OCCUPATIONAL THERAPY CONTRIBUTIONS TO POST DIAGNOSTIC SUPPORT: LIVING WELL WITH DEMENTIA ALISON GROAT JENNY REID AHP PROJECT LEAD AHP DEMENTIA CONSULTANT Alzheimer Scotland NHS Lothian

OUTLINE Background Phase 1 – Supported Self Management Training - Development of Approaches Phase 2 – Scoping of current AHP Contribution to Post Diagnostic Support in Dementia Phase 3 – Recommendations on the way forward

Back to 2010….

Improved post diagnostic information & support needed

Need to develop new ways of working to facilitate early intervention & timely access to AHPs

Starting the conversation Master class – Spring 2011 “Supporting people with dementia: a self management approach” Claire Craig (Sheffield Hallam University) www.video3uk.com/alzheimersresourcelibrary

Survey in Summer 2011 273 AHPs responded Lots of variation in practice Most had not had any training in early interventions or SSM Self referral was the least common route Several barriers highlighted….

What were the barriers? 1. Lack of experience in this area 2. AHPs not in teams for people with early stage dementia 3. People with early stage dementia not prioritised in service 4. Lack of time to research new area of practice 5. Lack of time to develop new area of practice

Keeping the conversation going 12 road shows – over 330 AHPs attended Consider existing good practice How to build more opportunities

Post diagnostic support guarantee

And then Scottish AHPs got very busy…. Memory skills groups Supported self management groups Cognitive Stimulation Therapy (CST) Physical activity Memory Rehab Partnership working Producing resources Sharing knowledge & skills

Connecting People, Connecting Support. Sharing the journey so far… Connecting People, Connecting Support. http://www.video3uk.com/alzheimersresourcelibrary

AHP National Delivery Plan, Action 2.6 “AHP directors and AHP leads in local authorities, working in partnership with Alzheimer Scotland will work to ensure the multisectoral delivery of early intervention and post-diagnostic support for people with dementia and their families and carers in line with the national commitment”

DeMEntia : why now? The Scottish Dementia Working Group has always listed post diagnostic support as one of its top campaign priorities because the group knows from first-hand experience how important it is to have help and support following a diagnosis of dementia.

Project Charter – Phase One Problem Statement: We have no national overview of the current post diagnostic support the Allied Health Professions are involved in. There is also no clear understanding of the links between Alzheimer Scotland Link Workers and AHP Services. We feel that there is potentially an inequitable Service nationally with under utilisation of AHP skills in enabling people to live well with dementia. Explain about the DLWs

Project Steps: Engagement with Action 2.6 Board Leads (nominated by AHP Directors) in 11 Health Board areas and other stakeholders Literature Review of post diagnostic support in Dementia including the work of the AHPs Alzheimer Scotland Dementia Link Worker Scoping AHP Scoping of 5 main professions involved in Post Diagnostic Support: Dietetics, Occupational Therapy, Physiotherapy, Podiatry and Speech & Language Therapy Analysis report, sharing of findings and recommendations

Data Gathering Dementia Link Workers: Allied Health Professionals: 49 Surveys completed (response rate 74%) Allied Health Professionals: 147 respondents identified a role in Post Diagnostic Support 75 Occupational Therapists identified a role in Post Diagnostic Support (51% of overall respondents) 16 Semi structured telephone interviews were also carried out with DLWs and AHPs ? Several of DLWs came from OT background

Key Message 1 - There is a lack of clarity around the role of the AHPs working in Post Diagnostic Support. “In your opinion, do potential referrers have enough information about what OT can offer in post diagnostic support in dementia?” (N = 55) Yes = 18% Don’t Know = 33% No = 49% “I believe that Occupational Therapy is still an unknown profession, especially in dementia care and management....I currently work with service users who see me as the “equipment provider” which in some essence is Occupational Therapy but there is so much more to offer people with a diagnosis of dementia to live at home and receive the support they require.” - There is a lack of clarity and consistency around referral to AHPs - When partnership working occurred between the AHPs and DLWs, it was viewed very positively. There is an enthusiasm for more partnership working. “the joint working I have undertaken in this post to date has been some of the most rewarding and has ensured better outcomes for the person with dementia.” - Dementia Link Worker

