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"Life story" – an interesting example of networks being used constructively for innovation in dementia

Innovations which have a goal of improving wellbeing have a very good future in dementia care. Those which harness networks are likely to be particularly successful.

There are currently 800,000 people with dementia in the UK, with over 17,000 younger people. There are therefore serious questions as to how to maximise their chances of living well as individuals, as far as possible.

New innovations for people living with dementia are not at all trivial. One broadly accepted definition of an innovation is “the adoption of an idea or behavior, whether a system, policy, program, device, process, product or service, that is new to the adopting organisation”. A “strategy innovation” means thinking in an entirely new way about the basis on which the organisation, system or industry operates.

The assumption that dementia is best managed through a medical model with drugs that can cure or treat well the symptoms has necessitated challenges, not least because many of the medications are ineffective for many.

A ‘person centred approach’ places the person at the centre of their own care, and considers the care and support provided by others, and not simply as someone with dementia. “Person-centred” care, to improve individuals’ wellbeing, was first initiated in the U.K. in the 1990s by professor Tom Kitwood, who treated people with dementia as individuals, referring to their “personhood” to reinforce the fact that they still experienced emotions, both positive and negative.

Indeed, Prof Sube Banerjee, the new Chair of Dementia at Brighton and Sussex and Medical School, has demonstrated with colleagues that wellbeing in dementia can be dissociated from cognitive performance.

A plan for person-centred care in dementia, launched in France in 2008 together with the use of internal day care centres within nursing homes, dramatically reduced the prescription of anti-psychotic drugs – in some cases to zero. So a clinical and financial rationale for such innovations can be found.

A nice example of a community interest group which has implemented networks in introducing a philosophy is called “Life Story Network” (LSN).

Specifically, a ‘life story’ or’ life history’ is the term usually given to describe a biographical approach, which involves reviewing and evaluating an individual’s past life events. It involves working with a person and/or their family to find out about their life, recording that information in some way and then using the information with the person in their care.

It therefore is an excellent example of a person-centred approach in dementia care.

Whilst based on the principles of reminiscence and storytelling, it is distinct in that it also involves a critical review of life events and identifies present/future wishes.  Ultimately relevant aspects of a person’s past and present life are recorded with the aim of using this information to benefit them in their present situation.

As interest in integrated models of care continues, see for example the recent “Oldham Commission in Whole Person Care“,  this matter has become particularly relevant to all leaders in NHS and other care providers (including social care).

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and ‘Life Story work’ might provide a way for them to do this more easily.

LSN is a social enterprise which works with a range of partner organisations individuals. Social enterprises are well suited to deliver person-centred care, as they are typically dynamic and diverse businesses set up to address social or environmental need. promote the value of using life stories to improve the quality of life and wellbeing of people and communities, particularly those marginalised or made vulnerable through ill health or disability.

The benefits of such an approach include promoting increased understanding of the person and supporting the delivery of person-centred care. Other benefits include improving relationships between family caregivers and staff within inpatient settings.

Life stories also provide a valuable insight into the life of someone especially when they have difficulty in sharing this information themselves. Life Story work can be used to help develop a better understanding of someone needs and wishes so that care can be provided in a person- centred way.

According to the “Your Community Matters” Report produced by LSN in July 2013, there is a wealth of evidence, both global and national, which supports a more integrated, community based wellbeing approach to enabling individuals to remain connected with their support networks where they live. This approach puts a positive value on social relationships and local support networks, on self confidence and the ability of people to take control of their circumstances.

People with dementia and their families are to play a pivotal role in a pioneering study being led by Kate Gridley into the effectiveness of using Life Stories to influence their care and improve their quality of life. This new 30-month study will provide an essential evidence base for the technique which has the potential to help many of the people in the UK with dementia, as well as the people who care for them.

Researchers will carry out a systematic review of literature on Life Story work and gather qualitative data through focus groups involving people with dementia, family carers and professionals. They will then develop a theoretical good practice model of Life Story work as well as surveying the current use of Life Story work in dementia care across England. Finally, the researchers will assess the potential effects and costs of using the technique in specialist inpatient and long-term care settings, and consider further evaluation.

Networks are crucially important for the functioning of networks. A view has arisen that social networks such as Twitter act as innovative broadcasting devices, connecting people’s need for information and attention. But they are fundamentally collaborative.

The basic premise of social networks – allowing users to build a custom group of friends and colleagues with whom you can choose to selectively interact –is its broad appeal. But this premise has, in fact, been around for many decades in science research. Contrary to the popular image of the lone scientist toiling away in an isolated lab, just about all scientific discovery is a collaborative effort that requires extensive networks of lab teams.

The Twitter account @LifeStoryNetwrk is relatively young. People can choose also to interact with traditional competitors on such networks, and this can drive innovation. The dilemma is: if these actors collaborate, they become stronger competitors, but they also strengthen their rivals’ positions.

The advent of the Internet has provided new opportunities for collaboration thought impossible just a few years ago. Exchanging ideas and work by e-mail or Wikis, for example, has opened up new avenues for spontaneous communication.

Virtual teams such as  “Collaborative Innovation Networks” (COINs) are already in existence. COINs are virtual teams of self-motivated people with a collective vision, enabled by technology to collaborate in achieving a common goal – an innovation – by sharing ideas, information, and work.

An example of a COIN in the LSN is its online forum, where information can be shared and discussed. This demcoratising effect means that we can influence the future, through contributing in an online network to Commission on Residential Care which is secure and typified by peer support. 

This approach was been widely adopted already in the dementia sphere. Towards the end of last year, exciting new proven benefits in the training of dementia staff in Australia were published.

It is very likely that social enterprises will act as drivers of good innovation practice in dementia care. Pooling of abilities in the EU SELUSI initiative, for example, is a testament to this. One of its aims is “to create a trusting environment with social enterprises across Europe, as well as generate new evidence that could usefully inform the practices of network organizations” (sic).

Working together to improve the wellbeing of a person with dementia is not simply an innovation. It’s common sense, as it potentially improves something for persons with dementia we can do something about.

That is, their wellbeing.

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  • Marian Naidoo

    I am a great fan and believer in Life Story so very supportive of the work of LSN. As a theatre practitioner I understand the role of narrative in both helping us to understand ourselves as we reflect on and communicate our lived narrative to others and how we understand and respond to the “other” as we hear and listen to their unique stories. It is our own narrative that forms and reforms our sense of our selves and our identity. This is important in sustaining a sense of Wellbeing when living with Dementia in particular as identity and sense of self sometimes needs to be reinforced. With regard to person centred practice I do prefer the use of inclusional and responsive practice (Naidoo 2005). In my experience person centred can in practice mean doing to, doing for and even doing at. Inclusional and responsive requires a relational dynamic, a being with in the moment together and responding in a way that acknowledges and is respectful of the “other”. I am because we are!