This photo provided by courtesy of Sony Pictures Classics show Julianne Moore as Alice in the film, "Still Alice." Moore is nominated for an Oscar for her depiction of a woman suffering from early onset Alzheimer’s disease. The 87th annual Academy Awards are presented on Sunday, Feb. 22, 2015, in Los Angeles. (AP Photo/Sony Pictures Classics, Linda Kallerus)

Fighting stigma and increasing dementia awareness are unfinished battles in dementia policy

It would be wrong to consider that it was “job done” with fighting stigma and increasing dementia awareness in English dementia policy, or indeed “mission accomplished”.

Despite the millions of pounds thrown at the Alzheimer’s Society and Public Health England, with clear advantages for the reputation and PR of the Alzheimer’s Society and their supporters, and the marketing agencies to which dementia awareness campaigns were outsourced, we stilll have a remarkably bad idea about whether this extensive public-private partnership changed any perceptions of living with dementia.

We know that newspaper headlines are still littered with the words ‘victim’ and ‘sufferer’ on an almost daily basis.

One of the ironies of the ‘Dementia Friends’ programme is that it has almost become a stock phrase in the highly scripted quasi social movement that ‘you are not supposed to go round making friends with people with dementia’. This is presumably a safeguarding issue, but the idea of making friends in other jurisdictions such as Japanese version was to combat social isolation.

And let’s talk about befriending, shall we? We know that befriending makes a ‘distinctive’ contribution to dementia services and has been specifically recommended in order to  improve quality of life of people with dementia and carers. The befriending relationship in a recent study was indeed “felt to be a personal and human experience, which befrienders felt was deeply meaningful and emotionally powerful. Befrienders’ experiences with their befriendees often prompted learning, including seeing past dementia stereotypes, challenging their personal boundaries, and reflecting on existential matters of love and life.”

To give ‘Dementia Friends’ credit, there has been a huge amount of work constructively done for cultural outreach for culturally diverse groups. It has been suggested that the under-representatio of minority ethnic groups in dementia services may be due to cultural stigma attached to dementia, lack of knowledge of dementia and little awareness of services. We know from research with South Asian and East European groups in the United Kingdom suggests that there is greater cultural stigma attached to a diagnosis of dementia and therefore additional consequences of being diagnosed with dementia for those from minority ethnic backgrounds.

Another burning issue with the mass marketing of a ‘dementia awareness’ programme to millions like ‘Dementia Friends’ is that it is extremely important to get the content right. We know that ‘Dementia Friends’ is virtually silent on risk reduction, and yet public understanding of dementia risk reduction is currently very low. It is thought from recent research that there are several reasons for this:

“firstly, the stigma of dementia and mental illness generally does not foster engagement; secondly, the evidence supporting the case that behavioural or environmental modification will reduce dementia risk on an individual basis has been perceived as too weak to support widespread public information dissemination or other behaviour change mechanisms”.

And whatever progress has actually been made with “Dementia Friends”, it is completely inadequate to meet the training needs of NHS and social care staff. One of the biggest myths which has taken hold, and a big problem in commissioning, is that Dementia Friends is adequate “training” in care homes.

Look at an excellent recent paper by Suzanne Timmons (2016) entitled “Acute hospital dementia care: results from a national audit” [Timmons et al. BMC Geriatrics (2016) 16:113].

One recurrent theme has been the inadequacy of pain relief for people with dementia in acute care, viz:

“Assessment for the presence of pain was poor, with almost one-quarter of patients not being asked about the presence of pain, or receiving any formal assessment. This reflects previous findings that pain is under-assessed in people with dementia. Pain is common in older people with dementia, with up to 45 % experiencing pain. While patients with dementia may not always be capable of communicating pain through self-report, pain can be assessed with tools through caregiver report and direct observation. There are a number of validated tools that assess for indicators of pain, including the Pain Assessment in Advanced Dementia Scale; such tools should be used in cases where verbal communication is not possible.”

And the paper further criticises the quality of dementia awareness amongst professionals, about eight years after the only English dementia strategy co-authored by Prof Sube Banerjee had ever been published. It is worth noting that there has never been any ‘lessons learned’ published from the Department of Health over this  strategy ‘Living well with dementia‘, similar to how there has been no objective review of Dementia Friends.

“The provision of dementia awareness training is poor across hospitals; only two hospitals included it in their induction programmes. None of the 35 hospitals had mandatory training for any staff in dementia awareness, indicating that it is not currently considered a priority. Just over half of hospitals had dementia awareness training available to their nurses and doctors over the previous 12 months. However, almost two-thirds of ward managers reported that staff cover could not be provided for training relating to dementia care, indicating that staffing levels and lack of resources may be a barrier to staff attending any available training. This picture of inadequate dementia training provision for healthcare staff in acute settings has been found elsewhere also. Dementia awareness training should be mandatory for all staff that care for people with dementia in Ireland as it is integral to increasing overall quality of care and reducing staff burden.”

And this matches a troubling finding of the poor dementia awareness in professionals. A 2013–2015 study by Lock and colleagues had concluded that there was variation in dementia awareness provision across health, local authority and third sector
organisations. There were differences in general awareness of dementia care issues, such as knowledge of person-centred approaches, understanding of factors that can influence communication and the impact that diversity, and equality and inclusion can have on an individual’s experience of living with dementia.

It is definitely not ‘mission accomplished’ as certain senior ‘leaders’ in dementia are fully aware.



Lock SH, Moss DHE. Health Education East Midlands: Report of Mapping Core Learning Outcomes for Dementia Awareness across Training Provision across the East Midlands. Nottingham: Health Education East Midlands, 2015.

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