In the early stages of his dementia, my Father was very fortunate. His veteran buddies made sure that he was never left out of their activities. They made an effort to understand if he needed anything special when they went out together. For many years after his diagnosis, my Father had a very full social life. Unfortunately, this is not always the case. The stigmas surrounding dementia often create barriers that can be extraordinarily difficult to overcome.
Worldwide, 55 million people are living with some sort of dementia. This number is expected to rise to 78 million by 2030 and 139 million by 2050. Dementia is not one specific disease, but is the resulting condition caused by diseases that attack the brain. A person living with dementia can experience memory loss, personality changes, impaired reasoning abilities, and other conditions that worsen over time, making basic functions of life difficult to manage. The most commonly known dementia-causing condition is Alzheimer’s Disease—accounting for roughly half of known cases of dementia. Others that you may have heard of are Lewy Body, Vascular Dementia, Frontotemporal Dementia—to name just a few of these diseases. It is not uncommon for a person to have more than one type of dementia-causing disorders.
One major difficulty that people living with dementia face is stigma. This could be social or institutional stigma. It can even be personal stigma.
Social stigma involves the negative or discriminatory attitudes that others have about dementia. Lack of understanding and empathy can create unwelcoming attitudes toward people living with dementia. These unwelcoming attitudes often result in a person not wishing to leave their home due to fear of being embarrassed or being a burden. Social stigma can impact family and caregivers too, isolating them as they care for their loved one.
Institutional stigma is more systemic, involving policies of organizations that intentionally or unintentionally limit opportunities for people with dementia. Examples include lower funding for dementia research or fewer dementia services relative to other health care.
Personal stigma refers to the negative attitudes, including internalized shame, that people with dementia have about their own condition. Combined with fear, personal stigma can cause a person experiencing symptoms of dementia to avoid getting medical attention, which can ultimately limit treatment options if a diagnosis is delayed.
Fear of the unknown fuels stigma. Dementia challenges societal norms of productivity, independence, and control, making it an uncomfortable topic for many. This discomfort leads to avoidance, perpetuating a cycle of ignorance. Education across the full spectrum of society is one of the best ways to lessen stigma. Several organizations—the Alzheimer’s Association (800-272-3900, alz.org), Lewy Body Dementia Association (800-539-9767, lbda.org), American Brain Foundation (866-770-7570, americanbrainfoundation.org), and more—provide education and support.
SeniorCare’s Age & Dementia Friendly Connections program hosts “Dementia Friends” workshops. These free, one-hour workshops introduce participants to dementia, helping them to understand the experience of living with dementia, and ways to support friends and family members living with dementia. Currently, these workshops are available in-person or online and are available to all interested parties. To learn about an upcoming “Dementia Friends” workshop or to schedule a session for your organization, please call 978-281-1750 or email [email protected].
Encouraging self-advocacy among individuals with dementia can help challenge stigma. Peer support groups, caregiver networks, and public-facing campaigns that showcase the experiences of those affected can foster a more compassionate society.
A person living with dementia is still the amazing and unique individual that they have been for their entire life. It’s our responsibility as a society to learn to support and respect every person—regardless of the medical challenges they face.