Issues in Mental Health Nursing, 34:785–786, 2013 Copyright © 2013 Informa Healthcare USA, Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.3109/01612840.2013.839217
FROM THE EDITOR
The Global Outlook for Dementia Sandra P. Thomas, PhD, RN, FAAN, Editor
Thirty-six million people are living with dementia worldwide, as of 2010, and this number is projected to increase to 66 million by 2030 and a staggering 115 million by 2050. Let those numbers sink in for a moment. Then think along with me about the implications for psychiatric-mental health nursing across the globe. We need to apply our best thinking to the enormity of this problem, termed a “public health priority” in a report by the World Health Organization in 2012 (WHO, 2012). According to Batsch and Mittelman (2012), less than one in four individuals with dementia receive a formal diagnosis, perhaps because stigma mitigates against reporting symptoms. To complicate matters further, symptoms of dementia are perceived variously across the globe, ranging from the (erroneous) belief that such symptoms are inevitable in aging to beliefs in supernatural etiologies. Even when people understand that dementia is a brain disease, afflicted individuals are shunned and stigmatized. One individual living with Alzheimer’s disease wrote: “I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently . . . I kind of see this disease like HIV used to be . . . We did nothing wrong to get the disease . . . and no one should be ashamed of having it” (Batsch & Mittelman, 2012, p. 8). The words of this man were typical of many people who responded to an anonymous online survey conducted by Alzheimer’s Disease International, to which 2500 people, both patients and caregivers, from more than 50 countries, responded. The majority of respondents (75% of persons with dementia and 64% of caregivers) reported that they experienced stigma and societal avoidance (e.g., “People in the retirement community where we live prefer not to sit at a table with us in the dining room;” “Longtime friends and family no longer call or visit. They have stopped all interaction as though the disease is contagious” (Batsch & Mittleman, cited in McFadden & McFadden, 2013, p. 6). Not surprisingly, many people do not seek treatment because they do not want to receive such a devastating diagnosis, nor is their condition recognized and appropriately treated, as shown in the World Alzheimer’s Report of 2011 (Prince, Bryce, & Ferri, 2011). In that report, only 20–50% of dementia cases were recognized and treated by primary care physicians in high-
income countries, and the percentage of treated cases was much lower than that in middle- and low-income countries (e.g., 90% unidentified in India) (Prince, Bryce, & Ferri, 2011). Every country needs a dementia plan. Several activists have pointed to the HIV/AIDS movement as an exemplar of the needed coalition-building, campaigning, and lobbying. Stigma can be reduced by educational interventions, as shown in a randomized controlled trial in Hong Kong (cited in Batsch & Mittelman, 2012). People with dementia are speaking out, such as clinical psychologist Richard Taylor (www.richardtaylorphd.com) and basketball coach Pat Summit (Summit & Jenkins, 2013), and there are online support communities such as the Dementia Advocacy and Support Network International (www.dasinternational.org). In the 2012 World Alzheimer Report, positive initiatives in Peru, Hungary, Australia, China, South Korea, Dominican Republic, Sri Lanka, and UK were highlighted (Batsch & Mittelman, 2012). Psychiatric-mental health nurses can be integral as activists and educators in the dementia education movement, just as they were during the early years of the HIV/AIDS movement and the more recent Recovery movement. Nurses are already involved in the establishment and running of Memory Cafes, which have spread from the Netherlands to the UK and Australia (McFadden & McFadden, 2013). As I searched the literature, perhaps the most inspiring piece I found was a manifesto about quality outcomes for people with dementia, which states: By 2014, all people living with dementia in England should be able to say:
1. I was diagnosed early. 2. Those around me and looking after me are well supported. 3. I feel part of a community and I’m inspired to give something back. 4. I understand, so I make good decisions and provide for future decision-making. 5. I am treated with dignity and respect. 6. I can enjoy life. 7. I get the treatment and support which are best for my dementia, and my life.
