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.’
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 had not 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’.
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 inevitably 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, most people living with dementia stated that they often had to shop with a partner/family or friend due to their own 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’
‘Just when you’re used to a thing, the next week it’s all moved around’
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 focus-group 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’.
‘The JAM Card alone has helped me. It is a little comforter that I don’t always need, but if things are racing a bit, I just take the card out [and show this to the service-provider] and that helps put the brakes on’
The JAM card was a tangible example how local communities 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’ was the general public’s interpretation of what dementia is and how they believe it affects people living with the disease. 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 the public to be aware of the symptoms of dementia and use this knowledge to help make their life more manageable. One aspect which people with dementia found particularly distressing was the potential of being labelled as a ‘fool’ due to the symptoms of the disease.
While the task of normalising dementia often rested on key members of each person’s local community, like shop-keepers, law enforcement and health services, participants collectively asserted that the media had a huge part to play in positively influencing or informing the views of the wider public. 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 [the public] 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’.
People with dementia also discussed the positivity of recent local public health campaigns that had promoted awareness about the condition to the public. 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.’
While participants were keen to describe the positive contributions that the media could make to improving public 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 ‘child-like’ were extremely upsetting.
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’.
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. 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’
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 earlier in the disease and independent living would become more difficult in time. 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!’
These sentiments were echoed by several 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 several 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!’
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.