1. tide – together in dementia everyday
Beau Nieuwenhuijs tide Regional Care Engagement Lead – West of Scotland
Strathclyde University Carer’s Peer Support Network Tuesday 29th May 2018

2. What We’re Going to Talk About
Who we are and why tide came to Scotland
Why focus on carers for people with dementia?
The benefits of investing in the development of carers
What we can offer carers who want to join tide

3. But first
Memory Spinners – Scottish Opera

4. Dementia in Scotland - quick overview
Approx. 93,000 people have dementia in Scotland in 2016
Around 3,200 of these people are under the age of 65
Numbers projected to increase to 108,000 by 2022.
Over 788,000 (adult) unpaid carers in Scotland
29,000 (young) unpaid carers in Scotland
1 in 8 of the Scottish population is involved in providing care and support to a family member, friend or neighbour, many of whom have dementia.
17% of Scottish adults are carers
A recent report on Delivering Integrated Dementia Care predicts that the number of people with dementia in Scotland is projected to increase to 94,000 by 2017 and 108,000 by 2022
Carers Trust Report

5. Why Focus on Family Carers of People with Dementia?
They’re the biggest workforce in dementia care – providing 44% of the total cost of care.
They save the public purse at least £11bn per year (UK figures)
They face particular difficulties due to the complex, unpredictable and progressive nature of the illness.
69% reported that caring had a negative impact on their physical health.

6. Why tide in Scotland?
Despite the work of some groups including NDCAN, carers of people living with dementia in Scotland are still:
Not always adequately involved in decision making at all levels from local communities to national policy level;
Not adequately represented in terms of the diverse range of carers across Scotland
Not adequately developed, enabled, supported nor empowered to exercise equality in their relationship with professionals;
Not supported by a developmental infrastructure
Scotland’s Third National Dementia Strategy has 21 commitments and not one of them is specifically focused on carers!!!

7. What is tide offering in Scotland?
Investment from LCT of £1.4m in Scotland and a clear commitment to:
Establish a national tide network accessible throughout Scotland.
Establish a Scottish tide Advisory Group
Design and deliver our tide carers development programme
Committed to both an self evaluation and external evaluation

8. tide’s Mission Our mission is to:
Connect carers with other carers – developing a truly unique network
Provide carers with the tools and support to help themselves and others
Speak on behalf of people who can’t speak out for themselves
Challenge perceptions of carers in society
Campaign for better carer support
Influence Government legislation and policy
Educate people, organisations and society on the importance of carers

9. Work Programmes 2018
Young carers
LGBT carers
BME carers
Employment

10. What is tide offering in Scotland?
Using their lived experience, tide will support a diverse range of carers to have a powerful collective voice, which raises awareness of their unique needs and rights so that we can influence practice, policy and research at all levels 
Through tide, we will ensure that the needs of carers of people with dementia are truly recognised and respected
 tide Development Programme: co-designed with carers

11. Development Programme
Giving you the tools and confidence to use your experience in a positive way
Modules available:
You Can’t Pour From An Empty Cup
Maze Runner
Presenting to Influence 
: module list

12. Opportunities Putting your new skills into practice
tide support before, during and after any event you speak at
Influencing national policy research and changing practice
Be part of a social movement of carers capable of bringing about real change
Be part of a team

13. Telling your story: right place, right time
Cross party groups in Scottish Parliament

14. Telling your story: right place, right time

15. Telling your story: right place, right time

16. Making your voice heard
We use a variety of platforms to share your message widely
Potential for awareness raising and effecting real change

17. Making your voice heard

18. Influencing change
Local Councillors
MSPs
IJB
Church
Local events

19. Thematic focus: employment
Listening to your feedback we have developed our work on employment
Now in talks with Trade Unions, employers and Carer Positive Scotland about working together to improve the working life of carers

20. Working carers of people with dementia
Most carers working full time are looking after someone with dementia
93% of working carers state that caring for someone with dementia has affected their capacity to work
Becoming a carer of someone with dementia usually happens when someone is at peak career age

21. The health impact 72% of working carers reported mental ill health
53% of working carers reported physical ill health
67% of working carers struggle to get a good nights sleep
56% of working carers reduced their exercise
47% of working carers had difficulty maintaining a healthy diet

22. A true involvement network
Encouraging and facilitating peer to peer support and sharing knowledge
Shifting our priorities in response to carer input
Showing other partners and organisations that the most effective way to work is in collaboration with carers

23. Carers: experts by experience
It’s amazing to be part of a team who are all on board to fight the same fight and to raise awareness. It feels amazing to be given a platform to let others hear what I’ve been speaking about the last 4 years.

24. Carers: experts by experience
I’ve never sat in a room before where I felt so much compassion and respect for carers and people living with dementia

25. Carers: experts by experience
I felt like someone had picked me up off the floor and valued me and my experience

26. Carers: experts by experience
Gradually as I started to feel like I wasn't on my own in the battles I fought, not only with my husbands illness but with the bureaucracy surrounding getting good care for him, with tide's support I found my voice.

27. Carers: experts by experience
“I am able to support other family carers involved at speaking at local and national events and/or involved in consultations, focus groups and other events.”

28. Carers: experts by experience
From my own experience, many of the resources and provisions of support for carers are not easily accessible for those who care but who have daytime work commitments. Lots of things are more readily suited to those who are not in paid employment but for those who still have to work alongside fulfilling the responsibilities of their caring role, the need for resources and support is just as great. For that reason I am grateful for what you are seeking to do address this need.

29. What happens next? Sign up free of charge to join the tide network
Have as little or as much input as you feel comfortable with
Receive information and news on what is happening for tide in Scotland and the rest of the UK
Have the opportunity to connect with other carers
Access our bespoke development programme modules
Options to become involved in projects and opportunities to have your voice heard through tide

30. What we can do together
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”

32. Keep in touch! Contact - beau@tide.uk.net Tel: 0141 353 4311
Mobile:
@tide_carers on twitter