785
786
FROM THE EDITOR
8. I know what I can do to help myself and who else can help me. 9. I am confident my end of life wishes will be respected. I can expect a good death. (Department of Health, England, UK, 2010) Let this guide our activism, so that these quality outcomes can be achieved by all persons with dementia across the world. Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
REFERENCES Batsch, N. L., & Mittelman, M. S. (Eds.). (2012). World Alzheimer Report 2012: Overcoming the stigma of dementia. Retrieved from www.alz.co.uk/ research/world-report-2012 Department of Health, England, UK. (2010). Quality Outcomes for People with Dementia http://www.dh.gov.uk/publications McFadden, S. H., & McFadden, J. T. (2013). Living longer, often with dementia. Phi Kappa Phi Forum, 93(1), 4–7. Prince, M., Bryce, R., & Ferri, C. (Eds.). (2011). World Alzheimer Report 2011: The benefits of early diagnosis and intervention. Retrieved from www.alz.co.uk/research/world-report-2011 Summit, P., & Jenkins, S. (2013). Sum it up. New York, NY: Crown Archetype. World Health Organization. (2012). Dementia: A public health priority. Retrieved from www.who.int/mental health/publications/dementia report 2012/en/
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
FROM THE EDITOR
The Global Outlook for Dementia Sandra P. Thomas, PhD, RN, FAAN, Editor
Thirty-six million people are living with dementia worldwide, as of 2010, and this number is projected to increase to 66 million by 2030 and a staggering 115 million by 2050. Let those numbers sink in for a moment. Then think along with me about the implications for psychiatric-mental health nursing across the globe. We need to apply our best thinking to the enormity of this problem, termed a “public health priority” in a report by the World Health Organization in 2012 (WHO, 2012). According to Batsch and Mittelman (2012), less than one in four individuals with dementia receive a formal diagnosis, perhaps because stigma mitigates against reporting symptoms. To complicate matters further, symptoms of dementia are perceived variously across the globe, ranging from the (erroneous) belief that such symptoms are inevitable in aging to beliefs in supernatural etiologies. Even when people understand that dementia is a brain disease, afflicted individuals are shunned and stigmatized. One individual living with Alzheimer’s disease wrote: “I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently . . . I kind of see this disease like HIV used to be . . . We did nothing wrong to get the disease . . . and no one should be ashamed of having it” (Batsch & Mittelman, 2012, p. 8). The words of this man were typical of many people who responded to an anonymous online survey conducted by Alzheimer’s Disease International, to which 2500 people, both patients and caregivers, from more than 50 countries, responded. The majority of respondents (75% of persons with dementia and 64% of caregivers) reported that they experienced stigma and societal avoidance (e.g., “People in the retirement community where we live prefer not to sit at a table with us in the dining room;” “Longtime friends and family no longer call or visit. They have stopped all interaction as though the disease is contagious” (Batsch & Mittleman, cited in McFadden & McFadden, 2013, p. 6). Not surprisingly, many people do not seek treatment because they do not want to receive such a devastating diagnosis, nor is their condition recognized and appropriately treated, as shown in the World Alzheimer’s Report of 2011 (Prince, Bryce, & Ferri, 2011). In that report, only 20–50% of dementia cases were recognized and treated by primary care physicians in high-
income countries, and the percentage of treated cases was much lower than that in middle- and low-income countries (e.g., 90% unidentified in India) (Prince, Bryce, & Ferri, 2011). Every country needs a dementia plan. Several activists have pointed to the HIV/AIDS movement as an exemplar of the needed coalition-building, campaigning, and lobbying. Stigma can be reduced by educational interventions, as shown in a randomized controlled trial in Hong Kong (cited in Batsch & Mittelman, 2012). People with dementia are speaking out, such as clinical psychologist Richard Taylor (www.richardtaylorphd.com) and basketball coach Pat Summit (Summit & Jenkins, 2013), and there are online support communities such as the Dementia Advocacy and Support Network International (www.dasinternational.org). In the 2012 World Alzheimer Report, positive initiatives in Peru, Hungary, Australia, China, South Korea, Dominican Republic, Sri Lanka, and UK were highlighted (Batsch & Mittelman, 2012). Psychiatric-mental health nurses can be integral as activists and educators in the dementia education movement, just as they were during the early years of the HIV/AIDS movement and the more recent Recovery movement. Nurses are already involved in the establishment and running of Memory Cafes, which have spread from the Netherlands to the UK and Australia (McFadden & McFadden, 2013). As I searched the literature, perhaps the most inspiring piece I found was a manifesto about quality outcomes for people with dementia, which states: By 2014, all people living with dementia in England should be able to say:
1. I was diagnosed early. 2. Those around me and looking after me are well supported. 3. I feel part of a community and I’m inspired to give something back. 4. I understand, so I make good decisions and provide for future decision-making. 5. I am treated with dignity and respect. 6. I can enjoy life. 7. I get the treatment and support which are best for my dementia, and my life.
785
786
FROM THE EDITOR
8. I know what I can do to help myself and who else can help me. 9. I am confident my end of life wishes will be respected. I can expect a good death. (Department of Health, England, UK, 2010) Let this guide our activism, so that these quality outcomes can be achieved by all persons with dementia across the world. Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
REFERENCES Batsch, N. L., & Mittelman, M. S. (Eds.). (2012). World Alzheimer Report 2012: Overcoming the stigma of dementia. Retrieved from www.alz.co.uk/ research/world-report-2012 Department of Health, England, UK. (2010). Quality Outcomes for People with Dementia http://www.dh.gov.uk/publications McFadden, S. H., & McFadden, J. T. (2013). Living longer, often with dementia. Phi Kappa Phi Forum, 93(1), 4–7. Prince, M., Bryce, R., & Ferri, C. (Eds.). (2011). World Alzheimer Report 2011: The benefits of early diagnosis and intervention. Retrieved from www.alz.co.uk/research/world-report-2011 Summit, P., & Jenkins, S. (2013). Sum it up. New York, NY: Crown Archetype. World Health Organization. (2012). Dementia: A public health priority. Retrieved from www.who.int/mental health/publications/dementia report 2012/en/
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
