TIDE carers network Scotland

National project
Award: £1,383,676
Timescale: March 2017 - February 2021

Project aims

Tide means ‘Together in Dementia Every Day’.  Tide is a national involvement network for carers and former carers of people with dementia hosted by the Life Story Network CIC. This is a parallel funding initiative with the Big Lottery Fund UK which currently funds the TIDE network in the north of England.

In Scotland, Tide will bring carers together 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, national levels – starting at the local level
  • speak on behalf of people who can’t speak out for themselves
  • provide carers of people with dementia with the tools and confidence to help themselves and others
  • educate people, organisations and the public on the important role that carers of people with dementia perform
  • connect carers of people with dementia with each other, creating a peer support and involvement network, also retaining support structures after their relative/friend with dementia has passed away

Tide will: 

  • deliver a carers development programme, designed to be supportive, flexible, enabling and co-ordinated, to give carers practical skills plus emotional and psychological support to enable them to share their experiences constructively
  • work initially at the local level, seeking to work with existing organisations and networks
  • collaborate with DEEP.  TIDE and DEEP have distinct differences but their key aim - collective advocacy - is the same

Background

The Life Story Network (LSN) is a Community Interest Company based in Liverpool that works throughout England. They promote the use of life stories and narrative approaches to help people retain their sense of self and remain connected with their families, friends and communities. 

Although this approach can be used with anyone, it is particularly helpful for people living with dementia, whose impairments may make it difficult for those supporting them to get to know them and understand their past lives, current needs and future wishes. Life story work provides a way of reconnecting individuals. It recognises the uniqueness of the person with dementia and their life experiences, which influence not only who they are and how they behave, but also their hopes and wishes for the future. 

This helps to preserve their unique identity and enable their dignity and rights to be recognised and respected. It recognises that in order to improve the lives of those living with dementia, it is also vital to support those providing their care. 

Each of the Directors of LSN has been a carer of a family member or friend with dementia. This common experience has brought them together to establish a community interest company for the benefit of vulnerable people, especially those living with dementia and their carers.  

It is through their unique experiences that they have been involved at all levels of policy and research in England to represent and lobby for better care and support for carers and those living with dementia.  

More Information

There are around 670,000 unpaid carers of people with dementia in the UK, saving the economy an estimated £11.6 billion per year. This equates to 44% of the total cost of dementia care.

Three out of five of us will become carers at some stage in our lives and 1 in 10 of us is already fulfilling some sort of caring role.

Many carers of family or friends with dementia feel 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. It is therefore unsurprising that two thirds of carers report having suffered from depression as a result of caring.

It is vital that carers themselves 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.  

For this reason, the Life Changes Trust decided to fund a TIDE network in Scotland.

From the work already undertaken in England, LSN have gained a high degree of credibility and respect and receive regular requests for participation on key committees and fora at local, regional and national levels. 

This new network will bring together carers of people with dementia, not only to build their own peer support systems, but also to give them the tools and confidence to voice their needs and influence policy and practice that will improve their experiences as unpaid carers as well as the services available to those they care for.

In March 2018, TIDE published a new guide called 'Knowing Me!', which offers practical guidance on person centered care for those living with dementia, depression and delirium.

The objectives of Knowing Me! are to raise awareness and understanding of the 3D’s, drive improvements in the standards of care, and improve the outcomes that can be achieved for those affected by the 3D’s. Knowing Me! is not however a stand alone resource aimed at a particular staff group or a particular care environment but should be seen as a complimentary resource to raise the awareness and understanding of the 3Ds. Knowing Me! builds on the values and principles of person centered care and support to improve the quality of life and provides useful and practical ways improvements can be made to really make a difference. Knowing Me! is hosted by the Life Story Network, and can be downloaded on their website.

Life Story Network's mission is to transform society by using the power of life stories to unlock people's potential and improve their wellbeing. 

Download here: http://www.lifestorynetwork.org.uk/knowing-me/

Outcomes we'd like to see

  • recognition of the value of carers of people with dementia in society
  • better support for carers of people with dementia
  • government, legislation, policy and practice take cognisance of what carers of people with dementia tell them and shape policy and practice accordingly – at local, regional and national levels – starting at the local level
  • carers of people with dementia have the tools and confidence to help themselves and others
  • carers of people with dementia are connected with each other, creating a peer support and involvement network 

 

Additional Information

Read more about Life Story Network: www.lifestorynetwork.org.uk

Read more about TIDE on their website: http://tide.uk.net/