Friday 13th October 2017 - Hello to the Scottish Universities Insight Institute from

Co-ordinators – North UK Paul Thomas South UK Rachel Niblock www.dementiavoices.org.uk Co-ordinators – North UK Paul Thomas paul@myid.org.uk 07510284760 South UK Rachel Niblock niblock@myid.org.uk 07720538851 JRF Joseph Rowntree foundation

A UK Network, DEEP connects people Over 80 Groups from South Uist to Exeter (and everywhere in between!!) The independent voice of Experience Influencing and informing attitudes, research & communities Being Positive, Creating Hopefulness Promoting Human and Dementia Rights……..

“Things should be clear and tidy, and if everyone is kind to each other it will work out.”

Dementia Strategy - 3 main challenges Timely person-centred, flexible support for people living with dementia and their carers across a range of settings. Person-centred care and support throughout the course of “the illness” Continue to redesign and transform services in the community and also ensure that palliative and end of life services are flexible and responsive to individual needs.

“It is important to get the correct diagnosis “It is important to get the correct diagnosis. “Dementia” is not enough, there are many kinds of dementia, which can benefit from different medications. They wouldn’t just say “You have cancer” and send you away. We have the right to more specific information.”

The Dementia Strategy is focused on improving “services” It is therefore “Service Centred” and could be said to be an example of “Policy based evidence making.” Underpinning structure - Alzheimer Scotland’s 5 Pillar – 8 Pillar - end of life care “Pathway.” What evidence supports this?

Blake Stevenson 2017 “Evaluation of the effectiveness of “8 pillars” model of …. Support.” July 2017. 3.15 "The data is based on a relatively small sample and the time periods for each area are not completely identical. That makes it difficult to draw out much meaningful interpretation that could be said to apply more generally.“ 4.19 "Overall, the perception of those interviewed is that patients do not really fit into the overall model of 5 pillars, a period of self management, followed by 8 Pillars integrated support, followed by an advance stage support period......

“I tried to cross the bridge of “self-management” between the 5 pillars and the 8 pillars and it collapsed. It is not there.” “Without a Self Directed Support Toolkit we are being “done to” and we are not in control of our lives.”

Blake Stevenson report refers to the Life Changes Trust (LCT) and its funded projects, yet the Strategy makes only slight reference to LCT and Dementia Friendly Communities, other than to say there should be “more”. Strategy emphasises “clinical” or “care” pathway, minimal reference to “psycho-social” contexts. The Strategy makes slight reference to “Rights” – limited to “Equalities” Commitment, which is focused on ensuring access to services, and workforce issues.

The Strategy includes no reference to the complex issues of capacity, proxy and supported decision making, or other legal issues. “We will achieve person centred care when it is related to our human rights.” COMMITMENT 15: We will support implementation of NHS Health Scotland’s report recommendations on dementia and equalities.

1. Our Right to and get out and about 2. Reducing Stigma. Priorities from Gatherings 2017 1. Our Right to and get out and about 2. Reducing Stigma. 3. Improving Diagnosis and Medication experience. 4. Addressing Bullying and Victimisation. 5. Support all the way through the dementia journey. 6. Connecting and reducing loneliness, using Technology, Creativity and Community.

7. The Right to Self-Management (developing resources and support) 8. Doing normal things- what we want to do 9. Using Culture and Creativity 10. The Right to keep our relationships going 11. Gathering together – ending loneliness 12. Clear accessible Information and understanding 13. People living with dementia to lead research.

“I want to see a world which accepts dementia” “Living with dementia is a journey – you can find new ways to use your brain and learn to outmanoeuvre dementia.” “Dementia is mainly loneliness – you can find community in all sorts of places, not only in dementia “services”.”

“We are still the same person, we just live in a different way.” “Connections between mum and daughter, husband and wife, can get very difficult, we have a right to relationship help, not just through the lens of dementia, because sometimes we hurt the ones we love the most.” “Join us in our journey of hopefulness. When I told my doctor of all the positive things I was doing, he said, “Now Maria, you must understand that you will not get better.” – Why did he have to say that?”

“Listen to the quiet voices.” The Diagnostic and Prognostic Evidence may say that “things are getting worse” but the narrative of the person’s experience may say that “things are getting better.” DEEP doesn’t try to tell us about dementia, DEEP listens to what we have to say.” “Listen to the quiet voices.” “People living with dementia can contribute and help to change the world for everybody in the future.”

Some other DEEP responses to the Strategy: A lack of ambition. A move away from the “bottom up” approach of Dementia Friendly Communities. No detail about any of the planned actions and commitments. No commitments to family carers, just refers to “needs”. No mention of prevention despite lots of evidence to advise policy If you are not diagnosed early enough will your needs be met? If you don’t want Post Diagnostic Support in your first year, can you have it when you want it? Lack of consistency with discussions held in consultation events. Final version heavily influenced by a closed group. Why do we need a third strategy? What was wrong with the second one?

“Dementia is not always about older people and memory “Dementia is not always about older people and memory. It is also about sensory challenges and dysphasia.” Using creative and cultural opportunities and thinking outside the box to make sure that people with very quiet voices can be heard. The Third Scottish Dementia Strategy mentions all the important elements but reads more like a business plan for the principal providers (NHS, Local Authorities, Alzheimer Scotland). It is service, not person centred. Not everybody effected by dementia accepts the inevitability of the “care” pathway, because it does not meet everybody’s needs.

Dementia Engagement and Empowerment Project – A Social Movement. Sanskrit – DEEP means the light from the lamp of enlightenment. DEEP creates positive narratives. Change from the ground up, the “World Turned Upside Down.” Thankyou.

Reference addresses http://ihub.scot/media/2395/evaluation-effectiveness-8-pillars.pdf http://www.healthscotland.scot/publications/dementia-and-equality-meeting-the-challenge-in-scotland http://www.gov.scot/Topics/Health/Policy/Dementia http://www.dementiavoices.org.uk http://www.lifechangestrust.org.uk