Exploring Perceptions of Dementia in Northern Ireland

Background: Improving public knowledge and understanding about dementia has been identified as a priority area by people living with the condition, researchers, educators and policymakers for a number of years. Societies that have a better understanding of the condition are more likely to enable people living with dementia to enjoy a better quality of life. The aim of this study was to explore current public perceptions of dementia from people living with the condition in Northern Ireland. Methods: Four focus group interviews were conducted with a total of 20 people living with a dementia across three Northern Irish Counties in June 2019. These interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Ethical approval was obtained for this study prior to data collection. Findings: Following thematic analysis, three themes emerged in relation to barriers and facilitators to living well with dementia. These were: ‘Emphasis on Disability NOT Capability’, which highlighted societal misconceptions about the activities and modes of life which people with dementia could or could not do; ‘Normalise Dementia – We Don’t Want a Fool’s Pardon’, which focused on how society could encourage people living with the condition to enjoy greater independence, and ‘Dementia isn’t a Death Sentence’, which considered how professionals, family members and friends treated the person after diagnosis. Conclusions: Public perception and knowledge about dementia are improving but people living with the condition still face significant challenges in their daily lives. Participants in this study acknowledged improvements in societal knowledge and perception about dementia, however they also acknowledged there is still an urgent need for continued improvement.


Introduction
More than 850,000 people live with dementia in the United Kingdom and this number is expected to surpass one million in the next five years 1 . This increasing prevalence has led to a greater public awareness of the condition and an increasing number of dementia-friendly communities 2 . These communities have the goal of reducing stigma, promoting greater public understanding of dementia and ensuring communities actively facilitate people with dementia to make decisions about their lives 3 . While these improvements in public perception about dementia have supported people with the condition to live well in their community, people with the condition may still face challenges 4 5 6 7 .
The challenges people with dementia may face can manifest in a variety of ways. Arguably the biggest misconception the public have about dementia is that the disease is a normal part of the ageing process 8 . This misconception can prohibit timely diagnosis of dementia and have implications for commencement of treatment 9 . Another challenge commonly reported by people living with dementia is the language used by the media and the public in describing dementia 10 . Offensive or labelling language, such as referring to people living with a dementia as a 'sufferer' or 'demented' perpetuates the stigma associated with the disease and can disempower people living with dementia and their ability to maintain independence 11 12 13 . There have been several international research studies which have sought to explore public perceptions of dementia and all have concluded that interventions to improve public knowledge about dementia are a priority 14 15 16 17 18 . Without adequate knowledge of the condition, people living with dementia are likely to experience disempowerment and family carers are likely to use existing lay knowledge to guide their care planning.
The aim of this paper is to explore public perceptions of dementia from people living with dementia in Northern Ireland. The reported study findings have been used to inform another project being led by the authors; the codevelopment of a digital game to improve public perception of dementia: www.dementiagame.com

Design
An interpretive qualitative approach was used based on the belief that social reality is shaped by both human experience and social context 19 . Therefore, this study sought to elicit how people living with dementia understood the public perception of dementia within their everyday experience. Data were collected using focus groups enabling people living with dementia to describe their everyday experience as well as commenting on the experience of others. Using multiple focus groups has the potential for researchers to identify the similarities and differences of experience within and across groups 20 .

Ethical Considerations and Recruitment
This study received ethical approval by Queen's University Belfast, School of Nursing and Midwifery Research Ethics Committee in April 2019 (Reference: CBrownWilson 03.19 M2.V1). Written consent was obtained from people with dementia who participated in the study. Recruitment was facilitated by the charity Dementia NI, a voluntary membership organisation led by individuals living with dementia. Consent processes were guided by Dewing 21 and re-checked at the commencement and conclusion of each focus-group. An empowerment officer from Dementia NI, who knew and regularly met with the participants, was present during all periods of data collection to identify if people living with dementia were showing signs of ill being that could imply consent was being withdrawn during the focus group.

Sample
All participants met the inclusion criteria which included the following: living with a formal diagnosis of dementia and having the cognitive ability to actively participate in discussions about the facilitators and barriers to living well with dementia in their local communities.

Data Collection
A total of 20 people living with dementia participated in four focus group interviews. These took place throughout June 2019 at four different venues in Northern Ireland, representing both rural and urban communities. Locations were selected by Dementia NI. The duration of focus-group interviews was between 35 minutes and 75 minutes. An interview guide was not used to facilitate focus-group discussions. An unstructured interview was preferable to enable people living with dementia to identify their own perspectives rather than being guided by the interviewer. For example, each empowerment group were asked the following open ended questions: 'Tell us about a positive everyday experience when you are out and about; what made this experience positive', followed by 'Tell us about a not so positive experience you might have had; what made this experience not so positive'. This approach to questioning allowed the participants to discuss the facilitators and barriers to living well with dementia in an informal conversational manner. A range of prompts were used when required such as 'Did this make you feel rushed? Or 'Did this give you enough time?

