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How can people live well with dementia?

Over 800,000 people in the UK are living with dementia. Dementia is an umbrella term for a number of neurodegenerative diseases, each associated with a different set of symptoms, typically affecting older persons. Author Sir Terry Pratchett, who had one form of dementia, eloquently described dementia as an attack on “those facets which makes us who we are”. In this way, dementia can threaten people’s identity and undermine their sense of meaning in life. What determines people’s capacity to cope well with dementia? Why do some people manage to have a positive experience in everyday life while others do not? What is the path to leading a life imbued with meaning in dementia?

There are many approaches to understanding dementia. From a medical perspective, dementia can be viewed in terms of the considerable losses that it entails. Others, however, focus on the capacity of the person with dementia to maximize one’s potential by utilizing personal strengths and resources. Such approaches, also called person-centred approaches, attempt to understand the positive experiences that can be experienced by persons with dementia and enhance their wellbeing. Indeed, persons with dementia describe a variety of positive experiences that contribute to maintaining their sense of self. These include staying actively engaged with life and pursuing pleasure and enjoyment, for example, by maintaining their interest in favourite activities and past occupations. Some persons with dementia note that they have learned to appreciate the love and support they experience in meaningful relationships with close ones and others describe gaining insights about one’s self following the diagnosis. Also, persons with dementia can find value in sharing their knowledge and personal experience with others, for example, by contributing to research. Finally, persons with dementia describe experiencing hope and taking things as they come, one day at a time, with a bit of humour.

While recognising above all that different people with dementia face different challenges and demands and cope as best they can, dementia researchers are interested in identifying any factors that are associated with a positive everyday and long-term experience of dementia. In other words, understanding how people with dementia use the different psychological resources available to them and the different implications of this. For example, to manage their experience of dementia, people can potentially draw on personality traits such as self-esteem and optimism, cognitive abilities such as memory and attention, and the capacity to shape their emotional experiences. Pratchett, for example, used resourcefulness and competence to develop new techniques to keep on writing despite dementia symptoms. Utilizing such psychological resources can potentially have implications for the daily decisions that persons with dementia make and for their overall wellbeing.

Our research team is one part of this large-scale UK project examining how to sustain wellbeing in dementia. In particular, we are working to understand the associations between different psychological factors, engagement with decision-making, and wellbeing in persons with dementia. Our long-term aim is to provide guidance and advice for strategies to sustain wellbeing in the face of the long-term changes that the disease inevitably brings.

We have already received valuable input from many people with dementia in the UK and are continuously looking for people who have been diagnosed with dementia in the last six months and want to have their voice heard.  For interested persons, additional details can be found on this website.