The Stigma of Dementia
Dementia is a chronic and debilitating neurodegenerative disease. It is characterized by a decline in multiple cognitive abilities that significantly interferes with an individual’s functioning; both physical and mental, making dementia a very misunderstood disease. Approximately 50 million people are affected by dementia worldwide and there are more than 4 million people in India who are formally diagnosed.
Though by definition, dementia is a neurological condition but it is perceived by many as a ‘mental illness’ because of the accompanying behavioural and psychiatric symptoms (BPSD). It is not uncommon for a person with dementia (PwD) to be extremely suspicious (refusing to take food for fear of it being poisoned), exhibit poor social skills (start undressing in public), be disoriented (insisting on stepping out at 2am) or act out on hallucinations (listening to and reacting to voices).
Only until two decades ago, the general perception was that dementia is a normal part of ageing preventing people from seeking professional care- thus leading to an aggravation of symptoms. Add to that colloquial usage of phrases like ‘he was behaving like a demented person’ further reinforces that we are referring to somone who is not ‘normal’. Dementia- related stigma has emotional, behavioural and social implications. It leads to significant negative effects on the health and well-being of a PwD as well as for their caregivers.
When someone is diagnosed with dementia, many of them start to perceive ‘self-stigma’ : a PwD experiences negative beliefs and stereotypes related to the disease. They feel stigmatised by not being treated the same way as before, and are concerned that their thoughts and opinions will be discounted and dismissed.
Due to lack of understanding of the disease, there is a change in the behaviour of loved ones, though they may have good intentions. Their children are confused and often uncomfortable sharing the diagnosis publicly. Many do not know how to interact with their parent anymore, while continuing to expect seeing their parent as an authority figure. This also leads to children treating their elderly parent differently, start using patronising behaviour, and treating them ‘like a child’.
As people with dementia develop cognitive impairment and lose their independence, social stigmatisation leads to their social isolation. Their family members may restrict taking them out, friends may stop coming, or stop inviting them to social events (not knowing that continuing social engagements can do wonders in maintaining quality of life). In a situation like this, it is easy to feel their status within the society has reduced as a result of being associatedwiththedisease,leading tosocialwithdrawalandformanydepression.
Due to the stigma associated with dementia, instead of concentrating on the remaining strengths and ability, to enjoy activities and interactions, the focus, unfortunately, tends to be on the ways in which the person is compromised.
Family members also deal with the social stigma themselves, which manifests itself as embarrassment and anxiety and caregiver burnout. At times, family members are embarrassed by some symptoms of dementia such as agitation, unpredictable and unmanageable behaviour, incontinence, disheveled and inappropriate clothing or inability to recognise their own relatives. This awkwardness is often transferred to the society at large and neighbours and friends hesitate to interact like before.
Dementia-related stigma has been identified as one of the most important factors contributing to the avoidance of help-seeking behaviors and delay in the diagnosis. To increase the quality of life of the person with dementia, it is important to increase awareness, provide factual information, use appropriate language, and increase affirming, inclusive attitudes. Mass media also adds to stereotyping by unknowingly promoting ageism, gerontophobia by only showing the negative aspect of the disease condition.
For overall dementia management, it is important for the caregivers to seek professional advice to understand the type of dementia, stage of the disease, and the care plan for the person- whether it is care at home, or care in an assisted elder care facility. The society at large needs to come out in the open, share experiences, build campaigns and strong messaging on social media platforms aiming to drive a change through public awareness and policy.
