Receiving a dementia diagnosis can present a wide variety of challenges to those with the disease, their friends, family members, and caregivers. According to the Alzheimer’s Association, dementia is the general term used to describe diseases that affect loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. Despite being a common disease for older adults, many people are unfamiliar with the disease and how those with dementia interact with their environment as the disease progresses. This lack of awareness can often lead to social stigma. Stigma is the use of negative labels to identify a person with a disability or an illness. This often impacts how people interact with those with dementia, which can hinder their daily lives and lead to depression, isolation, and discrimination. The stigma around Alzheimer’s disease, the most common form of dementia, is common. In fact, 94 percent of people with a diagnosis have encountered an embarrassing situation as a result of their disease. The stigma around Alzheimer’s disease can actually prevent individuals from seeking medical treatment, receiving an early diagnosis, making plans for the future, developing a support system, and participating in clinical trials.
Living with Dementia Stigma
According to the Alzheimer’s Association, the stigma that often accompanies dementia can present significant obstacles in an individual’s quality of life and relationships with their family members and even the relationship they have with themselves. Friends may find it difficult to believe in their loved one’s diagnosis, finding temptation to withdraw from their lives, which can ultimately lead to feelings of abandonment and isolation. A dementia diagnosis has the ability to change family dynamics. For example, when a matriarch or patriarch of the family receives a diagnosis, family members may not want to talk about the disease because the consequences of the illness are too difficult to accept. Some individuals with dementia may also feel less capable, especially when people approach caregivers and care partners with questions instead of the person living with dementia.
According to an article published by Practical Neurology, stigma generally refers to the way a person’s social status and sense of self can be impacted after being diagnosed with a disease with a negative social connotation or stereotype. However, there are different types of stigmas that impact those with dementia and their family members in different ways:
• Public stigma. Public stigma refers to the general public who may have negative views or beliefs that cause them to discriminate against or patronize those closely associated with the disease. Public stigma can be obvious, such as discriminating against someone with dementia. However, it can also be subtle, such as having the mindset that those with dementia are incapable or inferior.
• Self-stigma. It’s possible for those with dementia to emotionally absorb the negative stereotypes attached to their disease. They may feel ashamed or inferior, which can often lead to feelings of depression, social withdrawal, and low self-esteem.
• Spillover stigma. This type of stigma often affects people closest to those who have been diagnosed with dementia, such as family members or caregivers. These individuals can develop the same emotional consequences as individuals with dementia, such as stress, depression, and withdrawal.
Tips for Overcoming Stigma
If your loved one has recently been diagnosed with Alzheimer’s disease or other forms of dementia and is struggling with the stigma attached to the disease, there are easy ways to help. You may consider implementing these tips provided by the Alzheimer Society into your own life or sharing them with other family members and friends to help combat the stigma against dementia:
• Learn the facts. Understanding how dementia works and what to expect can lessen our fears surrounding the disease. In addition, it’s important to talk about the disease with your loved ones. Once you’ve learned more about dementia, it’s a good idea to share the facts with your friends, too.
• Adapt communication styles. Many people often assume that those with dementia are unable or unwilling to speak for themselves. However, this couldn’t be more untrue. Those with dementia are able to express themselves in different ways. If an individual immediately asks you to speak on behalf of your loved one, try reframing the question if necessary and encourage your loved one to respond for themselves.
• Be a friend. Those with dementia are at great risk of feeling isolated, especially after a diagnosis. You may consider establishing consistent times to do an activity, run an errand, or try something new with your loved one. In addition, it can be helpful to think about the new ways you can connect to your loved one.
• Encourage early diagnosis. It’s common for those with dementia symptoms to be afraid of a diagnosis. However, an early diagnosis allows those with Alzheimer’s to learn about their disease, plan for the future, and build a network of support.
• Provide caregiver support. A dementia diagnosis can be difficult for caregivers, as well as the individual receiving the diagnosis. Showing support for caregivers by learning about dementia, asking questions, and offering help can go a long way.
At Inspīr, we know a dementia diagnosis can feel lonely and confusing. Oceana Memory Care at Inspīr offers you a new way to care for your loved one with dementia—one that provides exceptional care and life enrichment for them and expert guidance and support to you. The result: peace of mind.
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