Key Message 2 - There is a lack of clarity and timeliness (to enable early intervention) around referrals to the AHPs “Do people with dementia have access to your Service at the right time in order to receive OT interventions in post diagnostic support?” (N = 54) Yes = 28% Sometimes = 63% No = 9% “often we are receiving referrals once a person’s skills/function is causing concern/risk rather than when they are newly diagnosed in order for us to do some teaching/education and preventative work”

Key Message 3 - AHPs are keen to increase their knowledge and understanding of post diagnostic support in dementia “How would you rate your understanding of post diagnostic support in dementia?” (N = 56) Very Low = 0 Low = 9% Moderate = 45% High = 30% Very High = 16% “I attended the AHP post diagnostic event this year” Compared to the other AHP Groups, OT had the most overall responses in high and very high. Also asked about specific training in Dementia OT had most awareness of whether there were DLWs and how to access them

Many examples were provided and include: Key Message 4 - There is a wide variety of AHP led interventions being provided in post diagnostic support but there is a limited evidence base “What OT interventions in post diagnostic support do you currently provide in Dementia?” (N = 52) Many examples were provided and include: - Functional assessments - Supported self management approaches and advice - Post diagnostic groups Memory techniques/skills/rehabilitation Cognitive Stimulation Therapy "a joined up thinking" as to what OT/AHP can provide generally would help the identity of OT with dementia”

Key Message 5 - There is a high level of enthusiasm and potential for more partnership working/consultation between the AHPs and Dementia Link Workers “Do you carry out partnership working with the Dementia Link Workers (e.g. Joint visits, groups consultation)?” N = 54 Yes = 43% No = 57% “If No, is this something you feel would be beneficial?” N = 31 Yes = 71% Don’t Know = 29% No = 0 “I recently did a joint visit with one [Dementia Link Worker] and it was so helpful – she knew the patient so well and it helped me with my treatment plan”

Summary It has been identified from the scoping exercise that people with dementia and their carers are not receiving equitable input nationally for rehabilitation and enablement. AHP skills are not being utilised to their full potential in order to support people to live well with dementia in a homely environment.

Recommendations (in progress) 1) Increased clarity around the role of the AHPs in Post Diagnostic Support 2) Improved clarity and timeliness around referrals to the AHPs 3) Increased knowledge & understanding of PDS for the AHPs including awareness of, and access to DLWs 4) Continued contribution to the evidence base of AHP led interventions in post diagnostic support 5) Opportunities for partnership working & consultation between AHPs & DLWs have been maximised

Development of change programme to improve access to Allied Health Professionals for both the Alzheimer Scotland Dementia Link Workers and people living with dementia. Outcomes will be integrated into the delivery of Action 2.6 AHP National Delivery Plan and Commitment 4 of Scotland’s Dementia Strategy

The journey continues...... The aspiration is that having access to the expertise of the AHPs in the first year will enhance the ability of people with dementia to live well within their own homes.

Occupational Therapy contributions to Post-diagnostic Support Want to know more? Webcasts www.video3uk.com/alzheimersresourcelibrary Supporting People with Dementia: A self management approach Connecting People, connecting support Many more….. Our communities of practice AHP best practice in dementia community (including page on early intervention & supported self management) http://www.knowledge.scot.nhs.uk/dementia/communities-of-practice/national-ahps-best-practice-in-dementia-network.aspx National Delivery Plan dementia community http://www.knowledge.scot.nhs.uk/ahpcommunity/ndp-workstreams/dementia.aspx The publication… http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4052050/02295%20AHP%20report%20on%20post-diagnostic%20support.pdf Social media Our blog is another way of sharing the “hidden treasures” of how AHPs can contribute to helping people live well with dementia. http://letstalkaboutdementia.wordpress.com Get in touch with us…. Alison Groat @AliAHPDem Alison.groat@nhs.net Jenny Reid @JennyAHPDem Jenny.reid2@nhslothian.scot.nhs.uk Allied Health Professionals (AHPs) in dementia care Engaging….. Enabling……. Empowering

References Scottish Government (2010) Realising Potential: An action plan for the allied health professionals in mental health Scottish Government (2013) Scotland’s National Dementia Strategy, 2013-2016 Scottish Government (2013) AHPs as agents of change in health and social care; The National Delivery Plan for the Allied Health Professions in Scotland, 2012–2015. [online] Available: http://www.scotland.gov.uk/Resource/0039/00395491.pdf