An Aging Society #6: Overcoming the Stigma of Dementia
What Can Canadians Do to Eliminate Stigmatization?
Canada has been responding to the urgent call for action to help minimize the impact of dementia-related diseases in the last decade as outlined by the 2010 Rising Tide Report (8) commissioned by the Alzheimer Society of Canada. Much more work is required as the number of people living with dementia will double over this 30-year period. The Canadian families, our health care system, and the economy will see a crippling effect if we do nothing (8). Canada is committed to address dementia. In June 2017, Canada passed the National Strategy for Alzheimer’s Disease and Other Dementias Act.
Canada published its first National Dementia Strategy (2) that places people living with dementia (PwD) and their families and friends who provide care to them at the center. The strategy covers three broad national objectives (2):
prevent dementia - better understand how dementia can be prevented and ensuring more Canadians are aware of mitigating factors to reduce the risk of developing dementia or delay its onset;
advance therapies and find a cure - allocate resources in advancing dementia research to develop effective therapies and possibly finding a cure;
improve the quality of life of people living with dementia and their caregivers - eliminate stigma and support PwD and their caregivers by improving access to services including early diagnosis, and maximizing their quality of life.
Stigma and discrimination exist within the health system and in the community. Stigma and discrimination can create obstacles to diagnosis, treatment, and care which can greatly impact the quality of life (2). This post focuses on the most pressing need, that is to overcome the stigma associated with dementia.
What is Stigma?
Stigma often refers to a negative stereotype influenced by public attitudes, misconceptions, and fear (2). Due to the negative perceptions, people with dementia are frequently being looked down upon, excluded, and discriminated against (1). Such perceptions not only carry devastating effects on the individual, their families, and the healthcare profession are also being affected. As Harper and colleagues further describe stigma into categories including public, personal, and courtesy (4):
Public stigma refers to how the general public holds stereotypical attitudes and beliefs toward people with mental health challenges or their family members.
Personal stigma refers to the case when people at the receiving end, internalize the public attitude and result in negative experience as a result.
Courtesy stigma refers to the stigma by association that involves emotions and behaviors toward family and health care professionals interacting with the person with dementia.
See References at the end of this post below.
How can we reduce stigma in dementia in society?
The good news is that we can confront the challenge of reducing stigma in dementia through many fronts. Here are some key approaches suggested by Harpers et al. (4):
Through public messaging campaigns to counter negative ideas and stereotypes about persons with dementia spread through mass media. One example is Typical Day, a photography project developed and maintained by clinicians and scholars at the University of Pennsylvania (9) to raise awareness on dementia.
Focus on the delivery of person-centered clinical care. Foster respect through direct discussions on challenges and issues facing an individual patient and his/her caregivers. Avoid falling into the broad-based stereotypes.
Through education and building community. Share accurate resources about what are the lived experiences of persons with dementia. Encourage outreach that highlights the needs and strengths of the dementia community.
Through advocacy for public policy and actions. To advance policy change that supports person-centered clinical practices. Implement best practice interventions to address societal inequities of persons with dementia and their informal caregivers.
Though the above approaches sound promising, with rapid population aging and projected increase in persons with dementia on a global scale, there are gaps that need to be addressed in order to eliminate stigma. First, further research to better identify and measure stigma, second, tests the new approaches proposed to reduce stigmatizing attitudes to inform practice (5).
Final Thought
People with dementia deserve respectful, ethical care that focuses on personhood and relational aspects of care. Reducing stigma is needed in policy, research, information, education, and service design/delivery since dementia can impact all of us as we grow older (1).
Have you or your loved ones experience the stigma of dementia or other mental illness?
What do you think is most challenging in eliminating stigma in dementia?
References:
(1) Benbow, S. M., & Jolley, D. (2012). Dementia: Stigma and its effects. Neurodegenerative Disease Management, 2(2), 165-172. doi:10.2217/nmt.12.7
(2) Canada (2019). A Dementia Strategy for Canada: Together We Aspire. Retrieved November 28, 2020, from https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html
(3) Canadian Institute for Health Information (CIHI). Dementia in home and community care. (n.d.). Retrieved November 29, 2020, from https://www.cihi.ca/en/dementia-in-canada/dementia-care-across-the-health-system/dementia-in-home-and-community-care
(4) Harper, L., Dobbs, B. M., Stites, S. D., Sajatovic, M., Buckwalter, K. C., & Burgener, S. C. (2019). Stigma in dementia: It's time to talk about it: There's much you can do to address stigmatizing attitudes, beliefs, and behaviors. Current Psychiatry, 18(7), 16+. https://link.gale.com/apps/doc/A595143783/AONE?u=queensulaw&sid=AONE&xid=34502e2c
(5) Herrmann, L. K., Udelson, N., Kanetsky, C., Liu, H., Cassidy, K., Welter, E., & Sajatovic, M. (2019). A new curriculum to address dementia-related stigma: Preliminary experience with Alzheimer’s Association staff. Dementia, 18(7–8), 2609–2619. https://doi.org/10.1177/1471301217752706
(6) Kontos, P., Grigorovich, A., Dupuis, S., Jonas-Simpson, C., Mitchell, G., & Gray, J. (2018). Raising the curtain on stigma associated with dementia: Fostering a new cultural imaginary for a more inclusive society. Critical Public Health, 30(1), 91-102. doi:10.1080/09581596.2018.1508822
(7) Lethin, C., Renom-Guitera, A., Zwakhalen, S., Soto-Martin, M., Saks, K., Zabalegui, A., Challis, D.J., Nilsson, C., Karlsson, S. (2017). Psychological Well-being over time among informal caregivers caring for Persons with Dementia Living at Home. Aging And Mental Health; 21, (11), 1138-1146
(8) Rising Tide: The Impact of Dementia on Canadian Society. (2010). Retrieved November 27, 2020, from https://www.champlainhealthline.ca/healthlibrary_docs/RisingTide.pdf
(9) University of Pennsylvania. (2020). Typical Day. Retrieved November 30, 2020, from http://www.mytypicalday.org/
