Ending society's dementia silence

With the rise in numbers of people living longer these figures are predicted to increase to over 1.4 million by 2040, particularly in those over the age of 85.

According to the latest all-party parliamentary group for dementia report, fewer than half of the people with dementia in the UK obtain a formal diagnosis, despite an emphasis on the need for early diagnosis and treatment.

Consequently, individuals living with dementia and their carers are denied the opportunity to effectively manage the condition, gain access to appropriate treatments or plan future care.

Healthcare practitioners across eight European countries have cited stigma and ageism as reasons for delays in early recognition of dementia, due to the belief that little could be done for the patients. Stigma and ageism are highlighted by organisations submitting evidence to the parliamantary group as barriers to early diagnosis.

The term “ageism” describes the concept of systematic prejudice and bias against older people. The prevailing social stereotype of ageing is that people become weak and frail rather than gain wisdom and maturity. The reality of age inequities in access to healthcare resources was highlighted in the national service framework for older people, where the first standard identified was “rooting out age discrimination”.

Stigmatising attitudes to ageing and dementia can undermine older people and lead them to entertain lower expectations of themselves.

The World Health Organisation and World Psychiatric Association recognise that stigma and age discrimination are attached to older people with mental disorders and are calling for countries to take a strategic approach to reducing stigma by implementing public educational programmes.

Erving Goffman states that people who carry some form of stigma have a spoiled identity and lack acceptance by others. He described three types of stigma: bodily abominations (missing limbs, ageing body); moral incapacities (bad behaviours or thoughts) and tribal stigma, which occurs when a person is affiliated with other stigmatised groups. Each type can occur singly or simultaneously with others.

It has been suggested that people living with dementia are one of the most excluded groups in society due to “double jeopardy” - being old (bodily abominations) and having a cognitive impairment (moral incapacities).

The National Dementia Strategy for England recognised that dementia continues to be the subject of shame and stigmatism due to public lack of awareness. Terms such as “memory problems” or “confusion” are commonly used, rather than “dementia”. John Killick and Kate Allan suggest our own deep-rooted fears of illness, deterioration and death deter us from confronting the reality of the experience of people who have conditions like dementia.

The prime minister’s challenge on dementia has pledged to launch a national campaign to raise awareness of dementia this autumn. Any campaign must bring together health and social care professionals with people living with dementia, their carers and supporters to increase public awareness.

It is vital to demonstrate that it is possible to live well with dementia. The hope is that such a sustained constructive focus will help improve services and positively change societal attitudes, encouraging those with concerns to come forward for advice.

Pam Turpin is a senior research analyst with Arup.

For more, see www.hsj.co.uk/future-proofing