1. The human right of all people living with Alzheimer’s disease and other forms of dementia is to be with people who know their life story including cultural habits and religious faith (Bell & Troxel, 2003). 2. Developing friendships, relationships, and trust with people with dementia is the foundation of person-directed care (Bell & […]
People living with dementia are stigmatized in multiple ways, one of which is treating the activities the rest of us do for pleasure as “therapies.” My view is that we need to ditch the word therapy, and provide activities that engage, activate and enhance life as an integral part of care.
Long-term care residents living with dementia labeled as “aggressive” when they engage in distressing and harmful “resident-to-resident incidents” are in reality expressing real human needs and frustrations that are not being met by understaffed, undertrained, and inadequately supervised direct care staff members.
I have not agreed with the Alzheimer’s Association’s fear-based, stigma-fueling marketing campaign for many years. But exploiting Gene Wilder feels particularly egregious.
All of these can be perceived as ‘deficits’ but they can also be perceived as changes. Using this viewpoint, there is room for the difficulty associated with these changes to be challenging, yet fruitful. Deficits call to be fixed. Changes call to be embraced and understood.
We owe it to ourselves and our communities to stand up and demand that, while we await development of a cure or treatment for Alzheimer’s Disease, resources are to also be spent on figuring out how to live well with dementia.
I think it’s time to challenge a bit of the language being used to advocate for people living with dementia. The negative effects of stigmatizing language are huge, and our language choices are often the places where such stigma starts or ends.
A name can be a powerful thing and I still struggle with knowing the best term for the phenomenon we know as dementia. Can we come up with a name that captures both the challenges and the joys of people experiencing it?