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23/09/2014

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Nothing about us without us

Older people are engaging in research about ageing, says Gail Mountain

What can older people add to science and why is their involvement important?  If older people wish to contribute what are the best ways of achieving involvement?  Who do we consider to be ‘old’ and how does this match our individual experience of ageing and that of our family and friends?

We are being continually bombarded by details of the apocalyptic consequences of the ageing population and the associated projected economic and societal costs.  However, this negative interpretation ignores the many benefits that older people can bring to society, and the need for us all to embrace and respond to the needs of an ageing population.  Ageing rather than youth will become the norm.

Old paternalism

Historically, the response of UK society to ageing has been paternalistic and, in some instances, neglectful.  We can see this most clearly through the forms of care and support that were considered to be appropriate (until relatively recently) for those who succumbed to disability and ill health.  Less overt influences still exist, such as the negative perceptions of older age that continue to be promulgated through the media, age discrimination and a general lack of consultation. 

Paradoxically, older people provide a significant workforce of volunteers and carers and extending paid working life is also inevitable.  Furthermore, there are an increasing number of role models from all sectors of life that dispel images of frailty and dependency. 

Current engagement

Older people are a significant resource, and there are an increasing number of initiatives that are actively seeking their involvement.

One example is the EQUAL (extending quality life of older and disabled people) programme through the Engineering and Physical Sciences Research Council (EPSRC).  This programme has been in existence since 1997, and has funded research projects and larger-scale consortia-based research.  

The EPSRC has also invested in a programme of knowledge transfer to ensure that the outputs of the research investment have a direct impact upon older people and upon the sectors that have the ability to make positive changes. These include design practice, health and social care, transport and planning regulations for the built and outdoor environment.  

The most recent initiative, K-T EQUAL, also actively seeks older people’s views to develop new research ideas.  From the outset, the EQUAL programme centralised the needs of older people. It adopted the understanding that first emerged from the disability lobby; nothing about us without us.

New skills for researchers

The levels of engagement that continue to be achieved through the EQUAL programme require researchers and others to acquire new skills and be willing to learn.   Every encounter will demand a slightly different approach and will require a good level of preparation.  For example, any hard copy or presentational material must be readily understood by everyone.  This can present a challenge when conveying complex academic material. 

It is also important to consider inclusivity. Even very frail individuals have an opinion and can often provide invaluable insights.   However this also means paying careful attention to any special requirements.  It is also necessary to remember that some old people (not all) do not have computer and internet access.  

The benefits do outweigh the effort that is required.  One older person, being interviewed over 15 years ago as part of a project on quality of life, said: ‘You’ve got to be counted nowadays when there’s more of the elderly than not – they’re going to have a bigger say in politics and everything.’  That person made an observation that policy makers and others have been slow to identify. The future predominance of older people means that far more account will have to be taken of their views and needs than has been in the past.

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Gail Mountain
Gail Mountain is Professor of Health Services Research at the University of Sheffield
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