While there has been much positive work acknowledged by participants in this study, there is still significant evidence of public misunderstanding about dementia. This study demonstrates that people living with dementia often experience members of the public who believe they are no longer capable of managing their everyday lives. Whilst dementia does place limitations on their lives, there is still much people with dementia can do and have to offer, a fact that society may ignore. These findings are not unique when considering the global evidence-base. For example, most of the participants identified how they had to give up their job as soon as they received a diagnosis of dementia rather than being offered alternative opportunities within their place of employment24 25 26. Other participants spoke about their lives had been placed on hold as they their abilities to drive were being reviewed27. This contributed to negative public assumptions that people living with dementia were simply unable to do things, which was not always the case. These misunderstandings also acted as significant barriers to living well with the condition. Participants spoke of the difficulty in overcoming these challenges and how public understanding could either act as a facilitator or barrier to living well. These findings are strongly reflective of existing literature on the topic2 3 18 28 29 30 31.
The participants in this study identified the role of the media in promoting the normalisation of dementia and considered how these positive messages might support other areas of society. Indeed, the positive public perception of dementia has the potential to support people with the condition to live well in their local communities32. In the UK and Northern Ireland, there are more than 200 dementia friendly communities33 34. These communities prioritise local community action in relation to several key areas which include the arts, culture, leisure, business, children, young people, faith groups, housing, health and social care and transport33 34. In the UK, the Alzheimer Society’s ‘Dementia Friends’ awareness campaign has been a significant component of educating local public about dementia and over 3 million people have participated35 36.
Healthcare professionals that people with dementia encounter during their journey play a key role in their experience. In the current study, people living with dementia were shocked and distressed by the focus of health care professionals and subsequently by their families on the end stages of the condition. As potential societal role-models, due to their medical knowledge of the condition, many participants expressed disappointment about how these professionals appeared to prioritise medical needs and long-term planning. In this study, participants expressed preference for communication which also focused on facilitating independence and how to live well with their condition. There is a plethora of literature to support these holistic approaches to healthcare professional communication in dementia care18 37 38 39.
Facilitating people to live well with dementia in their local communities requires improvements in public perceptions and meaningful behavioural change. Participants in this study have spoken about the facilitators to living well in their community and the positive impact this had. Participants who were able to continue to do what they were capable of were more likely to experience higher levels of wellbeing. This concept, known as the capabilities approach developed by Nussbaum40, asserts that to live well all people must do and be what they value and lead the type of life they are able to lead. More recently this approach has been adapted to people living with dementia, The Capabilities Model of Dementia Care (CMDC), by Moyle et al41 42. The CMDC provides a useful theoretical underpinning to this research because most positively associated feelings captured in this study related to Moyle et al.41 42 ten central human capabilities. This included feeling valued, living independently, enjoying pleasurable experiences, living in a natural way, experiencing a sense on control and expressing emotion. Communities that focus on providing proactive and supportive environments, which focus on the strengths and capabilities of people with dementia rather than their deficits, are more likely to facilitate opportunities for living well as noted by participants in this study.