On the eve of Dementia Awareness week (15th to 21st May), it is timely to take stock of progress made, to agree priorities for professional education and research and to consider how we can communicate innovations to best effect.
There have been positive developments in the treatment of dementia. Dr Dennis Gillings who recently stepped down as chair of the World Dementia Council expressed optimism that treatments to remove plaques in the brain, combined with brain training, could stop or reverse dementia symptoms. Interventions to ‘untangle some neural tangles’ could lead to regeneration. Dr Gillings raised the question of the accessibility of treatments when they become available as the NHS may not agree to fund them (http://www.telegraph.co.uk/news/health/elder/12174547/Dementia-cure-may-be-just-five-years-away-says-world-expert.html ).
Resource allocation in the NHS raises ethical issue such as: Who gets what and why? Which treatments should be provided and which should be withheld? And how can we justify prioritising treatments for one group of patients over another? These are important questions that require public and expert engagement. However, they are not the only ethical questions relating to the experience of people with dementia and their families.
We would do well to remember a fundamental question posed by Mary Warnock in 1984: What kind of society can we praise and admire? Media attention to dementia treatment innovations, the quest for cure and the aspiration to ‘fight’ and ‘defeat’ dementia are appropriate. However, they are not and should not be the whole story.
Enabling people with dementia to live as well as possible requires care. Good care requires engagement with a different set of ethical questions: How do we ensure that people with dementia are meaningfully involved in everyday decisions that relate to, for example, activities, dressing, food, drinks and intimate care? How do we work well with families and friends so they get the support and help they need? And, at the same time, ensure the interests of the person with dementia come first? How should care workers allocate their time when resources are constrained? And what form of ethics education needs to be in place to enable care workers to develop ethical sensitivity and to feel confident to advocate for older people in their care?
The society we can praise and admire is one in which attention is paid to initiatives that illuminate ethical aspects of dementia care and aim to create cultures of home and residential care that enable people with dementia and their families to have the best lives possible. Too often, care workers report that they see only relentless attention to negative aspects of care which is demoralising. They ask ‘Why don’t journalists report good news stories?’
The development of Solutions Journalism (SoJo) appears to offer an opportunity to have more positive engagement with the media (http://www.solutionsjournalism.org/). This has been described as investigating and explaining ‘in a critical and clear-eyed way, examples of people working towards solutions. It focuses not just on what may be working, but how and why it appears to be working, or alternatively, why it may be stumbling’.
Research and education activities in our own School of Health Sciences relating to dementia – and the care of older people more generally – are the kinds of initiatives that are worthy of SoJo attention. Four projects in particular engage with the what, how and why of the ethical care of older people:
- The RIPE (Researching Interventions that Promote Ethics in social care) project tests three different approaches to ethics education for care workers in residential care for older people (see https://workspace.cimediacloud.com/r/92fLer );
- Time for Dementia is a four year collaborative project led by Professor Sube Banergee, involving students from the University of Surrey and Brighton Medical School. The project aims to provide nursing, paramedic and medical students with longitudinal (three years) experience of visiting people with dementia and their carers at home. The overarching principle of dementia care should be supporting people with dementia to maintain or improve their quality of life. The aim is to personalise education by focusing on the experiences of people with dementia, rather than their diagnosis and to ensure they have a voice (See http://www.sussexpartnership.nhs.uk/whats-new/time-dementia-2 );
- The Technology Integrated Healthcare Management (TIHM) Project aims to evaluate the impact of a combination of connected supportive care eHealth technologies on the outcomes of people with dementia and their carers. The study will also measure the costs associated with using this combined intervention and its impact on care delivery and the workforce See (https://www.england.nhs.uk/ourwork/innovation/test-beds/tihm ).
- TiME (This is ME) is a co participatory research project that aims to explore and evaluate the feasibility and acceptability of a digital story based solution (ICT system product) to assist communication between formal (professional care home staff) and informal carers (family/friends) and people with dementia living in residential care home settings. This project is a collaboration between the School of Health and Digital World Research Centre in the University of Surrey but also involves key stakeholders from the dementia care research and policy world.
So there is then much opportunity to draw attention to initiatives that enable people with dementia and their families to have the best care and support possible. There is an opportunity also to better understand and reflect on the everyday ethical issues that arise in care. Care research offers the opportunity to find out what works and why and how in one of the most important and complex areas of practice in our society.
In the months and years to come, we will look forward to engaging with those committed to Solutions Journalism. Together we can have a greater impact on current and future dementia care so can have a society we can praise and admire.
Professor of Ethics and Care & Colleagues in the School of Health Sciences, University of Surrey