Living well with dementia

Today the heart breaking news of the death of best-selling author Sir Terry Pratchett weighs heavily on my mind. Sir Terry died on Thursday 12th March, 2015, following an 8 year battle with Alzheimer’s disease; a disease I lost someone very dear to me to a few years ago. Sir Terry never shied away from talking about his condition (an ‘embuggerance’ as he termed it), and became an active and passionate campaigner forAlzheimer’s Research UK as their patron, as well as advocate for controversial topics such as assisted dying.

A lifelong humanist, he staunchly believed in the power of simple human kindness, and living in cooperation with one another.  Since his diagnosis he delivered a ‘call to arms’ for society to talk about dementia and take steps towards defeating it.  He encouraged open discussion into the condition and strove to eradicate the stigma and isolation which so often accompanied it:

“There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways. There’s no clearly plotted pathway to the course of these diseases.

“Dementia attacks those facets which make us who we are, and it’s a deeply personal attack that defies prediction. And that’s the point. Every person with dementia has a unique story to tell. Words need to be put down before they run dry… or run out.”

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What can be done?

Whilst great progress is being made towards finding a cure, what can be done in the meantime to enable those currently suffering from dementia to ‘live well’ with the condition? To this end I am so pleased that WISERD is collaborating with the IDEAL Project (‘Improving the experience of dementia and enhancing active life: living well with dementia’) – an ESRC funded 5 year longitudinal cohort study which will focus on the potential for living well with dementia from the perspective of people with dementia and their primary carers.

Recent government policy has prioritised living well as a goal for people who have dementia or people who are experiencing difficulties with memory, thinking or behaviour and their primary carers (usually family members). However, there is no clear definition of what it means to ‘live well’ with conditions such as dementia and no clear understanding of the factors that might influence the ability of individuals and families to live well. There has been some work on quality of life and quality of care but these measures do not capture all the elements involved in living well.

There is a need to examine not just what it is like living with conditions like dementia, but the social and environmental context for people. Little is known about how people with dementia or memory problems and their carers make sense of and adapt to the condition and to the changes they experience over time.

Living well with chronic illness or disability has been defined as ‘the best achievable state of health that encompasses all dimensions of physical, mental and social well-being’. This project will examine how social and psychological factors influence the possibility of living well. It will identify what changes could be made at individual and community levels to make living well more possible, and will result in recommendations for social and health care purchasers, providers and planners and advice and guidance for people with dementia and those who support them.

This study will be the first to create a new and detailed longitudinal data set. This data set will be a unique resource for social science research in the UK and internationally.

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What will the project study?

This project will study various factors affecting the ability of people to live well, using the following key element: capitals, assets and resources, challenges, adaption and the ability to live well. These elements are all inter-linked.

Capitals, assets and resources refers to:

  • Social factors (such as social contact, relationships, availability of help and support)
  • Economic factors (such as income)
  • Physical factors (such as health and diet)
  • Psychological factors (such as self-esteem or optimism).

Challenges refers to the severity of dementia and the different symptoms experienced, and adaptation refers to the potential to be able to manage and cope with the challenges conditions such as dementia bring.

This project is being led by Professor Linda Clare at Exeter University, with project partners at the Alzheimer’s Society, the Brunel Institute for Ageing Studies (BIAS), theWales Institute of Social & Economic Research, Data & Methods (WISERD), Innovations in Dementia CICKing’s College Institute of Psychiatry, the Personal Social Services Research Unit (PSSRU) at LSE, the North Wales Organisation for Randomised Trials in Health (NWORTH), Sussex University, and the Research Institute for the Care of Older People (RICE)

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I shall leave the last word to Sir Terry:

“Ultimately, research is the answer. While talented scientists beaver away at finding a cure, this campaign holds a mirror up to us all – forcing us to realise we can do more in our everyday lives to help. Look past that mirror, maybe even through the wall, to the house of your next-door neighbour. Maybe it’s an older lady, albeit only in her 60s, who you haven’t recently seen popping to the shops as usual. You notice that she’s forgotten to collect her milk from the doorstep, and that when you last stopped to chat she seemed confused and couldn’t follow what you were saying. Think of how you might be able to help her – there are little things you could do to support her and let her know she’s not alone. There are hundreds of thousands of us out there living with dementia who, every now and again, really could do with a little help from a friend.”

 fundraising site has been set up is Sir Terry’s memory to raise money for the Research Institute for the Care of Older People (RICE), and has already raised over £25k.

About the author: Natalie Richards is the Communications Officer at WISERD, based at Cardiff University. She is passionate about the work WISERD undertakes – especially those areas of research related to improving quality of life in later years. 

Image source: Terry Pratchett – Jeff Moore for Dementia Friends. Dementia Infographics – Number 10, via Flickr.