Stigma puts dementia sufferers and carers at risk

by Sylvia Thompson-Irish Times Health Supplement-19th September 2006.

The stigma associated with dementia makes caring for people with the illness more difficult, according to a new report to be launched on World Alzheimer Day-Thursday 21st September.

The report, which was commissioned by the Alzheimer Society of Ireland, also points out that both carers and sufferers of dementia can experience social isolation by keeping the reality of dementia secret for fear of stigmatisation.

"The research found that stigma is embedded in the overall experience of dementia, affecting many aspects of people's lives and those close to them", said Louise Nolan, researcher and lecturer at the School of Nursing and Midwifery, Trinity College Dublin, who interviewed people with dementia, their carers and health professionals.

Negative public images of dementia, fear of the condition itself and gaps in health and social services all contribute to this stigma of dementia, according to this first exploratory study of perceptions of stigma and dementia in Ireland.

An estimated 38,000 people in Ireland have dementia. The figures are expected to double by 2026.

Sufferers of dementia experience impaired memory loss, impaired ability to learn and reason, and high levels of stress.

One of the biggest problems with stigma is that it can result in delayed recognition of dementia by family members because symptoms have been minimised or ignored.Similarly, some GPs are slow to diagnose dementia due to the negative public images and fears about how the diagnosis will affect the person and their family.

"People also experience the melting away of friends they have relied on before because of lack of knowledge about how to interact with someone with dementia and the fear around the whole issue" said Ms Nolan.

Maurice O Connell CEO of the Alzheimer Society of Ireland said: "We believe that eductaion and awareness programmes,aimed at the general public, GPs and other health providers, are absolutely vital in helping tackle the prejudice and discrimination that those with dementia and their carers encounter on a daily basis".

The report emphasises the need for the implementation of previous policy documents such as the Action Plan for Dementia(1999). Such documents have promoted the person-centred approach to care of those with dementia and individually tailored packages of flexible services which can change as dementia worsens.

It was also suggested that dementia should be viewed in the context of a social disability rather than simply as a medical condition.