Challenging the Stigma of Dementia
By Julie Hayes | 11/15/2023
Dementia is a condition that affects millions of individuals and their families around the world. Yet, despite its prevalence, dementia remains overwhelmed in stigma and misunderstanding. In pop culture, dementia is often used as a punchline, or even an insult against older public figures. In day-to-day life, people who encounter individuals with dementia may become annoyed and frustrated, and try to avoid the situation, even if the individual needs help. The stigma can also affect caregivers: if a loved one with dementia is exhibiting strange or socially inappropriate behavior in public, for example, people may blame the caregiver for not “controlling” their loved one or make the caregiver feel ashamed or embarrassed.
Some of these stigmas may seem harmless in the moment, but have profound consequences, and must be addressed if we are to provide better support and a more empathetic society for those dealing with dementia.
The Deep Roots of Dementia Stigma
Stigmatization of dementia isn't anything new. It has deep historical roots, often associated with fear, ignorance, and misperceptions. Even the term "dementia" itself comes attached with stigma, as the Latin root word “demens” indicates being out of one’s mind or senses. Calling someone “demented” is a common way of implying that you think they’re crazy.
Over the years, dementia has been referred to as senility, madness, or even insanity. In some cultures, it is sometimes blamed on the sufferer’s own shortcomings and choices, or even their fate or karma. These perceptions can be hurtful, isolating, and damaging to those experiencing it, as well as their caregivers.
The Impact on Caregivers
Though stigma against dementia may seem to most obviously target the individuals with dementia themselves, caregivers often bear the brunt of the negativity behind the scenes. Here are some common ways this can happen:
1. Isolation: Caregivers may find themselves isolated from their social circles due to their role. This can happen for several reasons, but the stigma attached to the condition can certainly lead those who feel uncomfortable interacting with someone one with dementia to withdraw from the life of the caregiver. Caregivers may also become isolated if they feel they cannot take their loved one out in public out of fear of the judgements of others.
2. Emotional Toll: Caregivers tend to experience emotional stress with their role, particularly with dementia, where they may feel they are losing a cherished relationship with a parent, spouse, relative or friend due to their loved one’s cognitive decline. Stigma amplifies these feelings, making caregivers hesitant to share their challenges openly, which can lead to mental health issues such as anxiety and depression.
3. Delays in Seeking Help: Due to the fear of judgment, caregivers might delay seeking help when they need it. They may try to cope alone, leading to increased stress and difficulties in providing care.
4. Lack of Understanding from Employers: Many caregivers are actively part of the workforce. The stigma surrounding dementia can make it challenging to communicate their caregiving responsibilities to employers. It's already a national conversation that many employers don't make enough allowances for child caregiving, so the support and understanding are likely to be even more inadequate when the person who needs care is a parent, sibling, or another loved one. This lack of understanding and flexibility can potentially jeopardize a caregiver's employment status.
Challenging the Stigma
Eliminating the stigma associated with dementia is a collective responsibility that involves both individual and societal change. Here are some steps we can take to challenge these stereotypes:
1. Education: By learning more about dementia, its causes, symptoms, and treatments, we can better understand and empathize with those affected and those who care for them. Dementia Friends is a great educational tool to begin the journey of understanding what a person with dementia is going through.
2. Open Conversations: By sharing our experiences, both the good and the bad, we can reduce isolation and promote understanding.
3. Raise Awareness and Encourage Advocacy: Participating in or supporting dementia awareness campaigns can boost the effort to destigmatize dementia through sharing real stories and providing valuable resources. Supporting policies and initiatives that enhance dementia care, research and support systems can also contribute to a more supportive and empathetic environment for dementia care.
4. Serve as a Model of Empathy and Compassion: Approaching individuals living with dementia and their caregivers with empathy and compassion can make a huge impact. Offer a helping hand and a listening ear, and don’t be quick to judge someone who is publicly struggling with their loved one with dementia. If people witness another person’s kindness, it makes them more likely to behave in the same way.
5. Challenge Negative Language: Words matter. Be mindful of the language you use when discussing dementia. Avoid derogatory or stigmatizing terms, and promote respectful and inclusive language. If someone mocks an older person for being “senile” or “crazy” around you, don’t laugh it off—speak out, and maybe that person will be less likely to tell that joke again in the future.
6. Seek Professional Help: If you are a caregiver, don’t let stigma get in the way of talking about dementia with others and getting the help you need. Many organizations and experts are dedicated to assisting caregivers in navigating dementia care, but you need to take the first step in reaching out to them rather than taking on burdens alone.
Dementia can impact anyone, transcending age, gender, and socioeconomic status. By working together to break down the stigmas, we pave the way for a more inclusive and supportive world for those living with dementia and their caregivers.
This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.