Dementia and human rights, by Professor Peter Mittler

DAI’s Human Rights Ambassador Professor Peter Mittler CBE wrote a guest blog for Independent Living UK recently.

The following is a portion of this important article “Dementia and human rights”.

Dementia diagnosis often leads to exclusion

People with dementia have ‘lived independently and been included in the community’ all their lives, but they encounter deep-rooted and systemic obstacles that prevent them from continuing to do so following diagnosis.

Exclusion from the community frequently begins with the first disclosure of a diagnosis of dementia.

Kate Swaffer, Chair and CEO of DAI, uses the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her. Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning. This can be particularly traumatic for people with Younger Onset Dementia in mid-career and with responsibilities for young children and elderly parents.

Social isolation and stigma

Many people with dementia have described the loneliness and social isolation which they experience when friends and family members stop visiting and neighbours cross the street to avoid meeting them. Their isolation is increased by fear of failure and humiliation in going out.

Dementia has now replaced cancer as the illness most feared by the general public and is the reason why many people hesitate to seek help if they are worried about their memory or cognitive functioning. The stigma surrounding dementia is fuelled not only by the media but by politicians and professionals who refer to dementia as a ‘time bomb’ and commit to a ‘world without dementia’ within a generation.”

With is permission, we have highlighted it here; please go to their website to read it in full.