- Staying well, connected to others and resilient
tide - Together in Dementia Everyday Connecting carers of people with dementia
tide (Together In Dementia Everyday) connects, mobilises and enables carers of people with dementia to recognise their own value and their contributions to society. Tide offers them opportunities to use their individual and collective experiences of caring to influence policy and practice.
What is the innovation?
We believe carers are the agents of change and we work to enable them through our two main components: the carers development modules (a set of courses to develop their wellbeing, speaking skills, organising skills and understanding of systems) and the carers network (a group where carers can communicate, provide peer support and encouragement. The network informs the development programme and vice versa.
Many organisations have projects that are co-produced but co-production is our entire model.
Care provided by UK’s unpaid carers is worth an estimated £132 billion p/a – more than NHS England’s annual budget. There are currently 700,000 identified unpaid carers for people with dementia. Both of these figures are set to increase over the coming years with an aging population and increased societal knowledge of dementia leading to earlier diagnoses. 72% of carers said they had suffered mental ill health as a result of caring, with 61% suffering physical ill health.
These statistics show the scale of the problem but within these numbers there are stories of individual carers struggling to navigate the maze of local health and social care systems, juggling work with care and trying to maintain their human right to a family life. The shifting nature of health and social care provision means that carers feel like they are constantly playing catch-up.
tide offers personal development to unpaid carers for people living with dementia so they can improve their own lives and the lives of others in similar situations.
tide is at the centre of a social movement of carers who contribute to policy, practice and their own communities. We provide influencing opportunities to carers and support them to be meaningfully involved in the decision making processes about them at local, regional and national levels.
Some of the examples of tide carers' speaking and influencing activities are: having a seat at the table at Dementia United shaping the design and delivery of dementia care agenda in the devolved social care system of the Greater Manchester area; training future health and social care workforce at Betsi Cadwaladr University Health Board; delivering key plenary session talks at UK Dementia Congresses.
tide follows a self-efficacy approach based on Bandura's theory. Self–efficacy is the belief in one’s own ability to successfully accomplish something. It tells us that people generally will only attempt things they believe they can accomplish and won’t attempt things they believe they will fail. The tide model follows this pattern by helping carers to build up their resilience, self-efficacy, confidence to challenge and take action through taking part in tide's development programme for carers and being part of a network at the heart of which is peer support and a collective voice.
tide works to three outcomes:
1) Carers of people with dementia report increased connectedness to others, a greater sense of self-efficacy and feeling part of a collective voice.
2) Current and former carers gain confidence, knowledge and new skills that will increase their ability to influence positive changes in policy, commissioning and services.
3) Development of policies, research, education, commissioning and services will be more responsive to carers' needs by the inclusion of the voice of carers through the tide network at local, regional, national and international levels.
The expected impact is two-fold: carers ready to challenge and shape decisions about them at all levels thus ensuring that the health and care systems are attuned to their needs; system leaders recognising carers as experts and respecting and including their voice.
Over the past three years of lottery funding over 300 carers have been supported.
We believe carers are the agents of change and work to enable them through our two main components – The carers Development Programme (a set of courses to develop their wellbeing, speaking skills, organising skills and understanding of systems) and the carers network (a group where carers can communicate, provide peer support and encouragement).
In October 2018 tide secured £1.2milion of funding from Big Lottery to scale operations into Wales, Northern Ireland and north east England.
What would councils/health organisations/local areas need to do or have in place to enable it to develop?
Local areas need truly integrated health and social care with an understanding that involving carers in decision-making about services will lead to better services. Manchester is one area where this is being developed. tide has been commissioned by Dementia United as part of the devolution agenda in the city to run a Dementia Carers' Expert Reference Group.
tide insists that our members are given a fee in line with NHS recommendations about patient involvement, as well as costs for replacement care and travel being covered. This is a material way of showing that carers' opinions will be valued.
What would kill it?
More reductions in the services carers can receive. They are only able to be involved in strategic discussions when they can take part knowing that the person they look after is not suffering from poor quality care due to their decision to get involved.
Cost-cutting in local provision also means that commissioners are more protective of money that doesn't go directly to frontline services, even though innovations like ours will over time reduce the strain on frontline health services.
Carers have distinct needs and respecting carers as people in their own right sounds simple but many people in positions of power seem unable to do this.