I’M Still ME
By Emily Tan Tan Ong
For people living with a progressive condition for which there is no cure like dementia, a diagnosis of this nature is a devastating and life-changing experience. The impact is even more when it comes to younger people diagnosed with young-onset dementia.
These individuals often found themselves in “forced retirement” upon disclosure because of the societal perception of incapacity, the BPSD stigma, and discrimination against dementia. Given the overwhelming impact of the diagnosis, it is no surprise that everyone with a diagnosis of dementia struggles to find a way to live a meaningful and purposeful life even after the initial impact.
Rebuilding a life with a diagnosis of dementia is indescribably challenging, and it is made even more difficult by the misconceptions, connotations that come with the label of “old people sickness” and a blame discourse that the onset of Vascular Dementia, as a function of individual behavior (Peel, 2014). The process of “recovery a life” (Deegan, 1988) and reinventing is deeply a personal and individualized journey of growing within and moving beyond what has happened. While there is no set formula for this process, and everyone has to find their ways to live a meaningful and purposeful with dementia, society can do its part in lightening the load shouldered by those living and affected by the diagnosis. Myths and misconceptions surrounding dementia influenced the way people think, talk and treat individuals diagnosed and living with the condition.
Many people with dementia still have a strong sense of who they are and what matters in their life. “I’m still me” even though the brain no longer functions like it used to be. Society needs to see and accept deviation from norms as something nothing to be fearful of and discriminated against. Dementia does not change the core of what makes an individual. The values, beliefs, meanings in life, accumulated experience remain with the person.
There is a saying, “Dementia does not rob the dignity of a person” holds.
Often, the changes happened because the brain is changing and thus, it affects how a person experience, perceive and interpret the environment. It is like how age affects the speed of processing, learning and sharpness of thought. With that understanding society becomes more forgiving, accepting and accomodating to elderly. Likewise, the same approach can be applied to those living with dementia. Dementia is not a mental illness but a neurocognitive disorders like ADHD, Autism. It is progressive and terminal degenerative condition that has no cure at present and no such thing as remission like in cancer disease.
As a person living with young-onset dementia, my request to you, readers:
1) Get to know dementia through courses or spend time with people with dementia
2) Understand that living with dementia is like driving through a thick fog. It takes courage and much effort to find the fog lights to make their voice and presence ‘visible’ to other people.
3) Instead of seeing people living with dementia nothing more than Behavioral and Psychological Symptoms of Dementia (BPSD) turn it around and ask yourself, “What is the person trying so hard to say?” When you understand the underlying cause and provide the appropriate accommodation, you will notice that the person with fog lights. We need others to provide the lights and light up the path . We need your support to live positively in the community. We can’t do it alone, just like you can’t use the fog lights to light up your way other than to make yourself visible to others on the road.
Deegan, P. (1988) Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal. 11: 11-19
Peel, E. (2014) The living death of Alzheimer’s versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociology of Health & Illness. 36(6), 885-901