Summary: A new paper shows that many people with dementia lead rich and meaningful lives.
One of the reasons a diagnosis of Alzheimer’s has carried such a stigma is the view that having the disease means losing all your memories, and therefore, losing your “self.”
But the idea of losing your sense of self as you lose your memory doesn’t really fit with much of what I’ve observed. Even as my father lost his memories, he kept his sense of humor, his sense of rhythm and melody, and his sense of right and wrong. Even as he lost track of his exact relationship with friends and family, he kept his sense of love for all of us. I would argue that he never lost his sense of self.
“‘Loss of self’ is baloney,” says Don Moyer, voicing an opinion shared by many with mild to moderate dementia. “There is always a self, and there is always a bridge to that self.” Don and his wife Jenny Knauss, who has Alzheimer’s, run Alzheimer's Spoken Here, a social networking site for people with Alzheimer's and related diseases. They've just finished work on a paper called “Managing disability and enjoying life: How we reframe dementia through personal narratives.” Their co-author is Renee Beard, a geriatric sociologist at the University of Illinois at Chicago.
Based on a survey of people with dementia conducted by Don and Jenny, the paper confirms what those with various forms of memory loss already know: rather than losing their senses of “self,” many have rich and meaningful lives.
The paper lays out Dr. Beard’s analysis of the narratives collected by Don and Jenny. She concludes that people with dementia:
* accommodate dementia into their lives
* see dementia as a beginning rather than as an end
* perform the emotional work of managing their disabilities
* creatively construct meaning, order, and selves
* are - and insist on being seen as - individuals having continuing personal stories.
Don and Jenny are following in the footsteps of several members of the Dementia Advocacy and Support Network International (DASNI) who have long argued against the idea of “loss of sense of self.” Morris Friedell, whose doctors have given him a “working diagnosis” of early Alzheimer’s disease, wrote an excellent essay on this topic called “Is The ‘Loss Of Self’ In Mild To Moderate AD Inevitable?” He wrote this in the year 2000, long before his views became more mainstream.
Don, Jenny and Dr. Beard have submitted their paper to The Journal of Aging Studies for publication. They hope that this more positive view of the lives of people with dementia will provide input for professionals in Alzheimer’s policy development, care, and research.
Note: in an email sent after this post, Dr. Beard said that she sees herself as a vehicle to give voice to people with memory loss. She encourages anyone with memory loss to share their thoughts with her at firstname.lastname@example.org.