Attitudes to Dementia: Qualitative research

• Vague knowledge about dementia is widespread. It is understood to be the progressive condition of short-term memory loss, loss of capacity for everyday functions, loss of social engagement and inhibition, increasing confusion and loss of control of bodily functions
• The term 'Alzheimer's' is commonly used for both the cause and the condition of dementia
• In principle, people are sympathetic to those with dementia, but in practice they avoid people with dementia and avoid thinking seriously about the topic
• There was evidence of a reasonably powerful tendency for potential carers to be in denial at onset
• Given the tendency of avoidance, in general people have low exposure to people with dementia. As a result, any single contact with a person with dementia is highly impactful and understanding of dementia in general is heavily influenced by the particular symptoms and situation of the person with dementia whom they meet
• Whilst the disease itself is ‘invisible’, the off-putting consequences are visible, i.e. confused behaviour, poor personal hygiene, challenging emotions and the burden of care. Hence awareness of how the disease manifests is far more salient than any commentaries about the disease, which in turn prompts avoidance
• Stigmatisation as such was not evident. Hence it is probable that the stigma noted by people with dementia and carers is not active stigmatisation, but rather the perceived outcome of avoidance

Future messaging

Whilst the strategic direction is still under review, a number of points can be considered when deciding messaging priorities: 

• People do not know much about the medical facts and figures of dementia
• They do however know a good deal about how dementia is manifest in everyday life
• There are as yet no 'killer facts' about dementia, which radically transform attitudes
• Attitudes to dementia are created as much, if not more, by a society-wide reduction in social empowerment as by the specific details of dementia. In other words, avoidance, ignorance and helplessness are all symptoms of the wider tendency towards social disengagement
• Any messages about attitudes to dementia will be successful in the long-term only if they also offer an alternative to this tendency towards social disengagement

Challenges 

• Given the high salience of personal lived experience, it seems likely that evidence from everyday life will keep avoidance as the dominant attitude unless an actionable alternative is offered
• Therefore a campaign must do more than reduce fear or stigma. It must look to replace them with attitudes that are both congruent with the evidence of everyday life and offer better outcomes to members of the public, to people with dementia and to their carers

Recommendations 

• A campaign that overtly acknowledges avoidance and offers a low-risk alternative would help move people away from behaviour perceived as stigmatising and would be congruent with life experiences
• The research indicates that people need encouragement, reassurance and permission to make small gestures of social inclusion
• A campaign route could be tested which overtly notes a few of the non-negotiable difficulties facing people with Alzheimer's disease (such as failing short-term memory, disorientation and difficulty performing familiar tasks) and highlights that additionally 'people avoid you'
• The subsequent call to action could indicate that members of the public can make a difference with small gestures which break down avoidance