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

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

But first Memory Spinners – Scottish Opera https://vimeo.com/264586222

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 2017 -

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.

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!!!

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

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

Work Programmes 2018 Young carers LGBT carers BME carers Employment

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

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

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

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

Telling your story: right place, right time

Telling your story: right place, right time

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

Making your voice heard

Influencing change Local Councillors MSPs IJB Church Local events

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

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

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

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

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.

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

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

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.

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.”

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.

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

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.”

Keep in touch! Contact - beau@tide.uk.net Tel: 0141 353 4311 Mobile: 07841 457594 @tide_carers on twitter