There are an estimated 850,000 people in the UK living with dementia, supported by thousands of unpaid carers. Many family carers or friends of people living with dementia report that they receive insufficient support from health and social care services, leaving them feeling isolated, burnt-out and unable to look after their own well-being. The number of carers is set to increase over the coming years, so it is vital that carers are given the opportunity to speak up for themselves and come together to raise their profile, voice their needs and influence better quality of care and support at all levels.
tide - together in dementia every day is the UK wide involvement network for carers and former carers of people living with dementia, hosted by the Life Story Network CIC. tide is being established as a separate charity, with LSN becoming a wholly owned subsidiary company. The overall aim of the tide carer network is to improve their experiences as unpaid carers as well as the services available to those they care for. In recognition of these needs, the Big Lottery is providing a three-year grant for the tide carer involvement network to become established in England, Wales and Northern Ireland.
The Carer Involvement Lead (CIL) in Wales will work closely with the National Carer Involvement Lead in Wales, the Head of Business and Performance and a wide network of partners to establish, strengthen and increase the impact of tide across Wales.
Each of the Carer Involvement Leads will have responsibility for a designated geographical locality as well as a thematic lead, which may include one of the following: carers of people living with dementia from Black and Minority Ethnic Communities; young carers of family members with dementia; or carers from the lesbian, gay, bisexual, and transgender community.
The postholder will identify and support the recruitment of carers and former carers of people with dementia to tide, ensuring that their development needs are identified and met through our development programme. The CIL will enable the effective participation and involvement of carers and former carers as equal partners in any process at local, regional and national events and research programmes. The postholder will contribute to the design, development and co-ordination of data for the self-evaluation and any external evaluation of tide in Wales and the rest of the UK.
The postholder will identify and cultivate opportunities to build connections and working relationships with a wide variety of partners and stakeholders within the sector that will encourage the growth of the network as a whole and create opportunities for network members to have their voices heard and influence change.
The post holder will be expected to undertake a broad range of responsibilities and duties at local and regional levels within Wales. These include:
- Working with current and former carers of people living with dementia
- Proactively identify and invite current and former carers of people living with dementia to join our growing tide carers involvement network in Wales and build its capacity whilst promoting and raising awareness;
- Bring together, empower and build the capacity of current and former carers to
- Challenge the perceptions of carers of people with dementia in society
- Campaign for better support for carers of people with dementia
- Influence government, legislation, policy and practice at local, regional and national levels – starting at the local level;
- Identify opportunities for current and former carers to be invited to and participate fully in events, where they can share their lived experiences to influence future dementia care and support;
- Follow up new carer and former carer members in Wales, within four weeks of sign-up, to discuss their interests and explore how they might want to be involved in tide;
- Contribute to the co-development and co-delivery of our Carer Development Programme;
- Keep in touch with participants in the Carer Development Programme to maintain their interest and enable their involvement so that they can utilise their new skills and knowledge;
- Provide current and former carers with the emotional and psychological support before during and after any engagement process, including sending out briefing documents, alerting them to the nature of the audience, environment and key themes and messages required;
- Provide current and former carers with the relevant feedback on their impact so that they know how much they are valued and respected as experts by experience;
- Signpost current and former carers to any local or national resources, which may assist them when they highlight any issues or concerns regarding their day to day or previous caring role;
- Report any concerns regarding the potential vulnerability of current and former carers and people living with dementia to the National Carer Involvement Lead (Wales) and Head of Operations in line with the organisation’s Safeguarding and Protection of Adults at Risk Policy
Working with partners
- Within the agreed geographical locality, work with a range of partner organisations, for example Dementia Friendly Communities, Dementia Action Alliances, carer organisations and the Integrated Commissioning Partnership Boards as well as other community projects, to build awareness, promote tide and recruit new carer and former carer members;
- Work with the National Carer Involvement Lead to identify opportunities to establish and build effective partnerships and joint working, especially when this enables us to achieve economies of scale, minimise potential duplication and add value to strengthening the voice and involvement of carers and former carers of people living with dementia across Wales;
- Work closely and develop collaboration with the DEEP Network in Wales, designed to emphasize their shared aim of collective advocacy and to strengthen the scope of both networks to achieve impact;
- Take a lead role for tide for an area of work, working with National Carer Involvement Leads, other CILs, the Communications and Fundraising Manager and other colleagues as appropriate to have maximum impact and ensuring that carers and former carers are involved in any projects or other opportunities that arise;
- Work with the Impact Manager to collect the relevant quantitative and qualitative information, which will contribute to our internal and external evaluation to measure the impact, outcomes and reach of tide across Wales and the rest of the UK;
- Contribute to sharing the learning and work effectively with other partners as we establish tide across the UK;
- Promote tide on social media in line with good practice and the organisation’s use of Social Media Policy;
- Liaise with the Business Support Officer to ensure that accurate information is recorded and maintained about all members in line with the organisation’s Data Protection and Privacy policies;
- Work with the Business Support Officer to ensure that all practicalities for events are organised including: transport, equipment, expenses, travel arrangements, interpreting services, providing biographies and any promotional materials;
- Participate in regular supervision and appraisals with your line manager
- Participate in training and take personal responsibility for development in the role
- Pay due attention to health and safety at all times and where necessary risk assess venues prior to an engagement activity with particular reference to tide carers as volunteers, in line with the organisations Volunteering Policy and Health and Safety Policy;
- Undertake other tasks, duties or projects which may arise from time to time, which are commensurate with the general level of this post and as directed by your line manager.