Worldwide, 50 million people are living with dementia. This number is expected to rise to 78 million by 2030. 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. 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 disorder.
One major difficulty that people living with dementia face is stigma. This could be social stigma 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 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.
Education across the full spectrum of society is one of the best ways to lessen stigma. Several organizations—the Alzheimer’s Association, Lewy Body Dementia Association, American Brain Foundation, and more—provide education and support.
SeniorCare’s Age & Dementia Friendly Cape Ann 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. The workshops can be held in person or online and are available to individuals and organizations, including participants as young as middle school students. To learn about an upcoming “Dementia Friends” workshop or to schedule a workshop for your group or organization, please call 978-281-1750.
The Alzheimer’s Association holds an annual event “The Longest Night” each December 21 to help raise awareness of Alzheimer’s and other dementias. On the evening of December 21, watch for luminary displays throughout the community—shining lights to diminish the darkness and illuminate a path towards a world without Alzheimer’s and all other dementias. (www.alz.org/manh/events/tld/the-longest-night)
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.