The ‘stigma’, which surrounds dementia in our country, is preventing early diagnosis, care and research into the disease. This fear affects many of those living with the condition, their families, friends, co-workers and caregivers. Dementia is not thought of as a ‘disease’ but as the old descriptions of ‘senility’, which imply a mental illness, something’ less-than’. Something (and someone) to be feared. And hidden.
According data in a report from the UK, ‘people over the age of 55 fear being diagnosed with dementia more than any other condition, and at least 1 in 4 people hide their diagnosis, citing stigma as the reason.’ Fifty percent of doctors won’t even tell their patients that they have dementia.
“Stigma” is defined as ‘the use of negative labels to identify a person with a disability or illness’. Stigma around Alzheimer’s (and all dementias) exists, in part due to the lack of public awareness and understanding of the disease.
I encounter this often as I treat patients all over the San Francisco Bay Area. I hear of a diagnosis of ‘memory problems’, or ‘your brain is just not working well’, or ‘you have had little strokes’. These may be true, but they are not properly diagnosed with ‘dementia’.
So why is it important to fight this ‘stigma’ about this disease?
Because it adversely affects both patients and family. It prevents patients from seeking proper medical treatment when they notice symptoms, which prevents early diagnosis (or any diagnosis) and benefit from available treatments. It prevents planning for the future, developing a support system before the disease progresses. It prevents patients from living the best quality of life possible.
Stigma can show in many ways:
Friends may stop coming by, or stop inviting patients to social events. They may even stop calling.
Family relationships may become strained. Some family members may not want to talk about ‘it’ or believe that the life you had before is now over. They may avoid the loved one altogether. Others in the family may try to ‘help’ too much, treating the loved one like a child or invalid long before that is indicated.
Others (even doctors) may approach your loved one, and discuss their care or situation with a family member standing nearby and ignore the loved one completely, as if they don’t understand the conversation.
These kinds of reactions may keep a loved one from telling family and friends about their diagnosis or prevent seeking help or support.
There are a few things that can be done to overcome the ‘stigma’.
Become educated and educate friends and family about the disease. Be open and direct. Explain what it is, not what they ‘think’ it is.
Stay engaged with your life: continue relationships, participate in the meaningful activities that you have always enjoyed. Exercise, eat nutritionally, and stay active physically, mentally and emotionally. Seek and find support from your family, friends or from a monthly support group. Building a network of support is critical.
Try not to get discouraged. Many people are afraid of the words ‘dementia’ or ‘Alzheimer’s’, and what they think it means. Their denial is not a reflection of you- they just don’t know what to do. Educate them. Let them know that dementia is NOT a disease of normal aging; it is essentially ‘brain failure’. It is a disease as much as osteoporosis or COPD are diseases.
Openly discussing dementia, educating people and, if you share your knowledge, ask them for their support and help as you navigate through the process. They may really surprise you and become your greatest advocate.