis and hence, better outcomes
Through the service development group, we aim to:
- Work jointly with colleagues in the MDT to review the clinical sensitivity and effectiveness of our dementia assessment tools and make any necessary changes/additions to ensure our assessments are capturing the early changes in dementia.
2015 - First Quarter Update