Data Analysis
Data were transcribed verbatim and analysed using thematic analysis based on Braun and Clark's 22 six stage framework: familiarisation with data, generating initial codes, searching for themes, reviewing themes, defining themes and producing the report. Two members of the team (blinded for review) read and re-read the data independently to generate initial codes. Once the initial codes were agreed, these were formed into themes by the same members and reviewed by a third member of the team. The codes and themes were reviewed by members of the Dementia NI empowerment groups who contributed to defining and finalising the themes.  Table One Coding Example

Trustworthiness
To improve the trustworthiness of research data the four criteria of credibility, transferability, dependability and confirmability were followed 23 . Participants were provided with an opportunity to review the raw and themed data. Comprehensive record-keeping was undertaken and retained throughout the research process. Regular team meetings ensured an appropriate audit trail was followed and reflexivity was addressed using a reflective diary of emerging themes that was updated after each episode of data collection. In addition, independent thematic analysis by all team members, discussed at team meetings, reinforced the robustness of the thematic interpretation of the data.

Results
Following thematic analysis, three themes emerged in relation to barriers and facilitators to living well with dementia. These were: 'Emphasis on Disability NOT Capability', 'Normalise Dementia -We Don't Want a Fool's Pardon' and 'Dementia isn't a Death Sentence'.

Theme One: "Often the emphasis is on Disability NOT Capability"
Throughout the focus group interviews, it was highlighted that people living with dementia appeared to lose a significant amount of their independence once they were formally diagnosed. The participants collectively felt that they were encouraged to rely on their family and friends to do everyday tasks and make decisions, rather than maintain their independence first. People with dementia discussed the importance of decision-making after diagnosis with one participant stating the following:

'I make my own decisions, if I want something, I get it and if I don't…well I won't. It's my decision.' FG1P2
During the focus groups, it was evident that every participant felt strongly about maintaining their independence. The participants would emphasise that, as a person, they hadn't changed at all. Participants also articulated their capability in relation to normal activities, for example shopping, money management, driving, living alone and socialising with friends. An example of this was highlighted by one lady who had been living with dementia for more than four years:

'I am still quite capable of looking after myself and my bank account. I can get up in the morning. I can shower, I can dress myself, and I can go out to the shops, meet a friend for coffee… I am quite capable of looking after myself'. FG3P3
While participants provided lots of examples of their capability, they conveyed a sense of frustration with wider society who they felt often had misconceptions about disabilities perceived to be associated with dementia. All participants were aware that their dementia would inevitability lead to cognitive decline and challenges with maintaining independence, however there was a strong feeling that societal focus is often not about independence. One of the main elements discussed was a person's ability to drive post-diagnosis. While participants understood the health and safety implications of driving with dementia, many felt dependent on family or friends while they awaited a driving retest to examine their capability which often could take considerable time. This impact prevented many people from carrying on with their everyday life.
Another aspect discussed within these groups was the capability of performing the task of shopping and dealing with money. In terms of shopping, the majority of people living with dementia stated that they often had to shop with a partner/family or friend due to concerns about confusion, anxiety or getting lost during busier times. One key challenge which led people with dementia to feel more dependent on family or friends related to the frequently changing location of items in shops.

'If I went into a shop to get my groceries, were you know which isle to go to get your stuff and … even in 'Home Bargains' [Shop] when you go back into it, they've moved the stuff all around' FG4P7
'Just when you're used to a thing, the next week it's all moved around' FG1P5 One local intervention, which participants thought was extremely useful, was the JAM card (https://jamcard.org/). The JAM acronym means 'just a minute' and the laminated card has been designed to support people with dementia in telling others that they need 'Just a Minute' in a discrete manner. People throughout the four focusgroup interviews expressed how the JAM card made life easier, particularly when paying for items at a shop, using public transport or becoming lost in a familiar place.
'The JAM card would be used when you're trying to count out your money out in a shop…and you just show them [the shop keeper] your pass and then they would say 'oh hold on yes' and they will give you a bit of time to get yourself organised'. FG3P1 The JAM card was a tangible example how society could enable people living with dementia to be independent through focusing on their capability, not their disability. People who participated in the focus-groups also stated that people's attitude was a major facilitator in supporting independence.

Theme Two: "Normalise Dementia -we don't want a Fool's Pardon!"
One significant barrier to 'living well' with dementia was society's interpretation of what dementia is and how it affects people. Focus group participants wanted dementia to be normalised and viewed as an illness, much like heart failure or cancer. These people living with dementia also wanted society to be aware of the symptoms of dementia, while working with them to make their life more manageable. One aspect which people with dementia found particularly distressing was the potential of being labelled as a 'fool'.
While the task of normalising dementia often rested on the individuals of each person's local community, participants collectively asserted that the media had a huge part to play in positively influencing or informing the views of society. Multiple participants spoke of the positive portrayal of dementia in a recent UK television documentary. The documentary, entitled 'our dementia choir' followed the journey of people living with dementia who formed a choir.

