Ending the stigma about dementia...CARDI blog
- Republic of Ireland
CARDI recently featured a blog entitled We need to talk about dementia.... Deirdre Shanagher from The Irish Hospice Foundation has written this reponse as a guest blog:
“We need to talk about dementia…” (13 March 2014) raises very relevant points with regard to the current situation of dementia care in Ireland. The fear factor and stigma associated with dementia is often amplified when end of life issues linked to the illness are raised. Stephanie Booth, at a seminar in Limerick on March 26 2014 launched the Irish Hospice Foundation's “Changing Minds” Programme that is aimed at promoting excellence in end of life care for people with dementia.
Speaking out and changing minds
As pointed out in the blog there is a “lack of debate and discussion about dementia”. With the Changing Minds programme, the Irish Hospice Foundation will be co-ordinating a number of initiatives across the country aimed at raising the profile and addressing the end of life care needs of people with dementia. This is an example of one initiative that will contribute to and generate public and professional discourse that is starting to emerge about dementia. “Speaking out” is mentioned in the article and the gravitas that this brings is of paramount importance in raising the profile of dementia. In Limerick, Stephanie Booth had the room on their feet and some in tears after she spoke from the carer’s perspective and gave an account of her journey to date with dementia as she cares for her husband and well known actor Tony Booth.
The 'new normal'
The need to make dementia the new “normal” was raised by Stephanie and she described the social shame and embarrassment that is too often linked to the illness. She appealed to healthcare workers in the audience to discuss and listen to family carers and spoke about the right that we all have to die well with dignity and respect. Stephanie noted the importance of discussing death and care preferences early in the dementia illness rather than later when the person with dementia is unable to make choices about their care in an effort to give people the exit from life that they deserve.
'Walk the walk'
Stephanie also challenged global leaders to “walk the walk” after their public declaration on the need for increased research on dementia at the recent G8 meeting. Such high profile declarations are required to generate the public discourse and contribute to the ever-growing conversation about dementia. The seminar in Limerick was the first of three to be arranged by the Irish Hospice Foundation this year. The locations for the other seminars are the north east and south east. For more information see our website or contact a member of the development team: Deirdre.firstname.lastname@example.org