Understanding and fighting the stigma around dementia

What does a patient experience: the other side of the story

Most patients describe it as a lonely condition- both for themselves and their caretaker. It's tough to even survive a social gathering without getting hurt. People start talking to the person who is accompanying them, and that's the worst thing one can do to a dementia patient- avoiding them. 

A survey conducted by Alzheimer's Disease International (ADI) of over 2500 dementia affected people around 54 countries. Nearly one in four respondents with dementia said they had concealed their diagnosis with their family and friends from fear of judgement and stigmatization. 

A similar number said they stopped forming close relationships since the time they found out they were suffering from dementia. The survey also reveals that nearly 40% of people felt they had been avoided or treated differently because of their mental condition. The most important findings from the survey included the marginalization of the person with dementia. Being socially excluded along with the person/ friend/ family who is taking care of them. 

Being overprotective about dementia patients is another demotivating habit of most people. Dementia patients dislike being treated like a child, who cannot take care of themselves. Telling them what to do and when to do it, makes them feel like they are being ‘operated’ like a machine.

Finding a middle ground to overcome the stigma

It’s true that stigmatizing dementia patients unintentionally or intentionally is a major roadblock in humanity’s effort to normalise life for people suffering from dementia or Alzheimers. It’s important to understand that shame and embarrassment are absolutely unnecessary. Our goal as a society should be to open our minds and arms to make it a more inclusive world for the families who are already suffering. It will always be a two-way road- meaning the patients and their caretakers will have to make an equal effort. And there are some tangible solutions to this:

1. Contribute to bringing the change.

As hard as it sounds, it is the ones receiving the end of this stigmatization, who will have to stir the conversation. Especially the family, friends and caretakers- you can exactly see where the gap lies. You can perfectly point out and clarify the myths people have about dementia. It is perhaps the lack of dialogue that lays grounds for awkwardness and non-inclusive behaviour in our society.

2. Being vocal

Most patients; when diagnosed with dementia; keep it to themselves. They refrain from sharing the truth about themselves with their friends and even family. They fear being judged and abandoned, and it is understandable but not the correct approach. You also need to be honest with your spouse, family members, and caretakers if they are being overly protective or bossy. Remember: communicating only bridges the gap, and will help people understand you better. 

3. Joining a community/ support group 

Being a part of a support group instils a ‘sense of belonging’. There are some good Alzheimers support groups where you can seek and even offer help, ask questions, and share your experiences.

Conclusion

Dementia is a mental condition with no definitive cure to it. This leaves the patient with no choice, but to live with it for the rest of their lives. They know their memory will only deteriorate and doing their basic routine work is also going to become a task! The embarrassment and judgement only make them distant from their social and family circle. All they want is to be considered human, and for people to focus on their abilities instead of their disabilities. And as a society. it should be our mission to fight the stigma around dementia and make the world a slightly happier place for dementia patients.