'I thought it was fantastic! It was nice to see just how they [people] were reacting, and I mean they [people with dementia] were just normal, you know?' It was very positive…It's not something you need to hide'. FG4P1
People with dementia also discussed the positivity of recent local public health campaigns that had promoted awareness about the condition. In Northern Ireland, the 'Still Me' campaign was a media campaign produced by the Public Health Agency to raise awareness of the signs of dementia and to reduce stigma about the condition. People living with dementia felt a sense of empowerment with the campaign as stated below:

'It [the campaign] was letting more people know, don't be scared, if you've got dementia don't be scared.' FG2P4
While participants were keen to describe the positive contributions that the media could make to improving societal awareness of dementia, many also highlighted the negative media portrayals. They felt this exacerbated stigma associated with dementia and disempowered participants. Participants consistently noted obstructive language used, in particular the use of labels such as 'sufferer', 'demented', 'crazy', 'not-all-there' and 'childlike' were extremely upsetting.
It was acknowledged that the media had a key role in normalising dementia. Focus-group participants also pointed to local employers as another key group that could do much more to normalise dementia. Several participants in the focus-group stated that the worst thing about being diagnosed with dementia was being forced by their employers to give-up their work.

'Losing your job? That's the biggest thing, that was a really REALLY hard thing to have happen to you…losing work was like losing a limb. You've now lost everything'. FG4P4
Many participants felt that their formal diagnosis of dementia did not immediately change their level of function and often felt surprised when asked to give up work. They conveyed a sense of abandonment and confusion but strongly concluded that having the right to employment, or modification of one's work role, was a pre-requisite for the normalisation of dementia in society. One person with dementia provided the following advice regarding employment: 'Learn about dementia to start with…that is what I would say and see what causes it and then make a decision as to why you should employ someone or not. Meet the person and actually see what stage of the dementia they are at' FG2P2 Participants agreed that to normalise dementia the general public needed to see that people living with the condition can enjoy life through work and activity. The participants did acknowledge that the symptoms of dementia were often invisible in the early stages and independent living would become more difficult in the later stages of their journey. While public support was always advantageous, participants unanimously agreed that never wanted to receive a 'fool's pardon' because they lived with dementia.

Theme Three: "Dementia isn't a death sentence"
The final theme that emerged from the focus-group data was around healthcare professional and family member treatment of people living with dementia post-diagnosis. The participants across all focus-groups expressed their surprise and dissatisfaction about how healthcare professionals' treatment of people with dementia often lacked understanding or empathy. The participants collectively felt that healthcare professionals perceived dementia as a death sentence.

'They [healthcare professionals] really ought to know better, right? I mean…my GP [General Practitioner] has been great, but the people I visit at the memory clinics…well, I am just a number. The information is all about future planning, worsening symptoms and what have you. What I really want to talk about is how I can live life to the fullest!' FG4P1
These sentiments were echoed by a number of participants. Collectively, there appeared to be a professional focus on symptoms of dementia and a consistent reinforcement that dementia is a progressive incurable condition. One participant stated that she was advised by healthcare professionals that she should begin to put an advance care plan in place, a technique that is recommended by a number of clinical guidelines.

'I mean for God's Sake…I had only just been diagnosed with dementia and they were talking about Power of Attorney this and write a Will that…I was so overwhelmed and I was just sat there thinking -how long have I got left [to live]? It took me a few months myself to realise, actually dementia isn't a death sentence and there is plenty of fun still to be had!' FG1P3
There were some positive accounts of healthcare professional interactions with participants but portrayals of their input were often negative. Although the important role their family members and friends played in facilitating and enabling them to live well was widely acknowledged, at times many people with dementia perceived their family members to be, like healthcare professionals, looking too far ahead into the future. One example of this comes from a participant who, after being diagnosed, was taken by her family to a nursing home to have a look around.
'Visiting the home…kind of left me a bit stunned. I'm not there yet, my head was shouting at them but I couldn't say anything. I know they are trying to help me and wrap me in cotton wool to protect me because they are afraid…but I am ok. I can still go out to the pub and have a drink and a dance. I don't particularly want to live in a place with people who I don't know -I don't need care yet!' The role of the family member and healthcare professional was important to people living with dementia. These individuals could support people to overcome challenges in society or could behave in a way which inadvertently perpetuates societal stigma of dementia.

Discussion
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 employment 24 25 26 . Other participants spoke about their lives had been placed on hold as they their abilities to drive were being reviewed 27 . 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 topic 2 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 communities 32 . In the UK and Northern Ireland, there are more than 200 dementia friendly communities 33 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 transport 33 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 participated 35 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 care 18 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 Nussbaum 40 , 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 al 41 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.

Strengths And Limitations
The strength of this paper was that it engaged people living well with dementia offering them a voice to describe the public perception based on their own experience. Whilst this paper has illuminated public perceptions of dementia from people living with the condition across Northern Ireland, it might not be reflective of the views of people living with dementia in other parts of the UK. Whilst authors made every attempt to engage people with dementia as widely as possible across the region, the sample was only drawn from people attending Dementia NI empowerment groups.

Conclusion
Public perception and knowledge about dementia are improving but people living with the condition still face significant challenges in their daily lives. There is substantial evidence to suggest that local communities can facilitate people with dementia to live well with their condition. On the contrary, the converse is also equally true. Improving how people think about dementia has been a priority for many years, however despite notable improvements there are still many people living with dementia that face significant barriers to living well in their local communities.

Consent for publication
Not applicable