Dementia: Debunking the Stigma and Fostering Inclusive Environments for Dementia Patients & Family Caregivers

With an estimated 8 billion people worldwide, the proportion of the older adult population is rapidly increasing. In fact, as of 2020, the Administration on Aging reports that 1 in 6 people in the United States are 65 or above. Considering age is the largest risk factor for many neurological diseases, including those associated with dementia, an influx of cases is expected as time goes on. 

And the data supports just that. Dementia cases are expected to triple from 55 million to roughly 150 million by 2050. To put this into perspective, every 3.2 seconds someone is diagnosed with a dementia-related condition today, with Alzheimer’s disease being the most prevalent. Given this, imagine the sheer number of diagnoses that will emerge in the future. However, it is important to bear in mind that these approximations may be heavily underestimated due to the stigma surrounding the disease itself. 

In fact, according to the Milken Institute, one of the largest issues facing those with dementia and their caregivers is the actual stigma associated with cognitive decline. From being labeled as “outsiders” and “zombies”, to feeling isolated and abandoned by society, a patient's ability to openly discuss their symptoms with others and seek out treatment options is heavily impacted by the implicit, but significant societal stigma towards aging in general. Family caregivers face similar battles through “associative stigma”, oftentimes delaying seeking out treatment and being reluctant to share their loved one’s dementia diagnosis with friends and family, in fear of being shamed. This presents an additional sometimes-unforeseen challenge which makes dealing with the diagnosis and progression all the more difficult.

On a societal level, many problematic, negative beliefs and perceptions surrounding dementia contribute equally as much as individual perspectives in perpetuating damaging stigmas surrounding dementia that prevent those impacted from seeking help and support. This is a critical public health issue, especially because dementia is among the most feared diseases for many. After all, some of the first thoughts that often cross people's minds when thinking about dementia include losing their functioning, their driver’s license, fear of burdening others, moving into a nursing home, and/or others treating them as if they are crazy - all of which underscore imagining a life without autonomy. Part of the reason why dementia is so tough to diagnose, aside from its complex neurological underpinnings, is because of these thoughts.  Individuals exhibiting cognitive impairment may be reluctant to undergo diagnostic testing and risk receiving a positive. While others may shy away from being genetically tested for young onset dementia because they might not want to know if they are at risk for future development, which is also the subject of large ethical debates. Even a subset of those who do get tested though face not getting a diagnosis, as providers will sometimes dismiss symptoms as being associated with “normal” aging.

Further perpetuating the stigma is the belief that there are not enough care options to adequately support cognitive decline, if someone is diagnosed, which presents substantial challenges for families navigating unfolding disease progression. Of course, scientists are very transparent about the fact that very little is known about brain disorders which may present concern. Having said that, even with the limited knowledge we do have, there are still plenty of existing options for patients and their caregivers. Organizations like the Alzheimer’s Association and Alzheimer’s Foundation of America provide many resources ranging anywhere from explaining how to choose the right provider to supplying a helpline where caregivers can get their questions answered immediately. However, with “Alzheimer’s” in the title of many of these organizations, it can oftentimes deter patients with differing disorders and their caregivers from utilizing those same resources, even if they would apply to the situation.

A critical issue faced by family caregivers include the lack of  knowledge and accessibility to the right resources that are individualized to the person with dementia and family caregiver’s specific needs, a problem that the ENRICH Lab is diligently conducting research on to better understand. Additionally, with even more treatment options becoming available such as the recent FDA-approved drug Leqembi, the hope is that more barriers (physical and mental) will be addressed, to ensure patients and caregivers feel comfortable and supported through this tough process. 

Tackling the stigma by conducting rigorous research to increase our knowledge on how dementia works and how to best address the growing, diverse needs of families impacted by the disease will take time. However, educating the public and bringing awareness to this issue can happen now, and following the three key points outlined below will be a step towards doing just that.

1. Increase Public Awareness 

A common misconception that contributes to the stigma is believing that the development of dementia cannot be proactively prevented, when in fact there are well-researched ways to reduce the risk of cognitive decline. Implementing healthy habits into one’s lifestyle can drastically improve brain health, some of which are summarized below:

• Regular exercise

• Getting good quality sleep (ie: consistent bedtime, optimal room temperature)

• Consuming a well-balanced diet (limiting sugar, saturated fats and bad carbohydrates)

• Learning new things (staying active mentally)

• Being connected socially with others

Incorporating these habits into existing educational curriculum about dementia will greatly assist in debunking the myth that the disorder is an inevitable part of aging.

Equally as important is creating a safe space for caregivers and patients to share their experiences and story with others. Hearing from those individuals will help educate the rest of society on the reality of living with dementia, and caring for such patients. This ensures that the advocacy effort is aligned with the issues that this community struggles with. 

2. More Conversation between HealthCare Providers and Patients 

In this day and age, there appears to be a significant disconnect between how providers think dementia patients and the public perceive dementia, versus how they actually perceive it. And from the provider’s perspective, there is actually a very intuitive explanation as to why this is. Out of all the patients a doctor sees, they are more likely to spend a greater amount of time caring for a sicker patient than one that is more healthy. Consequently, because our experiences uniquely shape our perspective on the world, it makes sense that doctors who have grown accustomed to seeing patients at late stages of dementia-associated diseases, will have translated that same lens to view all patients. As a result, patients should aim to hold meaningful conversations with their healthcare providers to ensure that they are on the same page. Through this, doctors will simultaneously gain a better understanding of all the symptoms a patient is dealing with, and therefore be able to make a more definite and accurate diagnosis.

3. Better Integrate People with Dementia + Caregivers into Society

Fear can oftentimes lead us to push away things that matter. Given society’s failure to prioritize including people with dementia and their caregivers, it may be indicative of exactly that: fear of dementia. However, by turning away the people who are greatly in need of assistance, patients and caregivers continue to struggle finding information and services on their own, while everyone else remains oblivious to what is happening. The world must become more socially accessible for those with dementia, whether that means opening more Memory Cafés where they can comfortably gather and make new friends, or organizing theatrical performances from companies like the Vamos Theatre’s “Sharing Joy” that is sure to bring a smile to many of their faces, a change is needed. 

Dementia villages are starting to gain traction as well in recent years, for their emphasis on “emancipat[ing] people living with dementia” by providing a relaxed community for them to live in, that looks like any other neighborhood. One main concern is the cost of attendance since the US has a primarily private healthcare system, meaning it would be up to the individual to pay, instead of the government as in other European countries. Nevertheless, dementia villages do appear to be a promising model. Further research should be conducted though, to 1) ensure that people with dementia do not feel further isolated from society by living in the same space and 2) figure out if it’s worth incorporating village communities for other disorders too.

While there is a lot of work to be done to fully destigmatize dementia, and improve the experience for patients and their caregivers, I feel incredibly hopeful. There are many dementia advocacy groups and organizations doing great work, people openly speaking out about their experiences, and labs such as our own working to build and compile resources, all of which bring the voices that matter most to the forefront of change. This is only the beginning…